Repatha reaction?

Posted by rhondafunnygirl @rhondafunnygirl, Dec 27, 2024

I’ve been on Repatha for two doses. Out of nowhere started to feel a flutter in bottom of throat or neck. And then a dry cough. Thought it was acid reflux but my gastroenterologist said no and suggested I take magnesium twice a day as my rhythm is slightly off. Has anyone had this reaction to Repatha? I don’t know what to do next.

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I have been on it for 4 months and have noticed some issues with each injection. I also have other underlying issues like Hashimoto's which when it is off causes palps which in turn causes my BP to go up. Muscle issues. I am continuing but if I continue to have palps, I will ask to do just once a month or stop to see if symptoms stop. The first 2 injections I had bad nausea and threw up once. That stopped but my upper back now seems to always feel like I pulled a muscle. I see my doctor next month. It definitely helped my lipids but I am not sure what else it is doing. It is a monoclonal antibody

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Profile picture for outnumbered @outnumbered

STOP TAKING REPATHA! It’s a horrible drug with many awful side effects and many people have ended up with lifelong problems . I took one injection 2 weeks ago and I’ve had the worst diarrhea ever since. It’s like there’s a faucet in my rectum that’s been turned on full force. I’m wearing depends now and I never had to do that but I often can’t make it to a bathroom on time! I can’t even do short trips for groceries without taking several Imodium AD’s. I’ve also developed a constant runny nose and my finger joints are swollen and painful. Read the patient reviews on websites other than the company’s site. Some of the people on Repatha develop symptoms immediately after 1st injection but many don’t develop the serious life changing symptoms until months or even a couple years !

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@outnumbered
Me too! I was on my second dose of this and it hit me hard. Doctor said it would pass to keep taking it because my calcium score was 541 and I had a stroke in 2019. Well six doses in it got worse! On top of that it lowered my cholesterol to a 5! GP ran some test and found it gave me fat malabsorption disorder causing me not to digest essential vitamins and minerals. Brought my test to cardiologist NP and she told me that she didn’t know anything about my fat malabsorption disorder and that I should keep taking the Repatha. I smiled and walked out saying I sure will not lol. I’m not taking that crap anymore and I’m getting another cardiologist!

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Profile picture for gloaming @gloaming

I'm sorry you have this happening. I would caution, however, against falling for the post hoc fallacy. Just because something happened after you tried something new doesn't mean the unfortunate event or change in circumstances wasn't coming your way all along, and just happened to take place a few days or weeks after the novel experience. Cardiac arrhythmia is not included in the list of either mild or serious side effects here:
(N.B.- I do not take Repatha, and I'm not in any way affiliated with, or invest in, the corporation that has brought it to market, or with a seller/distributor of Repatha.)
https://www.healthline.com/health/drugs/repatha

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@gloaming
I also had arrythmia after my second and third doses of Repatha. It would last for a few days after the injection and then subside until the next injection. I quit taking it. The arrythmia resolved.

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I was started on Repatha one month postop for a quad bypass, along with my high dose statins. I had 4 arteries 90% blocked including the LAD at 95%. My calcium score was 2007 by CCTA. I have been on high dose statins since my late 20s, they added ezetimibe about 4 years ago. I have FH, both parents died at 45 and a brother at 52, two from atherosclerosis and my dad massive MI. Repatha has knocked my LDL down to 31 after 2 months on and the only bloodwork that has been done since starting almost six months ago. Now for side effects; my back pain is increasing to the point I cannot walk long distances or exercise without back and hip pain. My nose runs constantly. I sleep well but have weird dreams that make you unsure of exactly where you are upon waking (clears pretty fast). My ring and little finger on the right randomly contract at will, along with my 4th and 5th toes on the right. I get weird charlie horses at the injection sites. I have not had diarrhea per se, but my bowel movements are definitely different. My biggest gripe is that blood has been drawn once since starting the Repatha and I believe once every six months is too long in between, especially with side effects. My cardio has passed me off to his PA, so I am actively looking again.

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Profile picture for kdarrow @kdarrow

I was started on Repatha one month postop for a quad bypass, along with my high dose statins. I had 4 arteries 90% blocked including the LAD at 95%. My calcium score was 2007 by CCTA. I have been on high dose statins since my late 20s, they added ezetimibe about 4 years ago. I have FH, both parents died at 45 and a brother at 52, two from atherosclerosis and my dad massive MI. Repatha has knocked my LDL down to 31 after 2 months on and the only bloodwork that has been done since starting almost six months ago. Now for side effects; my back pain is increasing to the point I cannot walk long distances or exercise without back and hip pain. My nose runs constantly. I sleep well but have weird dreams that make you unsure of exactly where you are upon waking (clears pretty fast). My ring and little finger on the right randomly contract at will, along with my 4th and 5th toes on the right. I get weird charlie horses at the injection sites. I have not had diarrhea per se, but my bowel movements are definitely different. My biggest gripe is that blood has been drawn once since starting the Repatha and I believe once every six months is too long in between, especially with side effects. My cardio has passed me off to his PA, so I am actively looking again.

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@kdarrow After 2 years on Repatha, my blood draws are just twice each year.
The side effects you report could be from other post-bypass meds, or the combo of Repatha and other meds.
In your shoes, I would look for a Doctor of Pharmacy to evaluate all meds used, including over-the-counter and supplements, to uncover the cause of side effects. You can contact your pharmacy to start, if no help, call your insurance provider.

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Profile picture for Sue, Volunteer Mentor @sueinmn

@kdarrow After 2 years on Repatha, my blood draws are just twice each year.
The side effects you report could be from other post-bypass meds, or the combo of Repatha and other meds.
In your shoes, I would look for a Doctor of Pharmacy to evaluate all meds used, including over-the-counter and supplements, to uncover the cause of side effects. You can contact your pharmacy to start, if no help, call your insurance provider.

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@sueinmn The only prescription change since the bypass was the addition of amlodipine, nothing else changed. I am a very active person and was before the bypass, I don't have that luxury now. The back pain, the fatigue, the weird feelings in the morning (which is now major imbalance for a few minutes upon waking), all have come on since the Repatha was started one month after surgery. I have now been on it 6 months. Everything was ok in the beginning and now weird things have been happening. I dropped drastically on my first blood draw in Jan with my lipids with my LDL going from 68 to 31. At that point, I asked my cardio, "how low is too low?" "Should we lower my high dose statins?" He didn't have an answer, other than not yet. I am going to see a new cardio who is a clinical researcher on June 1st but I am not sure I will continue the Repatha until then. One way to figure out the cause and effect is to stop the Repatha and see if things improve -- if so I have my answer. If not then I have a frank conversation with the new cardio.

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Profile picture for kdarrow @kdarrow

@sueinmn The only prescription change since the bypass was the addition of amlodipine, nothing else changed. I am a very active person and was before the bypass, I don't have that luxury now. The back pain, the fatigue, the weird feelings in the morning (which is now major imbalance for a few minutes upon waking), all have come on since the Repatha was started one month after surgery. I have now been on it 6 months. Everything was ok in the beginning and now weird things have been happening. I dropped drastically on my first blood draw in Jan with my lipids with my LDL going from 68 to 31. At that point, I asked my cardio, "how low is too low?" "Should we lower my high dose statins?" He didn't have an answer, other than not yet. I am going to see a new cardio who is a clinical researcher on June 1st but I am not sure I will continue the Repatha until then. One way to figure out the cause and effect is to stop the Repatha and see if things improve -- if so I have my answer. If not then I have a frank conversation with the new cardio.

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@kdarrow I kept a chart of what my symptoms were each day once I suspected Repatha. The longer I took it the worse it got. When I stopped after taking it for over a year it took a month or 2 to gradually return to normal. The longer you take it the longer it will take for your body to go back to how it was before. Took me about 2 months to get it out of my system. Good luck to you.

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Profile picture for funnylady @funnylady

@kdarrow I kept a chart of what my symptoms were each day once I suspected Repatha. The longer I took it the worse it got. When I stopped after taking it for over a year it took a month or 2 to gradually return to normal. The longer you take it the longer it will take for your body to go back to how it was before. Took me about 2 months to get it out of my system. Good luck to you.

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@funnylady thank you, Yes I am writing them down and meeting with my PCP next week. I have a shot due on Tuesday, but I am not taking until after I speak with her. This is one drug you can stop cold turkey. I am also going to ask for a blood draw to see where the numbers are now. I have now had 3 bouts of waking up with sleep paralysis in the past week, which I'd never even heard of before and I don't know if it's related, but I do know the constant fatigue, back pain, weird muscle aches, cramping, and twitching are.

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