Update 12/16/23. Repatha (evolocumab) is a popular medication for those with high LDL cholesterol levels. Another drug is called Praluent (alirocumab). Both medications are technically called PCSK9 inhibitors (more about that below). These drugs work differently than statins and have the advantage of only needing to be used once or twice a month. Muscle pain (myalgia) is a side effect of statins but what about Repatha? Do PCSK9 inhibitors cause muscle pain too? I became interested after someone I know who takes Repatha said he was experiencing muscle pain. The pain continued even after he stopped taking the drug. So does this drug cause muscle pain? Let's look at the research and see what we can discover. Also, see the Earlobe Crease And Heart Disease review.
What Is Repatha?
Statin drugs work by targeting an enzyme (called HMG-CoA reductase) that helps make cholesterol. By blocking that enzyme, cholesterol levels decrease.
Repatha is not a statin medication (like Crestor, Lipitor, etc.) but rather an antibody. Instead of targeting an enzyme, this antibody knocks out a protein that affects LDL receptors in the liver. By knocking out this protein (it's called PCSK9), LDL receptors are much better at removing LDL (bad cholesterol) from the blood. This, in turn, reduces the risk of atherosclerosis, heart attacks, and strokes.
Trivia: PCSK9 stands for proprotein convertase subtilisin kexin 9. Don't even try to pronounce it. Now you know why they call it PCSK9 🙂
Repatha and other PCSK9 inhibitors are injected with a small needle and are more powerful than statin drugs. They can be used in place of or in addition to statins. One big downside of PCSK9 inhibitors is that they are much more expensive than statin drugs. When I checked GoodRX.com, I saw Repatha selling for over $1200 for a month's supply! That's probably because the drugs are new. As time goes by and generics become available, the cost will probably drop.
What Causes The Muscle Pain?
People who take cholesterol-lowering statins sometimes complain of muscle pain. This pain can range from flu-like muscle aches, called myalgia to more serious things like muscle damage, called rhabdomyolysis (rhabdo). While statistically, muscle pain from statins is supposed to be rare, almost everyone I meet who takes these drugs has complained of this problem. Take that for what it's worth; just my observation.
Because PCSK9 inhibitors work differently, they are not supposed to cause muscle pain.
But do they?
Repatha And Muscle Pain
This medication is sometimes given to people who cannot tolerate statin drugs due to muscle pain. Recently, someone I know who takes Rapatha every two weeks and complained of leg pain – and quite severe pain too. When asked to rate that pain on a scale from 1-10, he rated the pain as an “8.” Pretty intense. He said the pain goes away when he skips the drug for a week or so.
That made me wonder if muscle pain might also be a side effect of Repatha too.
The Pharmacy Times has an interesting review that discusses this. They note that in people who could not tolerate statin drugs, 12% of those receiving Repatha for 12 weeks reported muscle pain. The study can be found here.
Another study noted a 5.4% chance of myalgia in people taking Praluent (alirocumab). A news release posted by Amgen, the maker of Repatha, noted muscle pain in 13.8% of people (it was lower than statin takers).
In a report from Amgen Canada, muscle pain has been reported in 3% of people using the drug
Bottom line: all this appears to show both Repatha and Praluent can cause muscle pain in some people. The percentage seems to be lower than with statins, but it still occurs.
Video Review
Watch the video on My YouTube Channel if you prefer
Repatha Other Side Effects
While PCSK9 inhibitors have not been around as long as statins, common side effects reported can include:
| Back pain | Blurred vision | Body aches or pain |
| Chills | Cough | Dry mouth |
| Ear congestion | Flushed or dry skin | Fruit-like breath odor |
| Headaches | Loss of voice | Sore throat |
| Stuffy or runny nose | Difficultly breathing | Vomiting |
| Weight loss | Skin discoloration | Sweating |
Some other things to be aware of:
- Some people have reported pain at the injection site
- Pregnant women should discuss the risk vs. benefits with their doctor before using it. There is a lack of research on this drug during pregnancy. The same thing goes if breastfeeding too.
- Approximately 1% to 10% of people taking this drug have reported high blood pressure. Monitor your blood pressure if you already have hypertension.
What Does Amgen Say About Side Effects?
Amgen is the pharmaceutical company that created Repatha. According to them, the most common side effects include sore throat, runny nose, common cold/flu-like symptoms, back pain, high blood sugar levels and pain, redness, and bruising at the injection site.
Serious side effects -which you should seek medical attention- can include serious allergic reactions (called anaphylaxis), which can result in difficulty breathing, swelling of the face, lips, tongue, or arms, difficulty swallowing, and breaking out in hives. These
Notice the list does not mention debilitating muscle pain as a possible side effect.
And yet, if you read the comments below, several people have reported experiencing muscle pain that lasts even after they stop taking the drug.
One Man's Story Of What Happened When He Took Repatha
Watch on my Youtube channel if you prefer.
Life After Repatha
In this video, I re-interviewed Robert to see how he's been doing since getting off Repatha.
Watch on my Youtube channel.
Lower LDL Cholesterol Naturally
Here's a video I created on some ways shown to reduce LDL
Watch on my YouTube Channel
Homocysteine Levels: How To Lower It
Homocysteine is an amino acid linked to heart disease. If you were told your levels are high, here are 5 ways to reduce your levels
Can Supplements Help?
If you're trying to lower cholesterol and LDL naturally, some supplements may help. For more insights see these reviews
- Apple Cider Vinegar (click to see review)
- Citrus Bergamot (click to see review)
- Cholesterol 360 Review (click to see review)
- Fiber (click to see review)
In addition, both weight loss and exercise can also help as well as quitting smoking.
Berberine 400 mg (60 capsules)
Natural PCSK9 Inhibitors?
Some evidence suggests the supplement berberine might reduce PCSK9 naturally. The evidence is preliminary, but it may be worth a try for those who don't want to take medications. For more insights, see:
Obviously, results will vary. See the reviews for more on the research.
So Is Repatha Right For You?
It depends on what your doctor thinks is best for you based on your health. These drugs are more common in those who don't respond well to statins. Price should also be considered, as PCSK9 inhibitors can be very expensive. If you experience muscle pain, bring this up with your doctor. Remember, evidence suggests both Repatha and Praluent (Alirocumab) can cause muscle pain in some people, so it may not be your imagination.
I have high genetic cholesterol. I had a stent in my LDA in 2015 with an 85% blockage. It been a struggle with finding the correct statin that I could tolerate. In a many conversations with my cardiologist, I have been on Repatha for 8 douses (2 x a month).
I have had the runny nose and flue like symptoms off and on. I am a 62 year old athlete that cycle 150-200 miles a week for 45 years. I am now getting joint pain where I had none before as wells as muscle soreness that i cant explain. I saw the videos of the gentlemen who is a marathoner, and I can relate. Any other recommended case studies with athletes or other recommended resources.
Bart, I did a quick look and found this study which looked at reports of muscle pain reported to the fDA adverse event reporting system (FEARS) that were related to both statins and PCSK-9 inhibitors
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8808238/
its reported what many here already know – PCSK-9 inhibitors are associated in some people with muscle pain. In the report they call it musculoskeletal adverse events (MAEs) which they define as
myalgia (muscle pain)
myopatha (muscle pain/weakness)
rhabdomyolysis (breakkdown of muscle – I wrote a book on rhabdo caused by exercise)
They said that Repatha (evolocumab) was associated with more muscle pain than Praluent (alirocumab) and that the reports of pain increases when PCSK9 inhibitors are combined wiht statins although this depended on the type of statin used.
Consider showing the study to your doctor and see what options you have.
I can’t wait for the weather to get nicer so I can get back on my bike – although I am no where near the bike rider you are!
i have been taking Repatha on and off for about a year. i am now experiencing severe pain behind my knee to a point where i am limping. i have some muscle pain in my hip too. My cardiologist would not admit it is from the Repatha and asked if i had rheumatoid arthritis He said it is not a common side effect.
Believe me this is real, and the pain is severe. I took my last shot 7 days ago and it will be my last. i tried skipping a month and/or several weeks from doses and still having issues. i am very active and take power walks often. i am not able to do that any more.
What good is lowering your cholesterol if you cannot exercise and are in pain. i hope this pain will go away and will try other options. I saw your podcast and was happy to see i am not going crazy and there are others in the same position as myself.
Hi Phyllis, I’m awfully sorry to learn what you have been going through. Its disheartening when you cant do what you love doing. I’m curious if you have gone to physical therapy just to rule out any possible other culprit (hamstring tightness, bursitis etc.)? Just a thought. I am glad you found the podcast and videos and that you know you are not alone.
Hi Phyllis,
I’m so sorry to hear about your problem with Repatha.
I, too, had a severe (muscle pain) reaction–after only 3 injections. Having tried several statins (going back 40+ years) and several other drugs, I had given up and simply relied on a vegetarian (Eat to Live) diet.
After 4 stents, my numbers still remained quite high.
Recently, my cardiologist suggested Nexletol. I’ve been on it for 4 months and my numbers have really come down, w/o any side effects.
It’s the first drug that has worked for me. You might want to look into this. Best of luck. Pete W.
I am very surprised that your cardiologist admitted that Repatha could cause Rheumatoid arthritis. You should get tested to see if you do have that.
And, if you’re taking Statins maybe they are causing your problem also.
I just got home from the hospital after having severe left arm pain. Last February I had an angioplasty in that arm due to a rare plaque blockage that started with arm pain etc. So I went in thinking it might be related to that or a blood clot. Or even a heart attack. They checked that out all negative.
My history is very severe arm pain with statins. When I mentioned this to the ER doctor and the hospitalist they said I would be the first person it happened to as Repatha wouldn’t do that. Didn’t take me long to research it and found studies that concluded 12% of people have that reaction….So happy to find this site and to see this video. I knew in my gut that it was the Repatha. I will bring all the information I find to my own Dr. who insisted along with my cardiologist that I get o Repatha.
Aryles, I am glad the review helped you. I will say I have heard from those who have not had any issues with Repatha as well as those who did. I’m not sure what triggers some but not others. I’m glad you are going to discuss this with your doctor. Do keep me posted on how things go.
Arlys,
It’s unfortunate how many medical professionals don’t understand the problem that Repatha can cause. I was taken to the emergency room twice for the effects of Repatha. Thought I was going to die. So it also kicked an immune disorder that after over 3 years I’m still trying to control. I had a stroke in October and I feel it was very likely as a result of medication I had to take for my GCA that Repatha caused. I get the feeling I will always be in the Repatha nightmare. Good luck to you!
Taylor
Taylor, I sure hope this year is better for you!
Taylor. If you don’t mind me asking? What was the autoimmune disorder you believe was caused ? I believe statins and possibly Repatha caused me to acquire Polymialga Rheumatica which I battled for 1 year.
David, it started as polymyalgia rheumatica, then was diagnosed later with Giant Cell Arteritis. It started after my first shot or Repatha, Dr said it couldn’t be the medication, got worse on the second shot, and 3 days after 3rd shot was taken to emergency room, one week later was back in there again. That was October 2020. Still trying to get the GCA in remission. The prednisone is the only thing that controls it, and that’s a tough drug on the body.
Hi, I had taken Evolocumab (Repatha), 5 years ago. The side effects have just begun to wear off this past year. Repatha tells your doctors that the drug has no serious side effects or so their Reps report. My doctor has finally learned that this statement is false. Report your side effects to the FDA, they can make changes when they have enough information. You can let the ER doctors know that Repatha causes severe side effects. Biologics can cause serious disease and cause other autoimmune diseases.
Regarding Repatha’s have-life; it can be in your system 90-120 days depending on how fast you metabolize it, (minimum is 90 days). I had Rhabdo twice, myopathy twice and full blown immune mediated necrosing myositis once. What a nightmare. I hope you feel better soon, it will take time. IMO, you should stay away for anything that alters your cholesterol, try plane based. PS Red yeast rice can also cause Rhabdo and myopathy.
Gale, sorry to hear about what you dealt with but glad are you are starting to feel better. You are correct about red yeast rice and rhabdo. I included that in my rhabdo book.
I watched the Robert’s video about Repatha. I’ve also experienced back and leg pain from taking Repatha. How long did it take, once Robert stopped Repatha, before the pain went away, he resumed running, and what did take to control his Cholesterol post-Repatha?
Hi Doug, Robert covered this in the Life After Repatha follow-up video here is the link https://youtu.be/-s36qnDWDo0
Doug,
My husband seemed to tolerate statins alright; however, once he started Repatha, he noticed pain in his legs, mostly upper thigh and tightness in the back of his legs which we at first thought was Sciatica pain. Then, as time passed the pain progressed to his shoulders. He stopped the Repatha and then stopped the Statins.
Like Robert in the video, he is active, outside every day doing something. He had a stent put in and then bypass surgery in October 2020 but was experiencing no symptoms due to his blockage other than when he had the stent put in after a heart attack that he quickly recovered from. Then he had the bypass surgery and came home from the hospital in 3 days.
We have a ranch and he resumed his usual outside activities quickly but was on a big dose of Atorvastin after the surgery for over a year and then moved to a lower dose of Prevastatin. and Zetia. Even though his cholesterol numbers were within range, the doctor wanted them even lower, around 70 he said which is crazy to me because every cell in your body needs cholesterol. His pain started in March 2023. Even though he stopped the Repatha, it became dibilitating. It moved to his shoulders, eventually subsided in his thighs but he had such bad shuolder pain that he at night he did not move from his back and still could not sleep.
He had lab work to rule out muscle deterioration (Rhabdomyalysis) and nerve tests to rule out nerve damage and an MRI of his shoulders. I am telling you this in one quick sentence but this pain continued for months and he saw many doctors to try to get relief. Test for Sed Rate, CRP and high sensitivity CRP were sometimes a little elevated but his last high sensitivity CRP was 1.8.
We saw the first Orthopedic doctor before the MRI and he took Xrays and tried to tell us that the terrible pain was from arthritis even though he had no history of arthritis at all and the Xrays showed normal gap between the joint bones and wanted to treat him with a steroid injection to his shoulders which he declined at that time, I think at the end of July.
Then he had the MRI in August. (Everything is a long wait to get any appointment other than with his Primary Care that prescribed oral steroid which did relieve the pain some but it returned as soon as he finished it. (Being on a steroid is not good for many reasons. You can google if you don’t know.) The second orthopedic doctor that reviewed the MRI was of the opinion that the tears in his shoulders were normal for his age. But, after ruling out muscles and ruling out nerves, what is left but tendons?
So, we sought the opinion of a third Orthopedic who said that at least the steroid injection might give him some relief and serve as a diagnostic tool. He did go ahead with the steroid injection to his shoulders in September and did get relief. He was at least able to sleep at night. After a LOT of reading of medical journal articles about statin toxicity and how tendons heal from injury, I firmly believe that over the course of his statin/PCSK9 therapy, the integrity of his tendons were compromised.
Like Robert in the video, my husband is active and eats very healthy foods and is not over weight. He is 67. So, for people who take statins and PCSK9 inhibitors who do not exercise, maybe they do not notice any bad side effects because they are not pushing their tendons and muscles. Because slowly over the time he took cholesterol lowering drugs his tendon integrity was declining, I believe that my husband’s pain is from rotator cuff injuries that normally would not have happened if he was not taking the drugs. But, not from a completely torn tendon.
In the case of a popped tendon, there is no other recourse than surgery but tendon healing is long and difficult and surgery is no magic cure. It is slow because there is very little blood supply to tendons and I don’t think even the experts know everything there is to know about how tendons heal. What I glean from what I have read is that there is a certain give and take between metalloproteinases and metalloproteinase inhibitors to maintain tendon health and during tendon healing.
Atthough PCSK9 inhibitors and statins might be beneficial in preventing and controlling endothelial inflamation, what happens in the rest of your body may be very detrimental. There are 24 different metalloproteinases in your body and that many inhibitors too. Bottom line, control inflammation in your body and especially in your arteries and there wont be any cracks for the LDL to set up in to form plaaque.
Most people don’t want to change their eating habits to avoid inflammation or lifestyle to avoid stress. So, doctors prescribe statins and now Repatha and the drug companies make a lot of money but heart disease has not been cured. In the proecess. While it might be helping your heart disease in regard to whats happening in your arteries, what its doing to the rest of your body including your heart muscle might be very detrimental.
It’s been 9 months now and my husband still has some shoulder pain but his sleep is not disturbed. He continues with shoulder exercises and tries to listen to his body. In other words, he wants his tendons to heal but if it hurts too bad, he backs off.
Rose, so sorry to read what you and your husband have been through. I hope he soon finds relief and tonight (NYE) is a fun and pleasant time for you both.
https://journals.sagepub.com/doi/epub/10.1177/0192623317711614
This medical journal article is about toxic Tendonapothy caused by drugs including statins. “ Toxic tendinopathy associated with drug administration is an underappreciated outcome in human patients.”
https://journals.sagepub.com/doi/epub/10.1177/0192623317711614
This medical journal article is about toxic Tendonapothy caused by drugs including statins. “ Toxic tendinopathy associated with drug administration is an underappreciated outcome in human patients.”
Wow I also had severe leg pain while taking Repatha. I took myself off of this drug and now I am taking Levqio. I will be on a twice a year dosage given to me via my doctor. Per my new cardiologist this is the last resort. I have tried everything to lower it however, it must be due to my family history. The first injection was in November 2023 and I go back in January, sort of a catch up. Then I will be on the twice a year dosage.
Keeping my fingers crossed that this will be the last one that I need.
Linda I also will keep my fingers crossed. Happy NYE to you also!
I had thigh muscle pain with several statins, and then got approved for Repatha, which my cardio doc said doesn’t cause the problems I was having. I have now been on Repatha for about 7 months, and have severe muscle pain in my thighs and joints, which makes it impossible for me to walk without a cane or walker. I stopped taking it this month (140 MG, twice a month) and some of the muscle pain in my thighs is less, but walking without help is impossible. I watched your video tonight, and found out it will take 2-3 months to get it out of my system. I have severe pain whenever I try to get up, sit down, or try to walk. I was going to take the Repatha, tonight, but hearing it takes longer to get out, I decided against it.
Oh Jackie, I am so sorry to hear you need help walking! I cannot imagine how you must feel. I wish I had some words of comfort for you.
Perhaps one day Joe, you can get into LDL, fluffy vs dense…how two people with the same LDL value might actually be at very different levels of risk. How doctors don’t typically test for LDL particle size, only for total LDL. Also the importance of the Trig:HDL ratio.
Thanks in advance.
Jordan
Thanks Jordan; funny you should say that I just saw a cardiologist on social media saying he never tests for LDL size because heart disease risk is all about the LDL number in general and size doesnt matter as much as the total number. As I understand it, thats the “LDL hypothesis” as Ive heard it called. I would like to interview a cardiologist on my podcast about this to learn more.
Hi Joe.
For the most part, traditional doctors have a single approach to LDL. If it’s high, that’s always bad – treat it with exercise/diet and then medication, & ignore the importance of the HDL – triglyceride ratio. When I brought up LDL particle size to my doc, he essentially rolled his eyes. May I suggest getting a cardiologist who is educated in lipid analysis?
Thanks, Jordan
From what I have read, inflammation and remnant cholesterol are the culprits. If blood pressure is under control and bad eating habits, drinking, smoking and sugar are eliminated, then there is less chance of inflammation and damage to the endothelial wall of arteries. When there’s damage, that’s when the smallest particles of LDL enter and the plaque forming process begins.
I just think people are not willing to eliminate their bad habits, so inflammation persists and that is the true root cause of heart disease. My husband experienced dibilitating pain from Repatha. I don’t know why or how it causes the pain. Lab tests don’t indicate rhabdo and CRP and sed rate are higher than normal but not awful.
I do know the pain started in his thighs and has now seemed to settle into his shoulder joints even though it has been 2 months since his last Repatha injection.
Steroids relieved it but it is back since finishing the round of steroids. Did it trigger some sort of autoimmune response in his body? He was fairly healthy and active but now not the same since he took Repatha.
Rose, sorry to hear about the pain your husband is dealing with. I hope he begins to feel better soon.
Joe,
It’s been awhile since I last wrote to you, but being one of the folks that was put on Rapatha and then took myself off, I can tell you it’s been a struggle to find another alternative. I eventually left my previous cardiologist and found another that came highly recommended. He recently put me on a new statin called Zypitamag Pitavastatin. 4mg dose. So far it’s been working well for me, with no muscle issues at all. This may be a good alternative for some of your readers.Not only has it lowered my LDL, but it has also raised my HDL by a few points.
Hope this helps those struggling to find the right medication.
John
Hey John, good to hear from you and thanks so much for the tip about Zypitamag (pitavastatin). I’m glad it’s working so well for you I hope this is an alternative for others out there struggling with repatha.
Hi Joe,
I just finished listening to your Podcast on Repatha and would like to share my story with you. I was a personal trainer and took a lot of your certifications many years ago. You were always my favorite instructor because you explained everything so clearly.
My problems started about a year ago. I had moved down to Florida during Covid and began looking for doctors down here. I found a primary care physician who ran routine blood work and found my cholesterol to be very high. I work out every day, I felt great, I am vegetarian, not vegan, but I eat very little dairy. She immediately sent me for a CCTA test, which was 91. They said they like it under 100 but I was close. She prescribed Crestor. I was hesitant to take it because I don’t like taking any medication. I finally took it for 3 weeks. I felt horrible, I could not even walk a few blocks without taking a rest, let alone do my normal weight workouts or cycling workouts that I have been doing for the past 30 years.
I tried eating super clean, no cheat days, no dairy, no high-fat foods. I tried Red Rice Yeast and had my blood work done and it came up even higher. The Dr then put me on 20mg of Lipitor and recommended I see a cardiologist. I was referred to a wonderful Dr who understands an athlete’s mentality.
Since I was doing ok with the 20mg of Lipitor, he raised it to 40mg. I was doing ok until right before my 3 month check. My cholesterol had dropped in half but they want my LDL down to 50! It was then recommended I start on the Repatha AND 20mg of Lipitor. They said I was the perfect example of who this drug was made for.
I was basically in tears when I left the office. This was in January. I did the first dose, I had no problems during the first two weeks other than bruising at the injection site. I took the next dose two weeks later and I had some hip discomfort but thought I may have done something while working out. It seemed to be worse at night. I then took the next dose and shortly after my knees starting hurting. I hadn’t been doing anything different and did not injure myself.
I had attributed this to maybe the couple walks I took on the beach so I stopped doing that. I also stopped playing Pickleball, which I could play for hours. I did the next dose and shortly after I started to feel pain and swelling around my right ankle. Again, I hadn’t done anything to injure myself. I took a week off from working out and walking. I took Aleve and I still had no relief.
Last night I basically woke up crying in pain. I am only 58 years old and had been very active with lots of energy but now I barely feel like doing anything. I am scheduled to do another injection at the end of this week and a follow up next week with blood work.
I think I am skipping the injection and see what my numbers look like. I have never had any heart issues, no chest pains, no shortness of breath. I’m not sure this Repatha is worth it if I cannot be active and enjoy my life. I hope the Dr you interviewed is doing better. My husband listened to your podcast with me and said “no more injections”.
Hi Diane, thanks for reaching out and sharing. I’m very sorry to hear about the pain you have been dealing with. I have witnessed how bad the pain is in someone who took Repatha so I do understand. I’m glad the interview with the doctor helped you and I hope you will let me know what your doctor says when you bring this to his/her attention. I’ll say a prayer that you feel better soon.
Thank you so much. I will definitely let you know what the doctor says.
Hi Joe, it’s been a few years since I reported to you my severe muscular problems with Repatha. I’m happy to report that I am now totally OK. So there’s hope for other people out there. Best regards Neil Berliner, MD
Hey Neil, great to hear from you! SO Glad to hear you are doing better today!!! Best news I’ve heard all week 🙂
how long did it take if you dont mind me asking. Ive been dealing with extreme muscle loss, fatigue, cant walk stairs etc Been off rapatha 90-days now. Took a steroid pak few days ago and seems to help little. I was on rapatha 18 months.
Well, it has been almost 4 years since I developed severe health issues after taking Repatha. Yes, I am Statin intolerant. Do the Doctor’s know what they are talking about? No, they don’t. Not even Rheumatologists. I have severe immune disfunction from Repatha. I also have Necrotizing Myositis proven via biopsy caused by cholesterol medications and Repatha was the cause this time. I had severe myopathy twice with Statins, once with Repatha and it has not gone away.
Rheumatologists love to call it “Polymyalgia Rheumatica” or “Polymyositis.” For most of us, it is neither one. It is Necrosing Myositis that is proven only thru biopsy. It is highly dependent on steroids. The doctors will tell you that you HAVE to get off of the steroid and they will attempt to do it quickly which causes other related issues. (They have put me thru the ringer via their own ignorance off this disease)
NM requires strong immunosuppressants and steroids. I weaned down to 10 mg quickly and then 5 mg. The last attempt by the “specialist” to wean off the prednisone caused lung scarring. I am back at 5 mg and will not listen to them again. (They have almost killed me 3 times because they refuse to listen to the patient or read about NM.)
Poly and NM are NOT one and the same, don’t let them tell you that. There is much more on this topic but this is enough for now.
PS not all with muscle pain will have NM but if the pain worsens or does not go away, consider a muscle biopsy. REPATHA has a half life of 90 days, not 1-2 weeks. That means it is in your system and continuing to cause problems for 90 days, give or take a few.
Hi Dana, oh wow I’m sorry to hear about the pain and stress you’ve been going through since taking repatha. Would you like to come on my podcast to discuss this? No pressure if you would rather not. I understand. Yes the doctor I interviewed is doing much better. I just spoke with him recently. He cut out junk food and his cholesterol, etc numbers are all doing well.Hes taking a low dose statin a few days a week but thats it.
Hi Everyone, here is the podcast where I sat down with Robert, a doctor and marathon runner who developed muscle pain soon after taking Repatha.
http://joe-cannon.com/is-the-cholesterol-drug-repatha-safe-podcast-120/
You can also find this on your podcast app of choice just search for “Joe Cannon Health. It is episode 120.
I hope you are all well and have a nice weekend.
I just watched your you-tube podcast, and I have decided to stop my Repatha.
I am not an athlete or anything, but even doing house work debiltates me as my muscles the day after are very painful.
I have only taken three shots, and my MD asked me to wait four weeks instead of two for my fourth shot. I also had fatigue, a HA and extreme sadness, as well. That has subsided, but my muscles are still achy.
I found your podcast as I was wondering if I should take the fourth shot, and if I was just imagining the side effects. Now, I don’t think I am , so Thank you!
Hi Susan, Im awfuly sorry to hear about the debilitating muscle pain, fatigue and sadness you are going through. I dont think Ive heard sadness as a side effect or repatha – maybe someone else here can comment if they experienced it too? Since Im not a doctor I cant give you any advice on whether you should keep taking repatha or not. Im just speculating, but it sounds like your doctor is trying to give it time to clear from your body by having you wait 2 extra weeks before your next shot. I really wish I had some intelligent insights on this for you. When you tell your doctor what is happening, what does she/he say?
I’m not a doctor either, but my advice is run like hell away from it. I took 3 shots 2 years ago, and am still dealing with problems that came on after my 1st shot. It caused an immune system reaction that I’m still dealing with. PMR/GCA. It’s horrible. That’s my 2 cents wort. Good luck with your healing.
Oh wow, Taylor – 2 years later! I am SO SORRY!!!
Taylor. Did your doctor or anyone have any correlation of PMR to Repatha ? I too had PMR after being on Repatha for more than 2 years
would like to discuss my rapatha issue with you. Was on it for 18 months im 58 very active and now reduced to a crawl. Stairs a nightmare and no muscle strength. Been thru tons test and zero results. Def been a scary situation. Caused my blood press to rise also. Ive been off 90-days now and stilll lots issues.
Hi Mike Im glad to talk although keep in mind Im not an expert on this. I feel awful learning what you have been dealing with.
Here is the video interview I did with a doctor and marathon runner who took repatha.
https://youtu.be/oq_LoRGiIC0
If you prefer to listen, I’ll post the podcast version here this week. My podcast is called Joe Cannon Health which you can also find on your podcast app of choice.
Joe, it’s been a while since we connected, I watched the video with the dr, and it so brought back memories. It was a year ago when Repatha took my life away. I still deal with it daily and I feel I lost years off my life. Any way, I can tell more if you are interested, hospitalizations, many drugs, lots of bed time, barely exercise etc. thanks for keeping this front and center.
Hi Taylor, nice to hear from you again. I am so sorry to hear you are still dealing with problems. yes, I’d like to learn more. Im glad you saw the video. Here is the podcast version of the repatha interview.
My experience with Repatha is similar to Robert’s with the exception that my muscle pain started 2 days after my first and only 140 mg injection. My neck, shoulders, forearms and wrists ached, I felt fatigued and unwell…so I decided at the end of my first week post-injection to never ever get another Repatha shot.
It’s been a month now and my “bad” days are getting more infrequent. That’s an encouraging sign.
Currently, I’m looking into natural ways of reducing my LDL. Berberine looks interesting but I’m concerned that since it’s a PCSK9 inhibitor like Repatha, the side effects *may* be similar.
Losing 15 lbs., improving my diet and stepping up my exercise program – I’m working on that now. I am researching the various supplements that claim to lower LDL. Statins aren’t an option for me because of severe muscle and joint pain.
Thank you Joe.
Jordan thank you for sharing what happened to you. Im confident that you and everyone else who had detailed their experiences with Repatha are helping many other people. Im glad to learn your bad days are less. That is a good sign.
About berberine, if it helps Ive never heard anyone complain of muscle pains with it. The research Ive seen on it being a natural PCSK9 inhibitor is less than what Id like to see.
Here is a video I did on berberine that addressed this
Here is my written review on berberine and PCSK9
About the cholesterol supplements, you’ll probably hear about red yeast rice. While research shows it lowers cholesterol, it works because it contains a natural statin compound.
Hi Joe,
I gave Repatha another try and it actually felt like a mild flu with its associated fatigue, aches and pains. After a month or so, I was feeling much better.
So, after some time I tried Praluent, Repatha’s competitor. It made me feel like I had a full blown flu. But magically, after 2 days of severe aches, pains and tiredness, I completely recovered and felt like my normal self.
My takeways are 1) Repatha and Praluent are off limits for me 2) I had to find an alternative(s) to lower my LDL.
I’ve stepped up my exercise program and have been taking Citrus Bergamot, 500mg twice a day. I’m about 3 months into this new regimen and I’ll have a new lipid panel done in about a month at which time I’ll have some idea of its effectiveness, or lack thereof.
I am statin intolerant but I know from experience that I can tolerate the lowest dose of Crestor (5mg) twice a week, but no more. There are studies that show this kind of dosing to be somewhat effective.
So perhaps I will start taking the Crestor one day a week and then add another day in the future.
That’s all for now. I wish you and your followers all the very best.
-Jordan
Jordan, thanks for checking in. I hope you will let us know how your next lipid panel goes for you since you started taking citrus bergamot.
I’m so glad I found your site and your comments on Repatha. I have hereditary high Cholesterol. My mother and brother also have this. No one in my family has had a heart attack or any significant heart disease issues or history of . A decade ago, my GP prescribed me to go onto severaI different statin drugs – Lipitor and Crestor based on high cholesterol. Both caused severe joint pain within several weeks. I discontinued them. I also tried Red Yeast Rice – which also caused joint pain. Fast forward to my 50th birthday, with years of Cholesterol in the 280-330 range, I decided to visit a Cardiologist.
I went through a battery of tests – including treadmill and MRI. Results show I have high calcification of my veins – in the 99th percentile. Surprisingly, my veins are not clogged. My Cardiologist put me on Livalo, Zetia and after 6 months of waiting for approval, Repatha and then Rampiril for moderate blood pressure. For 2 years, I saw no noticeable side effects. Although, I always felt like a guinea pig with Repatha as a nurse called me every two weeks from the pharmaceutical company asking how I was feeling. ( Who does this for normal meds??).
I did notice my mind was getting foggy and my memory failed me a lot on names and numbers. My total Cholesterol number dropped as low as 81. The Repatha worked as stated. As I look back, I believe I had symptoms of muscle weakness in my arms in Oct 2020 after being on these drugs for over a year. I noticed during workouts with weights that my biceps felt weak or weird . In Dec of 2020, I tore my meniscus playing tennis and developed a limp. I did not think of any connection to any of these drugs.
In Jan of 2021, I started to feel duplicate pain in both legs. After several weeks, started noticing the pain seemed to migrate from legs, to shoulders (both) and then arms and neck – it seamed to move around. But always on both sides of body. I felt weak and tired.
My GP saw me and ran tests. My C Reactive Protein was 81 off the charts (normal is 0-10) as well as CK. He prescribed me strong steroids which had immediate positive effect and suggested I stop taking all statins and Repatha until we figure it out.
I called my Cardiologist office and he suggested coming off the Livalo only, but said nothing I was experiencing had anything to do with Zetia or Repatha. Interestingly, the Cardiologist nurse on a separate after I called back saying I was coming off of everything said “If I was you, based on your symptoms, I would come off everything, but I would get fired if the Doctor heard me say this) After hearing this, I stopped taking all drugs.
Upon return visit to my GP, he recommended I see a Rheumatologist and a Neurologist. Both took 6 weeks to get into. GP prescribed a two week dose of steroids. The pain slowly came back even on steroids. After the prescription ran out, my pain increased and within a month, was having trouble walking, putting clothes on and doing basic things. I thought I had developed something life changing.
My visit to Neurologist showed no issues after several extensive tests on muscles and nerves. My first visit to Rheumatologist immediately said – You have Polymialga Rheumatica and put me on a course of lower dose steroids daily. (no testing, just based on my symptoms and response to steroids) No known reason for getting Polymialga. This steroids took away 99% of the pain and life returned to normal.
After 8 months, I lowered my dose to such a small amount, my Rheumatologist suggested I stop taking steroids and see how I feel. Upon coming off, I am 99% better, but I have muscle weakness and pain in my biceps. I realized, this was the first symptom back in Oct 2020. Its feels like I have worked out heavily with weights and I am sore and muscles weak – which I have not, and I have trouble lifting things and doing things like push ups (which is new). My arm bicep muscles are not normal.
Unfortunately, my Rheumatologist and Cardiologist do not see a connection. My GP is sort of out of things to suggest I do – last time I saw him said “some things never get resolved”. No one except me feels this is related to my statin and or Repatha use.
I am now in a position with very high cholesterol but I am 99% against taking these drugs again. My arm weakness is very noticeable and I am now looking for someone to help figure out what is going on as well as advice around what does one do with high cholesterol when the drugs dont work and may have caused harm….
I have definitely seen many comments on this site and others that have mentioned Polymialga Rheumatica as a possible side effect with no proof and similar Myalgia pain issues. I feel like after visiting the 3 doctors, criticism of a drug they prescribed is taboo.
Hi David, Im so sorry to hear what you have been going through! I believe others here have also expressed that some doctors were skeptical of repatha causing muscle pains. It’s so interesting what you said about tearing a muscle while on Repatha.I’ve heard others say this too. If you watched the video with Robert, he also mentioned someone who had a tear while taking the drug. Here is the podcast if you prefer to listen. The person who I knew who first got me looking into all this did not have any muscle tears.
I wish I had some answers for you. I assume you are at a normal body weight? Do you exercise? You mentioned red yeast rice, but that works because it contains a natural statin drug. Have you tried adding fiber to your diet or the supplement bergamot? Here is the bergamot review if you have not seen it.
Thanks for the video! Wow! I wish I had known this back last year when I was prescribed Repatha. I’m living in a nigtmare! I’ll try to make my story brief.
I had coronary bypass surgery last year, March 15, 2021. I have a history of statin intolerance, (which at the time I had taken it was masked by Effexor and lots of Ibuprofen). So my Cardiologist said this new drug would be great because any side effects are mild and no muscle pain. I wish I had done my homework and not taken the pharmacists word for it. Because my fears were realized. I was on so many pain relievers that it was almost impossible to detect the origin of pain.
I began the Repatha May 1, 2021 around the same time I began Cardiac Rehab. I had hip and thigh pain but I thought it was a flareup of Fibromyalgia cause they were working me hard. Then the next few months I more symptoms appeared, but I thought it was withdrawals from medications.
My PCP told me that I was experiencing withdrawals from Lyrica in October and prescribed Clonidine. Soon after, my back went out, but I concluded that it was caused by the Clonidine. After I finished my last dose of Lyrica in late December, I noticed increased anxiety. It seemed that symptoms were appearing or worsening exponentially after that.
I ended up in the ER in late January. I was having heavy chest pressure. They took an x-ray, did an EKG, and tested for Troponin. No indication that it was my heart. Doc gave me Protomax for reflux and sent me home. I thought it was strange that my blood pressure was all over the map while I was there.
In February, I came down with Covid Feb. 3. I went from the frying pan into the fire. I experienced the worst flu symptoms ever: intense chills, shakes, panic attacks etc. And I never fully recovered. Went to Urgent care after two weeks to try to find out why I was shaking so much. No Answer. It was during my “recovery” that I began researching the blood pressure medication, Cardizem, I was taking since it was linked to anxiety and panic attacks.
I told my Cardio that I wanted to get off of it. So I started to titrate down. But I noticed that my anxiety wasn’t diminishing. Within days of taking my last dose of Repatha, March 6, 2022, I had acute muscle spasms upon waking. I had to sock my calves to get then to stop. That was new and reminded me of statin cramps. Three days ago I sat down to research Repatha and I was SHOCKED by what I read. I feel I have been duped.
Everyday my symptoms worsen. I have chronic hip, leg, and back pain. My leg muscles are stiff and hard. My neck and TMJ are worse that ever. I must take pain relievers and Atarax for anxiety all day and they only take the edge off. I have trouble climbing stairs and I get out of breath. I am struggling to walk and so that’s a good-bye to my treadmill. My legs and arms are shaky and weak. I feel sick to my stomach everyday. My skin burns. My sleep is terrible. I’m effectively disabled.
When I told my pharmacist about this, his reply was similar to what other patients of Repatha have been told, “That’s strange, those kind of side effects are rare.” I challenged him and he did admit that it has happened.
I’m sorry this has been so lengthy, but I hope this informs your readers. I have no idea if I have permanent damage and how long it will take to recover, if I can. I am very scared. I would love to hear from those who have recovered.
Hi Becci, first let me say I am so sorry to read what you have been dealing with since last year. The idea of getting a bypass during covid must have been very scary for you – and then to later get covid must have been so depressing for you say nothing for what you were experiencing physically. I do appreciate you writing all that you did because you ARE helping others who are looking for answers about Repatha. Im sad your pharmacist did not seem to know about the muscle pain side effects as they are the drug experts. Here’s a podcast episode where I interviewed a pharmacist and we believe we discussed repatha.
I wish I had some answers for you on how to feel better. I feel so badly for what you and others have experienced. From what Robert said in the video, from his research repatha the half life -time it takes for 1/2 to breakdown – is about 27 days (Robert, correct me on this I forget the exact time you mentioned). Either way what this means is that eventually all the repatha will be cleared from your body and hopefully the disabling pains you are feeling should go away. The person I knew who first promoted me to look into this did eventually feel better after a few months. How long it takes to fully leave the body appears to depend on how many shots someone took.
I think my best advice is to not lose hope and have patience. Try to do what you an to stay healthy not only physically but mentally too. I can only imagine the mental toll all of this has had on you. Feel free to write back even if you want to just vent. Im listening.
I had my first injection of Repatha yesterday morning, Aug 16. Soon after, I had extremely dry tongue and it looked grayish in color. Some fatigue and mild gastro issues.
By nighttime I had severe back pain, overall muscle pain, shooting pains thru ankles, toes, wrists. sternum and ribcage. So weak I could barely walk to the bathroom.
Though stains and Repatha work differently, I wonder if people who cannot tolerate statins are more prone to muscle pain from Repatha. Most drs tell you there are “no side effects” which is simply not the truth. The Repatha website lists back pain and muscle pain as common side effects. Never let a Dr intimidate or shame you by saying your symptoms are “odd” or “rare” They are listed because they have happened and they are real.
I have congenital high LDL w 50% blockage in my LAD so I had to try Repatha as statins gave me severe muscle pain. I took bergamot/Berberine supplements for a year, but it did not lower cholesterol or slow plaque progression. Where do I go from here?
Eliza, How are you feeling today? Im SO sorry to hear what you are going through. Did you reach out to your doctor and let them know what is happening to you? Thats an interesting question about whether those prone to muscle aches from statins are more likely to experience repatha side effects. I do not know the answer to that question.
Have you tried changing what you eat to lower LDL levels? My guess is you have but wanted to toss it out just in case. I just heard from someone whose LDL is now 100 through diet changes alone. I know genetics will play a role in how well that works for everybody.
I had my first Rapatha dose by a nurse in the abdominal area, no problem. Next month I saw the thigh could be used, so I shaved a part of the upper inner thigh and did the injection. The next day by upper thigh developed increasing pain, the following day I was in a wheelchair, the pain was so bad. I called Rapatha, but never got a call back. Next dose was on the abdomen, but the leg was still a problem.
Fast forward to today when I finally saw a Physical Therapist who narrowed all of my debilitating pain down to a muscle injury to the sartorius muscle which is superficial and just below the skin where I injected the drug. I don’t have any fat, and I wonder if the injector could have gone into the muscle itself.
I am inactive due to other limitations, so there is no way that muscle could have been otherwise injured. It has been a miserable three months, and I have the next dose ($148.00) in my fridge. After reading these comments, I am DONE
Stephen, oh wow I am so sorry to hear this! Wheelchair after the 2nd dose! Whats equally disturbing is Amgen, the repatha company did not call you back. Injecting into a muscle can cause pain but to put you in a wheelchair, Im not sure. Do you have pain only in your leg or all over?
The pain which ended up spreading to nearly all the muscles of the upper leg finally subsided after the p.t. isolated the area of the affected muscle and did his therapy. A day or two later, I had recovered. Duration of pain was about 90 days. I was not in the wheelchair the whole time, but only from time to time when I could not hobble with my walker. The p.t. ruled out hip, sciatic, s.i. Joint etc. My conclusion may be faulty, but I don’t believe this was mere coincident to my administering the drug.
Stephen, I’m happy to learn you are out of pain! I agree it happened too close to when you took repatha to think it was a coincidence. I’m just glad you’re out of pain and can resume your normal daily activities 🙂
Joe, I’d like to ask a couple of questions, with respect to Repatha-caused muscle pain.
First, your friend, who switched from Repatha to Praluent: Did you mention that he was also taking a statin? He must not have had the statin-caused pain issue that drives some of us to the PSCK9 alternative.
Not being any sort of scientist, I read that the main chemical difference, between R & P, is the active ingredients. R & P seem to work the same way and, from what I gather, 5-6% users of both report problems with muscle pain. What specifically differentiates alirocumab from evolocumab?
Appreciate any help.
Pete
Pete, originally my friend was taking a statin. His doctor switched him to repatha and soon after that is when the muscle pains started. As I understand this, the active ingredients in repatha and Praluent are different but they both inhibit PCSK9. Since they have that in common, it seems to me that the pain people are experiencing is due to inhibiting PCSK9. I’m sure a doctor/pharmacist could weigh in more intelligently on this than I can.
The statistics for myalgia (they make a play on words and call it ‘flu like symptoms’) are about 13%. The rule of thumb, if you had TRUE statin myopathy and begin another cholesterol lowing drug, the chances of myopathy with the injection drug is greatly increased. I would demand genetic testing and see if you can or cannot take cholesterol medications.
https://databankws.lareb.nl/Downloads/Signals_2018_PCSK9%20inhibitors%20and%20myalgia.pdf
Max, Thanks for the input. I started having side effects, from Lipitor, a couple of days after it was first prescribed. This was in the 1990s.
We tried two other statins, then niacin, zetia & welchol and I also had reactions.
I limped about for 5-6 years as the muscle weakened. Years later, I had a similar reaction from Levaquin, for something unrelated. I went to several specialists and they had no answer. My doctor had run different tests and concluded that the cause for the myalgia was probably in my DNA.
I wasn’t surprised that I had leg pain from Repatha and stopped immediately after it began.
My gut feeling dovetails with this study. To roll the dice with Praluent
is probably not a great idea, even with my high cholesterol numbers.
Appreciate your help.
Pete
Hi. I’m a 27 yo man diagnosed with familial hypercholesterolemia at the age of 11. I was on a statin medication for the past 10 years (Lipitor, 20mg), but wasn’t able to lower my LDL enough (LDL = 3.8), even though I’m also following a strict diet and I hit the gym 3 times a week.
Increasing my statin medication (80mg, Lipitor) had the effect of blowing my CK levels through the roof (10,000 U/L) and also gave me joint pain. Thus, increasing my statin to lower further my LDL wasn’t an option. I heard about Praluent 2 years ago and thought this would be the perfect alternative to statins.
Getting it approved with my insurances took a long time, but I was finally able to receive my first pens this week. My first injection was around 72 hours ago. At first, everything was fine, but the morning following the injection, I felt a discomfort in my lower back. It slowly got worst as the day went by. The following day (yesterday), I woke up with pain in all of my joints. Even lifting a box of cereal was uncomfortable.
Note that regularly bench over 120 lb at the gym. My knuckles are also cracking like crazy and I had a headache in the evening. Today, the pain is pretty similar.
I called my pharmacy to report these symptoms and they told me this would be a very rare side effect of Praluent and they had no idea for how long I should expect to feel this pain. They suggested I take Tylenol, which I did this morning, and it didn’t work at all. I should be able to get in touch with my doctor next week to discuss this with her.
I’m so fucking disappointed and I feel as though there is no cure for me. Lifting weights was the only source of joy I had left during this pandemic and now I can’t even sit at my desk for more than an hour because of back pain. Fuck this shit, seriously.
Oliver, I am SO sorry to hear this happened to you. I understand the frustration you are going through, not being able to go to the gym. while I can’t say how long you will be in pain, I can say the pain WILL go away. You will be able to go back to the gym. Keep that in your mind. I wish I had some options for you. Are you able to walk? If yes Id suggests trying to get outside and taking a walk. Even a little physical activity can help you feel better mentally.
I think you are the first person to say Praluent caused the same muscle pains as Repatha (has anybody else had this symptom with Praluent?).
Please write back and let us know what your doctor says. Until then, try to stay calm. You WILL be able to bench press again.
Praluent does cause muscle pain In my opinion you should follow up with bloodwork, such as; liver enzymes, CPK, CMP and ESR. The biologics for cholesterol clear you body in 90 days, (half life of 17-17 days equals 90 days.) That does not mean that the side effects will go away. Report the side effects to the FDA (800- FDA – 1088). Why didn’t your doctor do genetic testing to find which statin you can or cannot take? Please try to realize that doctors prescribe the drug (which is new) and are clueless about side effects…we are quinea pigs. Here is a link, please read it. I wish you well.
https://databankws.lareb.nl/Downloads/Signals_2018_PCSK9%20inhibitors%20and%20myalgia.pdf
Max thanks for that paper. I’ve saved it to my files.
Both repatha and praulent caused muscle pains. Not as bad as the lipid which put me in the ICU for rhabdo but still pains. My cholesterol is too high without taking it but I also get severe diarrhea from it. I’m on repatha right now and took an injection this morning and within an hour I had severe diarrhea. Now I’m having such horrible muscle cramps in my chest I can’t stand it. (I know it is not a heart attack). Just muscle cramps.
Can’t someone make a drug which can be tolerated?
Mary, I’m so sorry to hear about the pain you are dealing with – and I’m also sorry to learn you developed rhabdomyolysis from a statin. Have you had these chest cramps after repatha before? Is that how you know its not a heart attack?
I think you are the first person here to mention diarrhea from repatha. Severe diarrhea can make us weak very quickly and can cause dehydration and electrolyte imbalances too.
I’m having the same issues with Repatha, all my joints are swollen. Nothing is dulling the pain or swollen joints. My pharmacist called the company and they said it could take a few months to get out of my system.
Nate, so sorry this is happening to you. I’m glad to hear your pharmacist got an answer when he/she called the company. It sounds like they are now admitting this is a real phenomenon.
Hi Linda and Taylor,
Being in the same boat, I’m shadowing your comments on Repatha pain. My PC wants me think
about Praluent. All I can find on line is anecdotal information: 3 people: One had success, the other two got more pain.
I’m going to meet with my cardiologist, in December, and hear his recommendation. You have
to believe that there’s a Plan B out there.
Best,
Pete
Pete, have you tried any supplements or lifestyle modification (exercise, weight loss, more fruits/veggies/Mediterranean diet)? They won’t likely lower LDL as much Repatha/Praluent but it cant hurt. Heres a video I did on lowering LDL naturally https://youtu.be/w5CsS5Lgiww
Thanks Joe,
Yes, I take Cholestoff & fish oil for triglicerides.
I’m in decent condition–77 yrs. old, 5’11 & 170 lbs.
I exercise (walk, bike rise & swim) 1 1/2 hrs each day & have been
on the Fuhrman “Eat to Live” maintenance diet, for 5 years, since the first stent.
I’m glad you know someone who had good luck with Praluent
after Repatha. I might just go down that road.
Pete, Maybe consider adding some resistance exercise to your regimen. Aerobic exercise is good. Strength training works in other ways.
Let us know how the Praluent works out for you.
Have them do a genetic test to find which one you can safely take or if you should not take one. The trials on these drugs have been brief. They are just learning the severe side effects.
I have had very high cholestrol numbers and tried every statin known to mankind. I ended up having a triple by pass on 3-26-19. My cardiologist put me on Repatha. Wow the numbers have gone done so much you would think this drug was the best thing since sliced bread. I am on my 7th injection. I’m in such pain with walking that instead of being 62 I look and feel 92.
My legs and hips hurt so bad that I am not able to continue to do my daily walks. Honestly I believe this might be the god send for some, but not for me. I have complained to my cardiologist and my primary care which has fallen on deaf ears. They keep telling me that this injection is not a statin, therefore the muscle and joint pain is not possible.
That was not the side effects that the developer mentioned. I am at my wits end. I need to get off this drug find something that doesn’t cause this much pain and I will be a happy camper.
Any idea how long this injection stays in your body and in about how many months do you believe I will be able to walk without agony.
Thank you
Linda, so sorry to hear how much pain you have been dealing with. As far as how long it will take for the pain to go away after stopping Repatha, I can only go by the person I knew who had the same problems. For him it took about 3 months for the pain to go away. Don’t take that as gospel. It may be less for others. I have not seen any studies looking at this. I feel badly that your doctors are not believing you. I’ve heard this from others too. While Repatha is not a statin, the pain is real. Others here have said so. Have you asked your doctor about switching to the other injectable drug called Praluent? The person I know who had the Repatha pain switched to Praluent and said he no longer has any muscle pains.
I will see my cardiologist again in January and I am not going to give up. He will certainly hear my plea with trying something different. The other obstacle is the insurance. So many plans do not cover these types of drugs and with the co pay card for the entire year. you still have money to pay. These new fangled drugs in my opinion are not really put in trials for a long enough period to get all of the data.
Thanks so much for answering I am so glad that it is not in my head, the pain is real. Merry Christmas
Linda, let us know what your doctor says in January. The pain is real. It’s not in your mind. Merry Christmas to you too 🙂
Print this and take it to your doctors, this is not the only study finding these problems.
https://databankws.lareb.nl/Downloads/Signals_2018_PCSK9%20inhibitors%20and%20myalgia.pdf
Have you had blood work done? GP’s and Cardiologists only repeat what they are told by the manufacturer regarding side effects. (That’s been my experience) Demand that your GP run a CMP, CPK and ESR. The drug takes 90 days to leave your system and hopefully, your side effects will subside.
With some people that have had myopathy (true statin myopathy) it is not a matter of IF you develop necrosing myopathy, it is when. I took it for 8 months before the myopathy began, two years later I am still fighting the land slide it created. Some people cannot have their cholesterol altered. Have your GP run some genetic testing. Blurb from an article:
Moreover, certain genetic factors may increase the risk of experiencing statin-induced muscle toxicity. One of these is a common single-nucleotide polymorphism in the SLCO1B1 gene, which is associated with a higher risk of myopathy.
Max, I am SO SORRY to hear you are still dealing with problems 2 years later! I cannot imagine how that must feel-physically and physiologically. For me, I never tried Repatha. It was someone I know who did and had really bad muscle pains that lasted for several months. I will say a prayer that the landslide of effects you are experiencing, goes away soon.
Hi Max,
Your information is helpful! Did you get myopathy from Repatha as well?
Thanks,
Becci
Hi Pete, they most certainly do have genomic testing don’t let them tell you they don’t. But as I told you the rule of thumb is that if you have had a statin associated myopathy it is not a matter of if you will develop necrosing myositis by taking another cholesterol medication it is a matter of when. It’s my belief that some people cannot have their cholesterol altered I am one of those people but developed necrosis myositis due to an ill-informed doctor. they are not up on these latest medications but they certainly are willing to prescribe them. You can demand genomic testing and if you are unable to take statins I would not try any others. IMNM causes distal weakness you are unable to stand up without lifting yourself up with your hands, your legs are weak your arms are weak and you have to take very strong immune suppressants. I wish you much luck and safety in the scary world of biologics. It isn’t just myopathies they can turn your immune system completely around and I have met people that have developed lupus, Raynaud’s phenomena etc.
Statins cause the damage and the damage can be right away it can appear five years down the road after you’ve stopped statins it can appear 10 years down the road but it will appear if you take another statin medication and you have had a true statin myopathy it’s not if it’s when will you develop necrosis myopathy? If you have severe hip and leg pain and you are very weak have a muscle enzyme study done and your CPK and your ESR.
Linda, I am 6 weeks since my 3rd and last Repatha injection. I’ve had 2 emergency room visits and was admitted 2nd time. Pain and stiffness so bad I couldn’t get out of bed. 2nd visit was in ambulance as I couldn’t get to a car. My pain was in my shoulders and upper arms and hips going down my legs. Pain medication did little to help and ended up on a heavy steroid dose.
I Was tapering down and as I got to 20 mg a day. On week 5, the pain came back and Dr increased me to 30 mg for 2 weeks longer then will try to taper again. Says it’s taking longer that he thought it would.
This drug has been one of the worst experiences of my life. I’ve also had bypass so really wanted it to work since statins caused me muscle pain and felt this was a last chance. Like you, my cardiologist and my GP was very surprised at the effects this drug had on me. They are a believer now.
It caused me to lose about 45 lbs in about 4 weeks, losing 20 was ok but I didn’t need to lose more and felt like my muscles melted away. I was active and used to be a weight lifter so had a good muscle base. I can’t believe it when I stand in front of the mirror now.
I’m 65, thought I looked 55 before, now I think I look and feel 85. Good luck on your journey. I did report to the FDA and they are calling me Monday to talk about my experience with Repatha.
Taylor, I hope you will write back to let us know how your talk with the FDA went. I’m glad you reached out to them and equally glad the FDA is calling you.
Joe, I had an hour-long conversation with a Dr. at the FDA. She mostly wanted to know my experience with Repatha, and how the hospital treated it, and their diagnosis on discharge. The hospital didn’t list Repatha as the problem, just severe muscle and joint pain.
My GP put polymyalgia rheumatica on my chart. He also suggested I see a rheumatologist to get an opinion from them about long-term effects of it. The FDA wanted to see all the paperwork from dr and hospital so I gave them permission to do so.
Other than that she didn’t give any answers on how to deal with this, how long things might last, or long-term problems. I’m approaching 8 weeks since my 3rd and last injection, still have pain as I taper down on the steroids, last week I had to increase them as the pain was pretty bad, so dr said to increase for a week the try again.
I lowered it 2 days ago and pain increases, but not so I can’t deal with it. I am walking more, trying to get some muscle back, so that’s positive. When I move my arms up the joints feel like Rice Crispy snap, crackle and pop which is new to me.
Anyway, just wanted to update you and the others on things. My daughter got on Facebook thread about this, as I’m not on FB and she sent me screenshots of people’s messages and there are quite a few similar stories. Several references to it being a poison, although I’m sure it’s good for some people, it’s not forme. I’ll be in touch.
Taylor
Taylor, thanks so much for the update. That’s so interesting the hospital didn’t mention Repatha as a possible cause of your pain. I’m glad to hear the FDA is taking steps to look into what is happening. It’s so interesting you said your joints are snapping and cracking. That sounds similar to what Oliver said the other day after taking 1 Praluent injection. Glad to hear you are starting to get more active. I know the pain will eventually go away. Try to stay positive.
Hi Taylor, did the hospital run blood work for CMP, CPK, ESR? You need those results especially if you have had issues with statins. They will tell you it cannot be the biologic, yes it can, it can be any cholesterol altering medication. Demand that blood work and read about myopathy from statins & cholesterol medications. I reported this to the FDA 2 years ago…I am still sick.
Max, when you reported this to the FDA, did they ever follow up with you personally to gather more data?
Take this to your doctors, it’s one of many studies finding muscle damage.
https://databankws.lareb.nl/Downloads/Signals_2018_PCSK9%20inhibitors%20and%20myalgia.pdf
Taylor I am so sorry about your experiences. Please let us know what the FDA has to say. Something needs to be done with all of these side effects. Better information so we can make informed decisions on our own health. It certainly seems to be this miracle drug for alot of us are not miracles, they are causing more problems and pain than believed.
Joe,
You may recall that I wrote to you awhile back, regarding my own experiences with Repatha. I found the same responses from the doctors I saw, as Taylor. No one was willing to accept the possibility that Repatha was the cause of my extreme muscle pain and discomfort.
So I was referred to a Rheumatologist and proceeded to have a battery of blood tests, all of which showed no indicators of arthritis, which my primary doctor first thought was the issue.
Despite no signs other than pain in the joints on my hands, both doctors diagnosis was osteoarthritis. This is apparently a catch-all for anything they cannot definitively diagnose.
Since stopping Repatha, my primary doctor started me back on a very low dose of a statin, which seems to have stabilized my cholesterol at an acceptable level. Like Taylor, I have also reported my issues with Repatha to the FDA, but to date have not received any feedback from them.
It will be interesting to see what information Taylor receives.
Looking forward to a follow-up.
Regards,
John
John, yes I remember. I can’t imagine how frustrating all this is to everybody who has been dealing with these issues. It’s encouraging to know the FDA is calling people to look into this. Hopefully maybe next year there will be a warning about muscle pain for Repatha and Praluent.
Hi I hope that you’ll read the comments that I have made in some of the replies. Anyone that has had a true statin associated myopathy will develop my apathy again with any cholesterol medication it does not matter if it is a statin or repatha.
The statin set you up for the myopathy and it doesn’t matter if it’s 5 years later 10 years later you will develop another myopathy which sounds like that’s what you’ve done.
Your body can’t deal with it it is genetic they do have studies to find out which statin you can use and for those of us that develop myopathies we can’t use any of them. I’m going to suggest that you ask your doctor to do a CMP muscle enzyme studies and check your CPK it sounds as though you have some type of myopathy going on.
And by the way you need to let me back up if you have a true myopathy whether it is necrosis or not that’s only discovered in an MRI or a muscle biopsy but if that is the case you need a strong immunosuppressant and then the steroid is secondary. Don’t let them leave you on a steroid like they did me and they caused osteoporosis.
Read about toxic statin myopathies and IMNM. and don’t deal with the doctors because they don’t know anything and Amgen certainly doesn’t want to state that their medication is damaging people I have seen people develop lupus Raynaud’s phenomena and several others and it does have the ability to damage your immune system. Deal with the FDA and ask them if there has been a case of immune mediated necrotizing myositis.
What immunosuppressant did you successfully take? Did it bring remission? Also, can you elaborate on the genetic testing you are referring to?
I have been on steroids for 2 months. All lab results (CMP, CK) were normal; no necrosis. Inflammation markers were elevated, however. Was diagnosed with polymyalgia rheumatica, but after follow-up with a rheumatologist and reviewing that low-dose prednisone does not relieve pain, have a presumed diagnosis of giant cell arteritis. Have a CT scheduled for next week and will most likely be prescribed Actemra with prednisone.
Hi Taylor, lab results do not tell you if you have necrosing, that comes from muscle biopsy or an (MRI can detect some things.) Of course, your labs are normal now, you are on high dose steroids (Watch for osteoporosis.). You don’t In my opinion have PR…I will bet as you back that steroid down your AST, ALT, ESR and CPK rise.
Your CRP may or may not be elevated. I doubt you have GCA either but they can convince a person of anything. I really can’t be of much help, you should research statin-associated myopathy and Immune-mediated necrosing myositis.
Every time you attempt to back off the prednisone, your markers will rise (AST, ALT, ESR and CPK ) and the pain begins again. Remember, you will have inflammation, muscle weakness, etc. I have been on this journey for two long years, it’s sad when you learn more than the doctors that prescribe it or the attempts to treat a condition that is different and not in their box.
Why are you back on a statin? The rarity of these diseases is what causes them to stay in their box. People have developed lupus, SS, Raynauds, etc. using Repatha. I have grabbed snippets of illnesses people have developed due to this drug. To answer your question, Repatha caused my immune system to go haywire that is besides the IMNM, I know face infusion medications.
Please read on the two diseases (statin myopathy and IMNM.) You are your own best advocate, don’t believe all you are told. I posted a link that Joe also downloaded the file, grab it, and read. I wish you luck.
I have been taking Repatha for 3 years. It has done a amazing job at lowering my LDL. But! I have put up with the muscle pain in my legs that has gotten progressively worse to the point my leg muscle feel like rubber and very weak. My cardiologist said that they don’t have anybody else complain of this and my regular doctor just kind of shrugged his shoulders and say you just got a put up with it. It also gives me back pain and I just don’t feel like doing anything anymore.
I’m 62 years old and trying to take good care of my health but like all the Statin drugs I have been through, They all give me muscle pain and muscle problems too and joint pain. I feel miserable and just wonder how long it will take to feel better.
Al, I feel awful to hear about the pain and other issues you are dealing with. I wish I had an answer. As you can see from the comments here you are not alone.
Hi,
I’m in a similar situation–statin intolerant and, apparently, Repatha intolerant (severe leg muscle pain).
My primary has suggested trying Praluent. I’ve only come across anecdotal info.–two
individuals who had bad luck with Praluent, as well. Is the gentleman who has successfully
shifted to Praluent still pain-free? Is there a thread for anyone who has gone this route?
Thanks.
Pete, the last time I asked him he was pain free after switching to Praluent. Like Repatha, this may vary from person to person. Other than that person I don’t know anyone else who switched from Repatha to Praulent. I can understand your reluctance given the pain you have been through. Have you tried any supplements to lower your LDL levels? My guess is supplements would be less effective than Repatha/Praulent but you’d know in a month how well they were working
Both Repatha and Praulent work by knocking out an enzyme called PCSK9. Berberine is the supplement some say is a natural PCSK9 inhibitor. I’ve looked into this. Here is my review of berberine
https://supplementclarity.com/can-berberine-inhibit-pcsk9-and-lower-cholesterol/
I also did a podcast episode on this too:
https://supplementclarity.com/podcast/supplements-that-lower-pcsk9-and-ldl-levels-fact-or-fiction/ (my podcast is called Joe Cannon Health)
Joe, my response was to the post in which the fellow’s cardiologist said it was impossible for him to be experiencing problems due to Repatha. Mine had the same problem as I did but was willing to tolerate injections every several months. I wasn’t . It took at least,three months before I recovered, perhaps even longer. To his credit my GP believes me.
Arturo, so happy to hear your GP blieves you were in pain.
I’m a 71 year old male, and I started on Repatha back in April of 2019. I started to have noticeable muscle pain about 2 months ago. I’m meeting with my doctor next week to discuss stopping the medication, because of the pain. My cholesterol was never off the charts, but because I was not able to take statins, due to muscle pain, he put me on Repatha.
I’ve exercised regularly for the past 20 years and I know my body. This pain is not related to my workouts. In fact, it’s causing me to reduce what I normally would do.
I think Repatha is a great alternative to regular statins, but for me, it just isn’t working.
John, thanks for sharing and I’m sorry to hear about the muscle pains you are experiencing. When you see your doctor ask him/her about a supplement called Citrus Bergamot. Here is my review of it: https://supplementclarity.com/bergamot-cholesterol-review/ There are some studies showing it lowers cholesterol.
Let us know what happens next week.
Joe,
Follow up report………………
Met with my cardiologist today. He says that it is scientifically impossible for Repatha to cause muscle pain because of the path of the medication, which is totally different from that of regular statins.
After a lengthy debate, he agreed to let me come off the medication for 3 months, and then reevaluate my status and cholesterol numbers.
I would like to hear your opinion on his comments.
Regards,
John
John, I can only say I personally know someone who dealt with severe muscle pain after starting Repatha. The pain started about a month or so after he started Repatha and continued for a couple of months or so after he stopped. It took time but he’s no longer having any issues thank goodness. If it helps, he’s since switched to the other injectable cholesterol med (Praluent) and has not had any problems.
If you look through the other comments you will see others saying they had Repatha-muscle pain too. While the pain may be a rare occurrence, it has happened to people.
What did your cardiologist say about the muscle pains you were experiencing after you started Repatha?
Joe,
I was somewhat surprised by his reaction. He became very defensive, and kept saying that there was no scientific proof to support my claim. I think he felt like I was questioning his authority, or maybe he just felt like I was wasting his time.
At one point I said ” well if its not the Repatha, then what is it?” He said he didn’t know. I’m seriously considering finding another cardiologist. I have stopped the Repatha for the next 3 months, at which time I’m scheduled to have another blood test, and return for a follow-up.
As I continue my research, I’ve found a link between cholesterol-reducing medications and increases in vitamin D levels, which would display the same symptoms. I’m having a blood test tomorrow to determine my vitamin D level.
John, I wish I had an answer for you on this issue with your doctor. I know doctors have a tough time dealing with patients’ questions -and I’m sure the “I saw this or that on the internet” question gets them rolling their eyes sometimes. Have you tried the bergamot yet? Some studies have shown an association between low vitamin D levels and elevated cholesterol triglycerides and LDL cholesterol. An association may not mean they are connected to each other but if you’ve never had your D levels tested, its good info to know. Let us know what happens.
He said, “Get the hell off it.” My GP says I’m the only one of his patients to have such a reaction. Im no longer experiencing severe muscle tightness and pain. Am contolling cholesterol via exercise, niacin, Ezetimibbe and Verapamil
Arturo, Glad to hear your cholesterol levels are under control -and you’re no longer in pain 🙂 How long did it take for your pain to go away after you stopped Repatha?
2019 11 18 Response to Repatha/Statins comments:
I am a 66 year female living in Salem, OR. I became hypothyroid about age 40 and also developed high cholesterol levels. During that time until about age 55, I tried about every statin on the market and also tried Niacin – all with ill effects of muscle & joint pain and ill-feeling.
About 2016 Dr had me try Praulent for one or two doses and suffered severe headache and stopped. In Oct 2017 Dr started me on Repatha. First injection, I didn’t notice anything unusual. After the 2nd injection, I had a very severe site inflammation 5-7” across, red, hot and knot in the tissue that persisted nearly a week. After 3-4 months, started noticing muscle weakness and joint tenderness. Then lack of sleep due to what seemed like a severe muscle quivers at night and overall inability to sleep and get rest.
After 10 months, I started feeling just plain ill and asked the Dr if I could stop and did in Aug 2018. It was 3-4 months to start to gain some improvement. I have also been in Physical Therapy for 4/5 months to improve my walking gait and try to address muscle tone/joint pain.
It has now been 2 plus years since starting the drug and over a year since stopping. In that post-Repatha therapy time, my hip joints have become significantly inflamed, severe muscle spasms and irritated to point that in Sept 2019 after an MRI, indicated severe osteoarthritis in both joints pointing me in the direction of hip replacement.
Last week I had cortisone shots in both hips to give me some temporary relief while I wait for a surgery date in Feb 2020. I have not been tested for Toxic Drug-Induced Inflammatory Myositis – so where in the PNW may I get a referral to a specialist for possible Rx? I am still suffering from a lack of good rest at night which in itself leads to fatigue. Is there treatment available to overcome these symptoms?
Laurene, I’m so sorry to read all that you have been going through. The only “treatment” for post-repatha muscle pain I’m aware of is time. This seems to be something that eventualy gets better. The person I know who developed muscle pains took about 6 months before he started to feel better. I wish I knew of someone in the pacific northwest (PNW) where you could find a specialist. Have you asked your primary doctor about getting tested for myositis? She/he may have some ideas on who you can go to.
Does anyone here of any insights for Laurene?
Hi Laurene,
I can only testify about the connection between Repatha & muscle pain that I experienced. Like you, I went through several statins with very bad effects. There was a stretch of time–about 6 years–where it was very painful to walk. Eventually it abated, but I had a similar experience with Levaquin.
I was very hesitant to try Repatha, but after 5 years on a vegetarian diet and 3 stents, my LDL was rising. About 10 weeks ago, I started Repatha.
No problem after the first 2 injections until the day before the 3rd. My right leg became exceptionally sore and walking became difficult. I also began to experience a rash. For these reasons, I decided to stop treatment and not opt for another (i.e.3rd) injection. I took neurontin for about 3 weeks to deal with the pain. That dissipated, but I still feel weakness and soreness when I walk more than a mile. I still have the rash.
I was sad to have to give up the treatment, as my LDL had gone from 135 to 45 in that month I was on the med. I just felt that the pain was not worth the better cholesterol numbers.
Best of luck to you.
Pete
I developed serious (hip) pain shortly after starting statins. This was close to 25 years ago.
The pain stayed with me for years, after I stopped medication. After developing CAD, I put myself
on a restrictive vegetarian diet. While it brought the LDL down somewhat, I still needed 3 stents.
A month ago, I started Repatha, when my LDL reached 135. After the second injection, I had a twinge of pain, again in my hip, reminiscent of my statin experience. I’m now due for my third injection. Is anyone aware of muscle pain actually disappearing if a patient continues with Repatha? Most of what I read suggests it only gets worse as time goes on. Thanks.
Pete, the person who I know who took repatha – who inspired me to write this article – is now pain free. It took several months for the pain to subside after he stopped taking repatha, but he is 100% back to normal now.
I took my 3rd injection, was a little sore in my hip flexors but was hoping it would go away. Within a few days, could hardly walk, shoulders and arms we hurting and stiff. In the next week, had 2 trips to ER in extreme pain, 1 in an ambulance as I couldn’t get out of bed. I’m about 4 weeks away from last injection, on heavy doses of steroids, still in pain, walking hard for me.
This has been the worst experience of my life dealing with health. Both my GO and cardiologist said they had never seen this before
Taylor, so very sorry to hear how you have been suffering! From what I can tell, whether someone has pain with repatha seems to vary from person to person. That may explain why your primary doctor and cardiologist have not seen it before. If you read through the comments here there are people like yourself who have been been in awful pain. I personally know one of those people. Have they mentioned switching to Praulent? That’s the other injectable med. The person I know who tried it does not have issues with that medication.
As an aside have you looked at natural ways to bring your LDL down? While I don’t know your personal health issues, I have some suggestions if you’d like to hear them.
Hey Joe, at this point I am reluctant to try any more medication for cholesterol. I’ve had bad experiences with statins all along, and now this, so I’m going to work on diet and hopefully I will be able to exercise again. I was walking 2-5 miles 3+ days a week and some strength training. I’m up to 50 yards now, so got a ways to go. I am interested in ways to improve my cholesterol numbers. Thanks
Tayolor, I think you are already doing the best things by altering your diet and exercising.
As for supplements there are several options Here are some things that may help. These reviews go to my other website:
Bergamot. Here’s my review: https://supplementclarity.com/bergamot-cholesterol-review/
Aged Garlic Extract: Heres my review: https://supplementclarity.com/kyolic-aged-garlic-extract-review/
Berberine has some studies too: here’s my review: https://supplementclarity.com/can-berberine-inhibit-pcsk9-and-lower-cholesterol/
Here’s 9 ways to lower cholesterol: https://supplementclarity.com/natural-ways-lower-cholesterol/
That review also mentions Red Yeast Rice which contains a statin compound. Some have reported side effects with red yeast rice
I have some other ideas too if you want to hear them.
Hi Joe, My cholesterol numbers are so high I tried most of the statin but always had muscle pain – so I started taking RAPHATA July 2018; I didn’t have side effects at first, then slowly I notice my legs would hurt to the point that I could not walk. It was weird, I didn’t connect it till later.
A month ago I got super dizzy. I’ve had vertigo before so I though it came back. But the dizziness lingered. My left Breast had be painful on and off, I’ve never had pain there before. I got a mamo and ultrasound and everything looks ok. My doctor asked if I wanted to stop RAPHATA and at first i didn’t but now that my dizziness won’t go away and my blood test came back to show my platelets are off.
Going to a blood doctor next week. I’m glad this is a viable for people to comment and compare to validate that I’m not going crazy with my side effect.
Mary, sorry to hear about the difficulties you have been experiencing. I must say breast pain is something I have not heard of before so thanks for sharing this. I will be interested to hear about what your doctor thinks about your blood platelet count and other symptoms you have been experiencing. Do let us know what happens.
I am 63 years old. I have been taking Repatha since October of 2018. I have had stents put in and although I have been taking Statins for years my cholesterol is still high.
The Repatha has really lowered my cholesterol but in the last 6 months i have noticed a major increase in pain and cramps in my legs and buttocks.
I actually went to an Orthopedic Doctor thinking I may need a hip replacement but he said i did not. After reading all the information on this page I am convinced the Repatha is causing the problem. I am at the point now that the pain actually wakes me up at night.
I guess the question now is should I live with the pain or risk blocked arteries. The rate I am going right now I want be able to walk .
Roger, sorry to hear what you are going through. Did you discuss repatha causing muscle pain with your doctor when you saw him? I think that’s a conversion that you should have.
While I’m not a doctor, I can tell you the person I know who experienced muscle pain after taking repatha, now takes Praluent (alirocumab). Hes told me hes not having any muscle pain since he started taking it. Maybe switching from Repatha to Praluent might work for you too?
please let us know what your doctor says?
I took two doses of Repatha back in November of 2018. After the second dose, I wound up with neck spasms so severe that I was bedridden for for several days. I refused to take it again even though my doctor’s office said it was not on the list of known side effects.
I’m back on a low dose of statins to see if I can lower my numbers a bit.
Glad to find your website – it gives me some sense that I was not totally crazy!
Hi Sharon, thanks for sharing and you are not crazy. I’ve talked to people with muscle pain after taking repatha and have seen it personally in somebody I know. I think eventually muscle pain will be recognized as a side effect.
For your cholesterol, have you looked at Bergamot? It’s a supplement with some research. Here’s my Bergamot review.
I have tried Bergamot but it didn’t do anything to reduce my cholesterol levels. I’m hoping that lower levels of simvastatin will lower my cholesterol – maybe not to ideal levels – without the muscle pain.
Sharon, I do as well. Sorry Bergamot did not work for you. Some have told me they had good success with it. Like many things, results can vary. Have you ever tried Red Yeast Rice? It contains a naturally occurring statin and research shows it can lower cholesterol although there have been some reports of muscle pain.
Do you exercise at all? Hows your body weight? Sometimes these things can help reduce cholesterol too.
Let us know how you are doing with the lower dose simvastatin.
Neil or Joe: My husband took 2 shots of Repatha in February 2019. Immediately after the 2nd shot, when he would go on his walks or exercise, a burning sensation would move up through his stomach, into his arms, shoulders and even into his cheekbones. Would this be the same as “muscle pain’? The pain stops when he stops walking.
Hi Joe, Checking in, finally with some GOOD news after 9 1/2 months of misery. I started on Gabapentin 300 mg a day increasing to twice and then 3 times a day starting 3/13/19. The last two days have been my best in 9 1/2 months!! I’ve practically forgotten this nightmare! Just wanted to let you know. Thanks again for all your help. Best, Neil
Neil, that is fantastic news!!!! I am SO glad to learn you are getting better! As an aside, I just saw a TV commercial for Repatha and muscle pain was not mentioned as a possible side effect. I was dumbfounded by that omission. Regardless the important thing is you are finally getting some relief. I am so happy for you.
PS, love your website! I did not know you also wrote jokes. 🙂
Thanks Joe! I’ve written for Comedy Central Roasts, Friars Club, MAD Magazine. NY Times, etc.
Yes, the gabapentin has me barely thinking about my problems with cramps and tightness. Significant change. Thanks for everything!
I took REPATHA for three months, ending November 16, 2018….then my legs got weak and painfully, hard to walk. after a month, the poison went to my shoulders. i could feel the stuff going through my body. Now, 12 weeks later it has been in my hands and fingers. Opioids only effective, can’t get it. I get up every hour or two to soak my hand in cold water. No cream or gel does any good. Left hand, constant pain. And no injections in almost three months. Yes, bad stuff for me.
Frank, sorry to hear about the problems you have been having. You mentioned trying pain relief creams. Have you looked at Australian Dream? It’s marketed to people with arthritis but it has an ingredient I have not seen in other creams. No guarantee it would help Repatha-induced muscle pain. It’s just something that occurred to me as I read what you said.
Here’s my Austrian Dream review
Hopefully your pain will soon subside. Keep us posted on how you are doing.
Please have them do a blood work up! You want them to do a CMP, CK, LD, ALDOLASE AND SED RATE. Amgen does not recommend blood work, they stated to me that is was up to the doctor.
Have them check ALL of your muscle enzymes. I have had problems since March 2018. This drug is bad news in my opinion.
I’ve been working with my trainer on it for the past four months without much success and recently started going to see a masseuse. I took it up with my GP and will have an MRI on my neck on Wednesday and will see my orthopedic surgeon in follow-up.
Once I have some results and see the orthopedist I”ll see a physical therapist. Thank you for the confirmation on the shoulder pain, since it is the only diagnosis that makes sense.
I changed my pillow, I’ve been working out regularly and I avoid sitting at the computer or tablet for long periods of time and nothing has worked.
Thus it is something I’m taking or took (Repatha).
I no longer take a statin and have been off blood pressure meds for two weeks. The only other prescriptions I’m taking are Protonix , Singulair, and Fluomax. My supplements are Vitamin B and D, Citracal, Mucinex,, Probiotics, Aloe Vera, and COQ10.
Arturo, it sounds like you are doing all you can to address the cause of the pain. Does the massage help the pain at all?
It relieves it doesn’t eliminate it. The pain and discomfort are most acute awhile sleeping and upon rising.
Arturo, as long as its helping, that’s a good thing. Lets say a prayer the pain goes away soon. Please keep us all updated.
Have you asked for a full blood work up to check for muscle damage that is probably related to the Repatha? It can cause other disorders.
I have not. Thanks for the recommendation.
Thanks so much for this information. My husband has been on repatha for a couple of months now and has started having pain and stiffness in the back of his neck. I’m thinking that it could be the repatha since that’s the only recent change in meds that he’s had.
Probably will discontinue the shot & see if it improves. There’s so little info out there like this. Thanks again for writing about it.
Darlene, Im glad to help. When I saw it happening to someone I know, I felt I had to let others know this side effect might occur. Keep us updated on how your husband is doing too.
Hi Darlene,
Please ask your husbands doctor’s do a CMP, CPK levels and liver enzymes ALT/AST. Have them check his Erth Sed Rate too. If any of these levels are even the slightest bit higher, please have him stop taking the drug. Just because the drug is stopped, that doesn’t mean it’s out of the body or has not already started another disease process, such as inflammatory myositis.
I stopped the drug in May 2018 but it was too late, I already had Toxic Drug Induced Inflammatory Myosiitis, (Amgen claims the shelf life of the drug is 90 days, in my opinion it can last much longer.) I wish your husband well. Please keep me informed.
Joe,
Thank you for the Rhabdo information. I had it for several months in 2008 and I have it now. You’re correct, any exercise must be done slowly. I’m glad your friend is well. They only discovered the myositis through a biopsy that was done (incorrectly), so the results are not exactly spot on but the symptoms certainly are.
To anyone that is told they need a biopsy, read up on it and do not allow them to take just any hunk of meat, make sure they wait 30 days after the Rhabdo is gone before doing a guided imaging to harvest UNDAMAGED tissue. (I will also add that the biopsy site became septic.)
I have been in and out of the hospital for 5 months and dealing with the insidious symptoms since about March of 2018, odd little symptoms here and there which eventually ended up being Toxic Drug Induced Inflammatory Myositis. Anyone out there that is on this drug or the combo of statins and Repatha, demand monthly blood work!
Maria, thanks for adding that information. Sorry to hear about your 2008 bout with rhabdo, your toxic drug induced myositis and the trouble you had with your biopsy. I can only imagine how much of a burden its been on you to trek back and forth to the hospital since march. Hopefully you have friends and family who can help when needed. I’d agree a biopsy soon after rhabdo may not be wise as it potentially might aggravate the situation.
I started taking Repatha in the Spring of 2018, after problems with the various other statins. I ended up with really bad muscle pain in the right leg and hip and stopped. The hip and leg pain went away, but a month later I developed shoulder pain (both shoulders) and pain and muscle weakness in my upper arms.
I’ve been working at relieving the pain and strengthening the muscle via exercise under a trainers supervision and massage therapy. The pain and weakness are not going away. My MD discounts Repatha, but I think that was the cause.
Arturo, the person I know who had pain after taking repatha, also had pain/weakness in the shoulders too. It took a few months after stopping repatha for the pain to go away. Did you have your shoulders evaluated by a physical therapist?
Hello, I was on Repatha for 8 months. (I was statin intolerant and had Rhabdo with statins.) While on Repatha, none of the doctors did blood work because it “wasn’t” protocol. The side effects from Repatha are insidious.
I now have Drug Induced Inflammatory Myositis. This is horrific, they have yet to treat it properly, the inflammation is destroying my body, the treatments they are attempting are very destructive.
Maria, oh my goodness, Im so very sorry to hear you are going through all this! I cant imagine how stressful this must be for you. I’m amazed checking blood work is “not protocol” for repatha. They check blood with statins dont they?
What are they doing to treat the drug induced myositis?
They do blood work for statins, but not Repatha. I believe those protocols are changing now that they are seeing muscle damage and Rhabdomyolysis. My CPK was 2006 at one point with the ALT, AST triple the norm. Aldolase was 46, which is indicates muscle damage.
So far, they have given high does Prednisone which is causing other problems and as they lower the pred, my numbers just keep going back up.
Repatha has very brief trials and they are now seeing problems. Doctors are now doing blood work or some are. As a former statin Rhabdomyolysis patient, they should have been checking my blood. This is frightening because no one knows what will happen next.
The onset of Drug Induced Inflammatory Myositis is indigenous once you have developed it, it does not go away just because you stop the Repatha. This has been going on for months.
Maria, yes I’d hope the protocols were changing. I suspected Repatha etc carried a rhabdomyolysis risk. not sure how their rhabdo risk compares to statins. I also wondered about the trials too. These drugs seem to come out of nowhere. I figured since I was not in the loop I missed something.
In case you didn’t see, I wrote a book on rhabdomyolysis and exercise. If you workout, just start new exercise programs and classes slowly to reduce your risk of future rhabdo. Often people get rhabdo when they jump into exercise, doing too much too quickly.
The person I know who was taking repatha had really bad muscle pain for months. He was not diagnosed with inflammatory myositis. His doctor just said to stop taking it. I saw him today and fortunately his muscle pain is gone. He had it really bad for a few months. I dont know how he functioned.
I have been taking Repatha for approximately 9 months along with generic Zocor. For the last month and half I have been experiencing severe muscle pains in my calves, neck and back. The Repatha’s results were amazing, getting my LDL down to 51.
I have been taking the highest dose statins for years and have never been able to bring down the LDL, even below 130. Statins have caused me muscle ache/pains; however with taking COQ10 and 80 mg of Zocor, I was able to tolerate the pain.
However now the pain is so severe, I am unable to exercise, sleep and barely do anything but complain. I cut the dose of Zocor down to 20mg and have skipped it altogether for days without experience any less muscle problems.
I am trying to stay on the Repatha, however unless a miracle occurs, I will have to stop taking it and see what happens. I have not even discussed this with my doctors, knowing that even though their intentions are good; they just focus on the blood test results and do not seem to understand the pain these medications cause.
I wish I knew if the statin or the repatha or both together are causing problem and then I would at least know which one to stop or continue taking.
Hi Steven, thanks for sharing. I wish I had an answer for you. I can tell you the person I know who was taking Repatha was in so much pain I dont know how he continued to work. Others here have said similar things. The effects seem to stick around for sometime after stopping Repatha.
I’d say tell your doctor. She/he needs to know. My friend told his doctor and he was taken off of it. Hes only taking a statin now and is not in anymore pain.
Rapatha was taking a good life from me. I could not take the other drugs for the same problems. Leg pain and then my memory was to the point I didn’t know what day it was. I was depressed and at 77 l thought this must be what the end is like.
If it wasn’t that I had the same memory problem years ago, that time I couldn’t remember what I welded something up for, and I was living alone then. Wow!!!
This time The leg pain was so bad in the morning l was using a cane and could barely walk. I have been off rapatha for two months and finally coming back, I was on it for four months. Thanks.
John, thanks so much for sharing and I am so sorry you were going through all that stress. I can only imagine what you must have been going through. you bring up a good point about memory problems. Memory loss can be a side effect of statins. Can repatha cause memory problems? I did not consider this when I wrote this repatha review.
The person I know who was taking Repatha -who sparked my desire to write this review – did not seem to be dealing with memory problems and he has a very high pressure job. He just dealt with the severe muscle pain as you and others here did. Memory problems may be an individual thing?
It sounds like after 2 months, your pain is starting to go away. I’ll say a prayer you have a very speedy recovery.
I was in the original trial for repatha and have been on it for quite awhile. I didn’t notice problems at first because I was a caretaker and attributed my back problems to my lifting. There were a lot of other things also but I figured at the time I was in my 60’s and it was old age lol.
After my husband died my leg and back pain continued to get worse. I went to a chiropractor which really didn’t help and did acupuncture for awhile. Nothing was helping I went for an mri and was told I had herniated discs and arthritis and I went for an epidural shot in my back. Nothing worked.
I then started researching the meds I was on and the light went off. I am still involved in the study and spoke to my doctor and told him I would like to go off and see what happened. He told me there was no reports of leg pain from this drug.
I stopped for about two months and didn’t see a difference so I went back on and after three shots – It is now worse then ever and I have decided to stop permanently.
It has been three weeks and no difference yet. I am praying that it will improve with time. I am now 71 and my quality of life is terrible. Hopefully I have found my answer.
Hi Patricia, I really appreciate you sharing your experiences with repatha. The person I know who was taking Repatha, had severe muscle pain for a few months but it did eventually go away. He is 76 and no longer is in any pain. I cant say how long it takes for the pain to subside. I can imagine how this must be effecting your quality of life. I saw how bad it was in my friend and Dr. Neil who has left comments here has also had it pretty bad.
I am Sorry to hear about the loss of your husband. I know how hard it is to lose loved ones. I will say a prayer you recover quickly.
I hope you had a nice Thanksgiving. Do keep us posted on how you are doing or even if you just want to vent. Sometimes that helps too.
Thank you so much for your response and your kind words. It gives me hope. I will definitely post what happens. Hopefully I improve and can get on with my life.
Patricia, let’s hope and pray you have a speedy recovery. Try to have a good week and Christmas.
Thank you so much Joe. I also wish you a great week and a wonderful Christmas
I’ve taken statins for 25 year and have severe cramping- toes, ankles, behind knees, calf, hands, abs. Not glutes not quads, but very severe sartorius. I have switched statins three times, no change. I reduced my dosage and am taking it only 3x per week now. LDL is still in check at 110. I’m switching over to Repatha tonight. After reading the above, this change makes me nervous.
Bruce, I hear ya. I don’t know how prevalent the muscle pain with Repatha is in the general population. I can only go by the person I know who was in awful pain for months. Neil, who has posted several comments about his problems with Repatha, has also went through some awful times as well. Fortunately, the person I know is pretty much back to normal now. Hes been using a combo of a statin and Praluent and has had no problems.
My only advice is to talk to your doctor and see what she/he says. Have you ever looked at things like red yeast rice or bergamot? Red yeast rice contains a natural statin and while some have had muscle pains with it, others have told me they did not. Bergamot has some cholesterol lowering research too although. I’d like to see a couple of other studies on it: Here’s my review on that https://supplementclarity.com/bergamot-cholesterol-review/
Bruce, if you try Repatha, please let us know what happens.
Neil, how are you doing? Has your pain subsided?
Pain has subsided about 95%. I’m using praluent. cost varies w medicare, ranges from $132 per month down to $36 per month with supplemental policy. Cholesterol is way down. I stopped statins completely due to the muscle pain/cramping, but cholesterol went up to 220.
Now I’ve been on praluent for about a year and cholesterol is about 90 (total) and I’m playing six sets of singles tennis each week with little or no muscle cramping, when it does occur, it’s in my feet, toes, and ankles, seldom in calves or higher.
Bruce, that is terrific news! So glad to hear Praluent is working so well for you!! Your cholesterol is lower than mine is! 🙂
For 15 years I took all statins that exist and all of them same end results (muscle pain, weakness and etc ). When I started Praulent it was only minor side effects like runny nose, chilly.
But after 1 years suddenly appeared others: connective tissue problems like Drop Foot, Hernia, intercostal tears. I stopped taking it and when I tried to talk with doctors, all did the same – they’ve heard of no such complaints and nobody believe me.
Mariki, thanks for this information. The friend of mine who originally told me about Repatha causing pain has recently started using Praulent. So far, hes not in any pain with Praulent but I will keep this in mind just in case he experiences any weird side effects going forward.
Joe, Just wanted to report that I decided to try a short course of steroids for the excruciating cramps and muscle pain caused by Repatha for seven weeks since my injection. After just one day I am 90% improved. No cramps or tightness, pain very minimal. So inflammation is the culprit. Just last week I was considering stopping work; the pain prevented me from even thinking straight. Thanks for your help on your website!
Hey Neil, thanks for letting me know! I am so glad the steroids helped you! I don’t think my friend was ever given steroids. I’ll mention this when I see him. Hes slowly getting better (it’s been over 13 weeks now for him). So glad you are able to get back to normal again.
Update: Steroid benefit was short-lived. Still suffering with muscle pains and cramps, especially upon standing up. Symptoms seem to get a little better when I move around; standing in place really hurts my feet, quads, and behind my knees.
Endocrinologist says longer term steroid use would be detrimental, he thinks problem will resolve once Repatha is completely gone. He did an aldolase (muscle enzyme) test which was normal.
There are many people in a Repatha Facebook group who complain of these symptoms.
How’s your friend doing, Joe?
Hi Neil, My friend is doing much better. His pain has drastically improved. There has been a very dramatic improvement this month from last month. Its like night and day. His range of motion has improved, hes able to get up and down without pain and he said he can even put his shoes on now much easier than last month. Like you he said the pain was much less later in the day than it was in the AM.
It sounds like his may be something that just needs to run its course with you. My friend had the pain for in excess of 13 weeks after stopping Repatha. I did not know there was a facebook repatha group. Thanks for the heads up on that.
Hopefully you are on the other end of this and you feel better soon. I can only imagine how frustrating this is for you. I can tell you it will get better. I have seen it get better. Do keep me posted.
Hi Joe, Very happy for your friend! And I’m frankly very happy I found your website. It’s one of the few things that has comforted me during this mess. It’s great that you show such an interest in a topic that big pharma probably couldn’t care less about, perhaps even avoids discussing.
Yeah, it seems like the three month point seems to be when some people turn the corner on this. I’ll keep you posted.Best, Neil
Neil, thanks for saying that. I will say a prayer you get better quickly.
A very interesting article, and the personal experience comments are very interesting, too. It really helps when people who take the medication tell about what they experienced! Thank you, everyone.
I was prescribed statins years ago, but after reading and hearing about the flu-like symptoms and the muscle pain, I didn’t take it. Thankfully, I was at the stage where a pretty strict diet decreased my cholesterol/LDL levels to normal. I think it’s also important to take the HDL/LDL fraction into account. I think that’s the right fraction, but maybe the doctor who commented can tell me if it’s wrong.
It’s a hard issue to decide-do you want to risk CV disease or do you want to feel awful all the time from the side effects?
Hi Roseann, good points indeed! I’d be interested in seeing what doctors say about this too. I was just calculating my ratios (I keep them on a spreadsheet – I’m OCD as you can tell lol). From my readings, HDL/LDL ratio is good if its greater than 0.4. The non-cholesterol should be less than 130 although I saw a reference from Dr. Pritikan (pritikan diet fame) that it should be less than 100.
Another ratio is the triglyceride to HDL ratio. From what I’ve read less than 2-3 is good.
Very interesting article. I just received my second injection and the pain is real. I brushed it off to the exercising I do but there is no mistaking it now. I have a friend who writes about big pharmaceutical companies. Says we are being lied to. These drugs are worth billions to them so they hand them out like candy.
Truth 1 – cholesterol is not connected to food and 2. Very few people actually need the drug, if any. I’m at 300 with a HDL of 95. I will give this a try for two more shots then stop using again.
I guess we won’t know who is right until it’s too late
Hi Kathy, thanks for sharing and do let me know what happens after you take 2 more shots. It’s very interesting what your friend told you about us being lied to about Repatha.
My friend has recently started taking Praluent for his cholesterol. So far he has not noticed any increase in his muscle pain (that’s good). Its been over 13 weeks I believe since he was taking Repatha and only now does he feel the pain is starting to get better. He is still in pain though. Very odd what seems to be happening with Repatha.
Thanks very much, Joe!
I’m a physician/patient who couldn’t tolerate statins due to severe muscle pains, particularly in feet and legs, weakness and flu-like syndrome that lasted for months after discontinuing. I tried Repatha a year ago and had severe itching after 5 injections. I just started it again in mid May, 2018 and 5 days later (as soon as it’s supposed to peak in the blood) began to get the exact same muscle pains, flu-like syndrome, and weakness that I had had on statins.
Neil, thanks for sharing what happened to you. while my friend is still having issues (13 weeks since he stopped taking repatha), the pain seems to be slowly getting better. His cholesterol and LDL are increasing and doctor is suggesting he try Praluent. Hes heard it may cause less muscle pain. I will update this with what happens after he starts taking Praluent.
I started out with Praluent, after not being able to tolerate statins. After 5 days started to have muscle pain in thighs, arms and hands, tolerable but not happy. I was using every two weeks dosage. A couple of days before my second injection, I woke up with excruciating pain in muscles all over my body, at 2am.
By 8m I was on the phone with my doctor, he said “DO NOT use next dose. Let’s wait a couple of weeks and I’ll have you try Repatha. Had similar side effect, not as painful but had weakness associated. Used 2 doses. Stopped using.
I’m now seeing a lipid specialist at Stanford, who said I should’ve never been on any of these meds. My numbers aren’t high enough for such aggressive treatments.
Taking Colestipol now (it works in the gut so no possibility of muscle pain) along with Metamucil (which helps lower cholesterol by 10%) and I couldn’t be happier!
Liz, thanks for sharing and especially for mentioning Praluent. The person I know who had bad muscle pain switched from Repatha to Praluent and seems to be doing ok – although he did mention having some muscle pain recently, not anywhere as bad as with repatha. Ive wondered if Praluent might have similar side effects as Repatha so I really appreciate you sharing this.
So glad you got to the Stanford lipid specialist! I wonder if the TV marketing has been driving the recommendations of Repatha/Praluent?
Yes Metamucil is great so glad you are having good results with it and Colestipol
Here is my metamucil review
Currently on my third dose of repatha and I have muscle pain in my buttocks, thighs and calves. The pain in only in the right leg, which is the leg that I inject the medicine. I am 1 yr. Post OP. Open heart pt. I tried every statin out there I couldn’t tolerate the excruciating chronic muscle pain.
I thought this drug would be the one for me, right now it’s a wait and see. I investigated and asked all the right questions regarding repatha side effects.
Everyone assured me that at worst I’d get cold-like symptoms. This pain is the same as statin pain, except only in the injected leg.
Joyce, sorry to hear you are having pain. Have you spoken to your doctor about this? Have you ever tried the other drug called Praluent? The person I know who had repatha- muscle pain now takes Praluent and isn’t having any issues. Everyone may be different but it may be worth a talk with your doctor.
Keep us posted on how you are doing.
So what number does the lipid specialist want maintained??
i had severe pain in my glutes, hips and legs on statins, and switched to ezetimibe and felt no pain. doctor thought i would get great results from repatha so we are testing now.
draw backs I feel are extra tired and the pain in glutes hips ect is back. its been 5 days since injection and it takes 2 hours a day to stand up straight and have less pain. 1/2 vicodin calms things down but that’s a bad band aid.
Jim, thanks for that feedback. The person I know who inspired me to write this has been off repatha for 11 weeks now and is only now starting to feel a little better. He still has leg pain but is moving better than he was last month. His doctors cant find any other reason other than repatha. I dont know the half life of repatha or how long the muscle pains can last after stooping. Its odd your dr would switch you to repatha when you had no leg pain with ezetimibe. Why not just stick with ezetimibe? I hope your pain eventually feels better. let me know how it goes.
Half life is 11-17 days. I have the exact same symptoms, began, 5 days after one injection. (Drug peaks in blood after 3-4 days.)
Neil, thanks for that information!
Neil and Joe: My husband, after taking a 2nd Rapatha shot, began having pain (he calls it a burning sensation) arise through his stomach, up into his arms, shoulders, and even into his cheekbones whenever he would take his walks or exercise. The burning sensation subside when he quits exercising or walking. He is a 7 mile a day walker and has NEVER experienced anything like this.
We are in week 6 of NOT taking the shot – have you heard from anyone else the burning sensation or is this what is meant by muscle pain?
Hi Maria, The person I know who had repatha-pain, felt it even he was sitting too. It did not happen only when he exercised. Has your husband talked to his doctor about this? Has he ever gotten a stress test?
I’m a 62 yr old M.D./patient with a very similar story. Five days after my first Repatha injection three weeks ago I began experiencing muscle spasms which have become severe. Repatha peaks in the blood after four days. The half life is 11-17 days. I took 2.5 mg of oxycodone last night and felt fine for four hours. Deciding on course of treatment now.
Neil, thanks. My friend has told me he has a prescription for for cannabis for pain (arthritis pain). He has not obtained it yet. If it helps any, I’ll let you know.