Started Repatha - Side Effects

Posted by HomeAgainLA @llynch17056, Mar 21, 2024

I had terrible side effects with statins (any statin, any dosage). For about 30 years my doctors have pushed statins and
I have resisted. Finally I agreed to Repatha. The first week I had zero side effects. With my second dose, 2 weeks in, i woke up and my joints and muscles hurt a LOT.
1. Does this side effect go away?
2. What do you know about the recent information that the Repatha trials underreporting deaths from cardiac events while taking Repatha.

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

@llynch17056

What recommendations does the Mayo Clinic Cardiology’s Statin Intolerance Clinic make. I cannot take statins, any kind at any dose, or Repatha. I put my body through hell trying and retrying these drugs. The recoveries were slow. I still have remarkable low back pain from Repatha over three months after stopping it. I am thinking there is permanent damage. I exercise, keep a normal weight, eat organic healthy food and don’t smoke or drink. Would the Mayo Clinic Cardiology’s Statin Intolerance Clinic have anything for me? I tried red yeast rice which gave me “statin like” side effects. I currently take Beta Sitosterol. I left my cardiologist when he told me “I have nothing for you if you cannot take statins or Repatha.” LDL 184, LPa 168, HDL 84

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I would get occasional lower back ache pain after my repatha injection. I don’t know if this would help you, but I would take a Doan’s back ache pill and it was gone in 20 minutes.

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Thank you. I am trying not to take drugs to alleviate the side effects of another drug. A slippery slope of drugs. I looked at Doan’s during that time and there were potential side effects that concerned me. My Repatha low back pain was pretty severe and remains bad although better since I’ve been off of the Repatha. I will be 78 next month and I am very careful what I put in my body. I use Yoga Balm with CBD on my low back at night and it seems to help and also with sleep. I have struggled with sleep since original COVID. Now, with the yoga balm I’m no longer taking anything for sleep or low back pain.

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I like how you think, @llynch17056. Everything seems to cause something else, and we are all so different in unexpected ways. I assume you find Yoga Balm with CBD safe since you are opting to take it currently. What have you learned about this add to your therapy?

My PCP told me to add ibuprofen a few years ago when I hit the worst of my health crisis. Now I read it is not necessarily good to add when you already take baby aspirin. Of course, the disclaimer “unless told by your doctor”. There is so, so much I do not understand. The caution I see and follow now is, “ Tell your care team if the pain lasts more than 10 days, if it gets worse, or if there is a new or different kind of pain. ”

Wonderful you can manage your back pain from injections with an NSAID like Doan’s, @missey. Has your pain been pretty consistent, shot to shot? Have you had a chance to discuss Doan’s with your doctor prescribing your Repatha?

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@jlharsh

I like how you think, @llynch17056. Everything seems to cause something else, and we are all so different in unexpected ways. I assume you find Yoga Balm with CBD safe since you are opting to take it currently. What have you learned about this add to your therapy?

My PCP told me to add ibuprofen a few years ago when I hit the worst of my health crisis. Now I read it is not necessarily good to add when you already take baby aspirin. Of course, the disclaimer “unless told by your doctor”. There is so, so much I do not understand. The caution I see and follow now is, “ Tell your care team if the pain lasts more than 10 days, if it gets worse, or if there is a new or different kind of pain. ”

Wonderful you can manage your back pain from injections with an NSAID like Doan’s, @missey. Has your pain been pretty consistent, shot to shot? Have you had a chance to discuss Doan’s with your doctor prescribing your Repatha?

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What!? I do not take Doan’s back ache pills by injection please correct your post to me as it is misformation. It is only occasionally that I use one tablet for lower back ache pain. And yes, the Doans OTC backache med is perfectly fine. It is composed primarily of magnesium.

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@missey

What!? I do not take Doan’s back ache pills by injection please correct your post to me as it is misformation. It is only occasionally that I use one tablet for lower back ache pain. And yes, the Doans OTC backache med is perfectly fine. It is composed primarily of magnesium.

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She was saying that it was good that a Doan’s pill would manage pain caused by Repatha injections. Not that Doan’s is injected.

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@missey

What!? I do not take Doan’s back ache pills by injection please correct your post to me as it is misformation. It is only occasionally that I use one tablet for lower back ache pain. And yes, the Doans OTC backache med is perfectly fine. It is composed primarily of magnesium.

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@missey
I was responding to your comment that you manage occasional lower back ache pain after repatha injections with Doan’s, from my perspective of feeling like Repatha side effects crept up on me. I am glad you are able to continue the injection.

I am overly sensitive to anything that goes into my body at this point, not sure if that is necessarily all positive or negative, probably some of both. Your comment prompted me to do more searching about Doans. It is a “Magnesium Salicylate Tablet”, right? Thank you, I very much appreciate it.
Here is some of what I what I found: https://my.clevelandclinic.org/health/drugs/18592-magnesium-salicylate-tablets

Now I have more questions than I started with, of course. Did I address your concern with what I said in my earlier comment?

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@jlharsh

Hi @repathaconcerns, and welcome to Mayo Clinic Connect. I am sorry you are having so many problems treating your cholesterol. Repatha did not work for me, either.

The half-life of the drug staying in your body is 14-17 days, so it is going to hang around a while. It will take about 3 months. One thing that has been a constant for me has been to stretch and stay active!

You mention having problems with statins, and now Repatha. Please be encouraged knowing there are other options. Mayo Clinic Cardiology’s Statin Intolerance Clinic may be a good resource for you and/or your cardiologist.

Your cardiologist may not know what to expect with Repatha. Did they tell you how long of a break they’d recommend?

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Thank you so much for your detailed and thoughtful reply. My primary care provider prescribed a muscle relaxer and that has helped some. Interestingly, some of the effects continue after the drug wears off. I don't know if that's indicative of something or not but I'll take it.
I'm rather frustrated with my cardiologist at the moment. She or her office hasn't followed up and it seems like they are taking a hands off approach because they think it's not the Repatha. When they learned what I tried already for the pain, my cardiologist didn't have any other suggestions. Meanwhile, my primary care provider is trying other options??? I also read that myalgia was the #1 reason people discontinued Repatha, at least in the clinical trial. To answer your question, the cardiologist just said to try discontinuing it. She didn't say for how long. It almost seems like she's throwing in the towel.
It is a relief to know there are other options. Although I grow up in MN, I'm now in CA so I don't have access to Mayo's Statin Intolerance Clinic. Is that a resource cardiologists can consult with on cases, or no? She's a preventative cardiologist who has been practicing for quite some time and she only continues to treat patients to manage their lipids so I'm confused how she doesn't have experience with this side effect. I don't seem to be the only one . . .

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