Repatha side effects not believed

Posted by dinardoefd @dinardoefd, Jul 26 10:29am

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.

Did you review repatha test results for leg pain side effects?

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Perhaps it's not that he disbelieves you, but rather that he feels he doesn't have enough time to thoroughly discuss your concerns.

Yes, Repatha side effects can emerge months after you start the medication. Common side effects of Repatha include body aches, pain, and muscle aches.

As for whether it could be something else entirely, it sounds like your doctor is unwilling to address it directly. You might try bringing up the common side effects listed for Repatha, like body pain and muscle aches, and point out that these are known side effects of Repatha. See what his response is then.

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Profile picture for mayoconnectuser1 @mayoconnectuser1

Did you review repatha test results for leg pain side effects?

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Yes, was first put on oral pills but could not tolerate those so went to Repatha. At first no side effects but now my legs kill me.

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Profile picture for kisu @kisu

Perhaps it's not that he disbelieves you, but rather that he feels he doesn't have enough time to thoroughly discuss your concerns.

Yes, Repatha side effects can emerge months after you start the medication. Common side effects of Repatha include body aches, pain, and muscle aches.

As for whether it could be something else entirely, it sounds like your doctor is unwilling to address it directly. You might try bringing up the common side effects listed for Repatha, like body pain and muscle aches, and point out that these are known side effects of Repatha. See what his response is then.

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He is my cardiologist and shakes his head when I mention side effects, he says there are no such reports of these side effects.
Perhaps my primary doctor could help?
I guess if it's going to save my life I need to just take it live with side effects.
Getting old sux!

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dnardoefd, your doctor doesn't know https://pmc.ncbi.nlm.nih.gov/articles/PMC10201936/#fn-group1. Late onset and previous statin intolerance are thought to be hallmarks by these authors.
Our doctors have too many patients, too many diseases and on top of that too many medications. Despite really good intentions, they don't believe the < 5%.
I'm trying to decide about Repatha. I think that side effects are more than inconvenient. They represent, in this case, a mechanism that is not understood. I wonder what else the drug is doing to you and your small group of cohorts (probably me, too) that remains unrecognized.

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Profile picture for gently @gently

dnardoefd, your doctor doesn't know https://pmc.ncbi.nlm.nih.gov/articles/PMC10201936/#fn-group1. Late onset and previous statin intolerance are thought to be hallmarks by these authors.
Our doctors have too many patients, too many diseases and on top of that too many medications. Despite really good intentions, they don't believe the < 5%.
I'm trying to decide about Repatha. I think that side effects are more than inconvenient. They represent, in this case, a mechanism that is not understood. I wonder what else the drug is doing to you and your small group of cohorts (probably me, too) that remains unrecognized.

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Thanks for reminding me about this study. After serious issues with statins, I have been using Repatha successfully for a little more than a year with a few tolerable side effects. (I get a nagging headache for a day or two, and sometime between 4 and 48 hours after injection an overwhelming bout of fatigue, relieved only by a 3-4 hour nap.) But my numbers are so good and my risk so high that I will continue for now. If eventually Repatha fails me, my cardio team say they have 2 more drugs in their arsenal.
Have you tried Repatha and had issues with it?
Overall, the first cardiologist onthe team said 15-20% of their patients cannot use it. I am fortunate to have found a great practice that works as a team, and although the med guy could use more personality or bedside manner, he knows his stuff when it comes to statin intolerance! The staff loves him because he believes the patient and keeps trying. His partner who treats my CAD defers to him on medication issues.

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Been on Repatha for almost 2 years. No negative side effects, only low Apo b and LDL.

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Profile picture for gently @gently

dnardoefd, your doctor doesn't know https://pmc.ncbi.nlm.nih.gov/articles/PMC10201936/#fn-group1. Late onset and previous statin intolerance are thought to be hallmarks by these authors.
Our doctors have too many patients, too many diseases and on top of that too many medications. Despite really good intentions, they don't believe the < 5%.
I'm trying to decide about Repatha. I think that side effects are more than inconvenient. They represent, in this case, a mechanism that is not understood. I wonder what else the drug is doing to you and your small group of cohorts (probably me, too) that remains unrecognized.

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If I send that report to my doctor I believe he will fire me has his patient.

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dinardoefd, If you send him my post, he'll kill us both. Understanding that they can't be omniscient. we have to do the research that you are doing here on Connect. We only have one patient, usually only one or two diseases, maybe 1-4 medication. We should know more about our diseases and our medications than our physicians. Even with one disease it can be impossible to keep up with the research.

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Profile picture for Sue, Volunteer Mentor @sueinmn

Thanks for reminding me about this study. After serious issues with statins, I have been using Repatha successfully for a little more than a year with a few tolerable side effects. (I get a nagging headache for a day or two, and sometime between 4 and 48 hours after injection an overwhelming bout of fatigue, relieved only by a 3-4 hour nap.) But my numbers are so good and my risk so high that I will continue for now. If eventually Repatha fails me, my cardio team say they have 2 more drugs in their arsenal.
Have you tried Repatha and had issues with it?
Overall, the first cardiologist onthe team said 15-20% of their patients cannot use it. I am fortunate to have found a great practice that works as a team, and although the med guy could use more personality or bedside manner, he knows his stuff when it comes to statin intolerance! The staff loves him because he believes the patient and keeps trying. His partner who treats my CAD defers to him on medication issues.

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Sue, sounds like you are in a good system. Mayo?
I haven't taken Repatha, and appreciate your review. I hesitate for fear of muscle loss and relax in the pretense of waiting for Crispr. https://ir.crisprtx.com/news-releases/news-release-details/crispr-therapeutics-reports-positive-additional-phase-1-data
I have cardiac genetic testing at Stanford in a few months. But I aced the cardiac treadmill stress test impressing only the techs.
I don't care about bedside manner and usually like the md with the bad reviews. I remind myself that these doctors are studying (thank goodness) while the rest of us are developing social skills.
Because the mechanisms of our side effects are often unarticulated or unknown, I'm not sure that tolerating them is healthful. But I do know that I'm a wimp.

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