Repatha side effects not believed

Posted by dinardoefd @dinardoefd, Jul 26, 2025

Repatha for 16 months and results are amazing however, leg pain, calf pain, started 3-4 ago.
Sore, stiffness in thighs and calves.
I won't mind so much but my doctor insists it is NOT related to medication.
I have statin intolerance, my blood work with geno test shows this.
Why does my doctor not believe me when I say I'm having leg pain suddenly after no other apparent reason?
Am I crazy, am I wrong? 60yr old male with CAD, CAC score over 2k but no blockage all less then 70%, no chest pain.
We believe my 1 of 4 parathyroids, remove in 2001, caused calcium to enter blood was having very high serum calcium levels before being removed. Still have 3 parathyroids with not ill effects but damage has been done.
Can these side effect appear months later as mine have or I can it be something else?

Interested in more discussions like this? Go to the Heart & Blood Health Support Group.

Profile picture for mdeblaey539 @mdeblaey539

You are not alone. I took Crestor for 4 months before I had muscle and leg pain and I was not believe either. They look at you like your crazy and insist it is something else but cant tell you what. All Statins do that to me so now I am on Repatha. i have started taking Repatha 3 months ago and developed some mild symptoms but hoped they would go away. I finally went to my doctor last Thursday with multiple symptoms that were never there before, excessive sleeping, hunger, sweating,dizziness, weakness and headaches. My doctor is doing multiple blood tests to make sure it is not anything else and a Halter Monitor. I have familial hypercholesterolemia.
YOU are NOT alone, tell them. With other meds if I am gonna have side effects, I have them within a day or two but with these drugs it has taken months.
All you can do is keep pushing until they fine something that works and doesnt cause diabetes. Good luck

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Hi @mdeblaey539, I notice you recently joined Connect and am so glad you commented. You found a great place of learning and encouragement, I’m sure you’ve already seen by a quick scroll through this discussion.

Great decision to see your doctor about possible side effects of taking Repatha. I struggled with the drug and what made it difficult for me was that it snuck up on me. I have since been able to switch to Leqvio injections every six months.

You mention it taking months for body sensations to start. Have you been able to recognize if they happen in a pattern maybe more intense following injections? Will you come back and comment when you learn more from your blood and heart testing?

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Profile picture for Janell, Volunteer Mentor @jlharsh

Hi @mdeblaey539, I notice you recently joined Connect and am so glad you commented. You found a great place of learning and encouragement, I’m sure you’ve already seen by a quick scroll through this discussion.

Great decision to see your doctor about possible side effects of taking Repatha. I struggled with the drug and what made it difficult for me was that it snuck up on me. I have since been able to switch to Leqvio injections every six months.

You mention it taking months for body sensations to start. Have you been able to recognize if they happen in a pattern maybe more intense following injections? Will you come back and comment when you learn more from your blood and heart testing?

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In reply to @mdeblaey539 "@jlharsh" + (show)

@mdeblaey539
Actually, once the symptoms came, they stayed. I was due to take a dose on Sunday but my doctor recommended I dont take it for a month. The intense itchiness has pretty much gone as of today. I am pleased to hear that you are on another medication and there actually are other medications. I thought this one was my last hope. Unfortunately, my doctor is on vacation but I have forwarded all the info to my cardiologist hoping he can shed some light on all this. I will certainly come back and report the results. I am 68 years old and never knew there was such a thing as familial hypercholesterolemia until I saw a endocrinologist 6 months ago. After my both carotid arteries were almost 100% blocked in 2019 and 2020 and I had Stent put in my heart in 2021 you think one if the many doctors I had would have mentioned it. Both my parents had 4 heart attacks and by pass surgery, but no mention of this apparently quite common genetic condition. My daughter and son are both in the process of having genetic testing done to see if they have this condition. My doctors are very good and my cardiologist is at Toronto General Hospital which was just voted the 2nd best hospital in the world. Did they just think I knew about it? I just dont understand . Anyways, I will post again when I know anything.

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Should persons with RA receive Rapatha injections?

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mrsj1, probably. Persons with RA usually have a higher (up to 2x higher) cardiovascular risk. RA medications reduce the risk by controlling inflammation. PCSK9 medications reduce the risk of atherosclerosis.
There are no "known" negative interactions between PCSK9 inhibitors, like Repatha, and other medications.
Repatha does have some side effects of its own. It's best to look at the package insert section on side effects.
You might also consider Leqvio.

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Profile picture for mrsj1 @mrsj1

Should persons with RA receive Rapatha injections?

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Hi @mrsj1, and welcome to Mayo Clinic Connect. What a good question! I assume you have rheumatoid arthritis (RA) and are considering Repatha.

I want to provide a link to what Mayo Clinic says about Repatha. I am not sure what information perks your ears since I am not a medical professional, but I became concerned for you noticing inflammation and joint pain along listed side effects.

Mayo Clinic Repatha Overview
-Evolocumab (subcutaneous route)
https://www.mayoclinic.org/drugs-supplements/evolocumab-subcutaneous-route/description/drg-20152627
I notice @gently has a good recommends to explore other drugs, maybe Leqvio. @rhondaj has mentioned Repatha side effects and RA. She may thoughts to help you. You may also want to have a conversation with your doctor helping to manage your RA as well as your pharmacist.

What is your history with taking drugs to treat your cholesterol, and do you have other health issues (along with the RA)?

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Profile picture for mrsj1 @mrsj1

Should persons with RA receive Rapatha injections?

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@mrsj1 I have RA and Coronary artery disease. To keep my cholesterol, especially LDL in check, I use Repatha because my body does not tolerate statins.
My primary provider, pulmonologists and cardiologist are all aware of the medications I am using. I had a drug evaluation by a doctor of pharmacy this fall, and he said the combination is as safe as any and should not interact.

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I'm six months in now on 140mg repatha which i take every 3 weeks due to my weight being only 95 lb and having side effects from every other med i've tried. I've hit a point where i woke up at 0300 w a horrible headache that under medication is still there after a week. calf pain muscle spasms dizziness abdominal and lower back pain and a restart of some tendinitis. so much for this being the gold standard. my lipid numbers are great but Im a mess!

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Profile picture for rnbabs1 @rnbabs1

I'm six months in now on 140mg repatha which i take every 3 weeks due to my weight being only 95 lb and having side effects from every other med i've tried. I've hit a point where i woke up at 0300 w a horrible headache that under medication is still there after a week. calf pain muscle spasms dizziness abdominal and lower back pain and a restart of some tendinitis. so much for this being the gold standard. my lipid numbers are great but Im a mess!

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Oh no, @rnbabs1! Welcome to Mayo Clinic Connect! I am glad to see you found a group to share information and encouragement. It sounds like you have been struggling for quite a while trying to keep your cholesterol under control.

Have you had a chance to visit with your doctor about side effects you are having?

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Profile picture for Janell, Volunteer Mentor @jlharsh

Oh no, @rnbabs1! Welcome to Mayo Clinic Connect! I am glad to see you found a group to share information and encouragement. It sounds like you have been struggling for quite a while trying to keep your cholesterol under control.

Have you had a chance to visit with your doctor about side effects you are having?

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@jlharsh yes i've tried all the statins (joint pain) nexletol (hip tendonitis) four months to recover. primary has ordered an mri of head just in case and we've stopped the med but im told 4-6 weeks for symptoms to resolve possibly longer. cardio doc said we'll try leqvia when im feeling g better

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