Has severe back pain and muscle weakness occurred since starting Repatha?
Question posted by Ola May VanDette on 6 June 2016
Last updated on 22 February 2024 (12 weeks ago) by Jbc25
10 Answers
I have been on a variety of statins over a period of 20 years and have had to stop each one after several years because of terrible muscle pain. My doctor recently put me on Repatha because he said that it doesn’t cause muscle pain. Wrong! After my second injection the pain started again and it’s been more severe than on the statins. Plus, I’m very fatigued and my balance is off. I contacted my doctor who said muscle pain isn’t really a side effect, but he agreed that I should stop injecting for a month and try again. I’m going to wait until the pain is gone and then will only do one injection a month to see how I react. I’ll have my cholesterol checked after 6 weeks. If the pain comes back I won’t continue the injections, but I have no idea what my next step will be. I wish the doctors would listen to the people are using this drug. The pain is real!
I started Repatha after a 100% blockage and HA in 2018. My LDL is very high and statins gave me terrible muscle weakness, etc. That was a long painful journey in itself until the cause became clear. Then I started having serious muscle pain in my upper body, etc. but when I woke up after stent surgery that pain was totally gone and cardiologist said it was angina. I was so ready to finally be pain free. Instead, I started having intermittent severe muscle pain in knees, hands and back. For example, I'd be walking normally and suddenly my next step caused severe pain shooting up into my knee, could not bear my weight for days or weeks at a time. Happened in both knees. Tendons around my thumb would suddenly just sprain, once in my sleep! The back pain was intolerable, only being on ice day and night got me through.
I know better than to go to ER with unexplained pain so went through slow progression of xrays, MRI, tests, with PC and pain management and found no answers. Then last fall I began to use Repatha regularly every two weeks and a pattern emerged. By this August and my last two doses I had no doubt, the pain began within hours of injection. I stopped and saw my cardiologist last week. He of course has never heard of this and is puzzled but did listen and agree to stopping it for 6 months to see if pain recurs. I went on a very difficult high altitude hike yesterday and then dug rocks for hours and today I feel fine. Yes. Finally. I'll just live with the LDL as best I can and pray I survive the inevitable HA and make it to the cath lab in time again, but I refuse to waste any more precious years in crippling pain or weakness from bad drug reactions. If it's happening to you, you are not alone. Stay strong.
I started taking Repatha in late October 2020. Within 3 days had severe back/neck pain and headache plus nasal drainage. Took Repatha for 2 months before stopping. My back and neck pain are worse than ever now 4 and 1/2 months later. I was hoping it would stop but it hasn't. The headache has gone away and the nasal drainage is not as bad. Why does it cause the back/neck pain? I need relief.
I never knew that joint pain was one of the side effects. I took two months of physical therapy for my Neck thinking it was due to OA in three discs. After talking with my Pharmacist she informed me that it may cause joint pain. I still am taking it but I will contact my Cardiologist that I am discontinuing Repatha after taking over 1 year (every two weeks). Just feel like dodo. I bet it's causing my GI tract to slow down as well. I am a Vegan and know I get plenty of fiber. Anyhow it might explain a host of other symptoms as well. Too bad statins hurt a lot and now this isn't going to work out either.
I started Repatha about a month ago. I had an immediate 10% increase in blood pressure, which is carefully monitored because of aortic root dilation. I had 3 days of "neurocognitive defecit", viz., severe depression and disorientation. That did go away, and all seemed well until I have started to get severe lower back pain and leg weakness. When I saw these other statements about Repatha, I was stunned by the precisely similar effects experienced. I really want something safe. SLipitor was bad enough. Now this.
I was on Repatha for nearly a year and was excited to see my numbers plummet. That was until the back pain and leg weakness made me feel like I was a very old man.
My cardiologist pulled me off Repatha and the leg numbness subsided. He replaced it with Livalo 4mg and diet. I may need to add a low dosage of a statin but that pain pales in comparison to what repatha did to me.
I hope this helps and wish you the best.
I have been using Repatha for 3 years now, statin drugs have a less than desirable effect on me, so my doctor pulled me off the statin drugs and initially prescribed Praluent but my insurance stopped paying for it so he put me on Repatha 140 every 2 weeks.
The issue with the statin drugs was the muscle/joint pain became unmanageable so I had to quit taking them.
Over the past year, I have noticed that the muscle/joint pain that I was experiencing with the statin drugs has reappeared. I am currently taking oxycodone 10 mg twice a day and it's not having much of an effect. An additional issue is swelling in my legs and feet below the knees, I am on my own here, the only thing that I can do is start backing off the drugs that I take one at a time and see if the swelling goes down.
My PCP prescribed a diuritic (furosemide) which is great the only issue is when nature calls I have to struggle to get out of my chair quickly and get to the bathroom, not an easy trick with the level of muscle weakness and stumbling around.
I have major muscle weakness in my legs, I am to the point where I can barely walk, I have fallen many times in the past year and have managed to tear the rotator cuffs in my both of my shoulders. The last time i fell I had to call the EMT's because I could not get up on my own.
I am not quite sure what to do about this problem, my PCP says I have to use Repatha or a statin because of underlying heart conditions, but the level of discomfort is fast becoming unmanageable. I still work and spend a good part of my day focused on my discomfort.
As much as dislike saying this I believe that Rapatha may well be a major contributor to the muscle/joint pain an weakness.
My PCP has not been very helpful in trying to get to the root cause of this issue, so i am have decided to stop using Repatha for the next 2 months and see if the level of discomfort changes significantly.
If any one has some constructive ideas I would really like hearing them.
JD
On Repatha for more than a year, over that year my health has deteriated dramatically, again, after recovering from severe muscle pain brought on by statin use. Excruciating back urinary tract and abdominal wall pain. MRi ultra sound CT scans and endoscope showed no damage or abnormalities. Finally started not taking all the prescribed anti inflammatory drugs in a staged way. The last drug stoped using Repatha, as it is long acting I had to wait 6 weeks before noticeable results, 8 weeks now and all pain is reduced, no waking up with back pain (agony) painfully blader and urination. All those scanned and very uncomfortable procedures, cameras were you don't want them and a large list of symptom treating drugs, all because none of my health professionals would conceive a wonder drug is too good to be true. Hope this helps others
Pretty much my experience: Repatha side effects are simply not being taken seriously. I mentioned it to my doctor, he acted like I was a medieval peasant that thought the world was flat. I'm seeking a second opinion from the integrative medicine clinic here. Costly - insurance doesn't cover it, but so far, the only thing that is clear is that Repatha seems to lower all LDL subtypes, including those needed for nerves and muscles to function.
Right there with you.
So I spoke to my PCP regarding the issues I have since starting Repatha, informed him I had stopped for approximately 7 weeks . Restarted and had horrible pain reoccur. He said okay to stop till I had my cardiologist visit. I feel like I am in a state where I will never be comfortable the tension in my neck and shoulders is excruciating. Last dose caused severe pain in my left leg. Very difficult to stand up straight. As I needed the next dose the pain has lessened so no more for me.
On Repatha now for 22 months. Two months ago, started feeling fatigue, pain in my right hip and getting worse. Knees are aching now. Walking seems to be getting difficult. I am usually active and try to push through. I play doubles tennis 3-4 times a week. Went to the Chiropractor yesterday, it helped, but pain was back after two sets today. I didn't like taking statins because they gave me muscle pain. Repatha worked great at reducing cholesterol, and dose every two weeks! My weight dropped 10 pounds, lost food cravings. However now 22 months in and bad hip pain. Made an appointment to see my Dr next week. Don't like the hip and knee pain, I hope it goes away, otherwise I'll have to stop the Repatha, too bad cause nothing works as good.
I've been on Repatha for about 4 month and have not experienced any side effects
Back pain and flu like symptoms (muscle aches)are the most common side effects of this medication. Muscle pain, spasm and bone pain are infrequent, but can occur. How long have you been taking Repatha? Sometimes the side effects will subside within 4-6 weeks - if you don't feel comfortable continuing the medication to see if it will improve, you may want to contact your physician who prescribed it. Best of luck! ✌
Thank you for responding. I believe that it has been about 6 weeks. I may have noted a bit less discomfort this week. Are lack of coordination and weakness symptoms?
Thank you for your response. I have been on the shots for a little over 6 weeks. I have also had blood pressure that frightened me, 239/116. I also had several nights of nausea and diarrhea, but I am prone to that anyway. It had been better for quite a while though. I have also noted an increase in loss of balance and and weakness.
I would definitely consider contacting your physician. Weakness and lack of coordination are side effects as well. I experienced these same symptoms. Your blood pressure is dangerously high - I would seek the advice of your physician before your symptoms have a detrimental effect on you. I wish you the best and hope you find relief as soon as possible.
I'm glad you stopped taking it. It would have only gotten worse. I took it for 4 months and was taken off immediately when I had bursa in both legs, shin splints, and debilitating back pain. My legs throbbed and had pain like electric shocks and would throb at night. There were limps all over in my legs. I've been off since mid October and am doing a little better. Make sure your doctor does a CBC. My CBC was a mess. Everything was out of whack! I am also having a hard time remembering names of places and people that I've known for years. Feel blessed and I'm glad you're better.
I have been on Repatha for about 10 months. I have been experiencing leg weariness and severe pain in my sides. Hand pain and overall fatigue. My cardiologist told me to stop the injections. I’m hoping these side effects go away in a time. I feel as if I am a guinea pig for the drug company.
Related topics
pain, back pain, high cholesterol - familial heterozygous, muscle, repatha
Further information
- Repatha uses and safety info
- Repatha prescribing info & package insert (for Health Professionals)
- Side effects of Repatha (detailed)
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