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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Profile picture for funnylady @funnylady

I've just stopped taking Repatha without my doctor's approval after taking it for a year . She thinks I'm jumping to conclusions but I've been down this road b4. When I was given statins and developed incredibly severe leg pains I was told it was unrelated until the pain was so bad I couldn't work anymore. I stopped the meds & the pain went away. So then I went through all the statins & still experienced either extreme muscle or joint pain. I have familial hyperglycemia which killed my dad at 61. I thought Repatha would be great. The result was much lower bad lipids but my triglycerides and blood sugar went up. As time went on the joint pain which started as a twinge became very severe. I can't stand more than a minute now. I feel like I'm 110 yrs old trying to get up out of a chair. The intestinal issues started small but with time got worse and worse. So I was prescribed more meds and PT to try to counteract all these side effects. Now that I've stopped Repatha the side effects are slowly improving. I'm glad this drug works for some people but it's really terrible to suffer all these side effects every day. I know I am running the risk of a cardiac issue but then I'm trading that for less pain, stiffness and terrible intestinal issues every single day. If you have symptoms, don't let your doctor tell you you're imagining it.

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@funnylady Agree. I am having gastric issues with Repatha and do not want high blood sugar so they can give me another medication. I will stop before taking more "band aids" for symptoms that don't have a real cure. I had severe myalgia with statins so cannot take those. I still have muscle and now tendon pain but even before Repatha. I am waiting to see if it makes them worse. Gluteal Tendonopathy is what I am working on for past 10 years and now I could be making it worse! I am taking my second injection today, so will see how the next 2 weeks go. If the same or worse, I will be stopping.

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Profile picture for loyd1957 @loyd1957

I have only had one dose and most of the time I had nausea and one time vomiting. No diarrhea but I have chronic constipation, so that might be helpful for me. I already had diagnosed heart PVCs and flutters since diagnosed with Hashimoto's thyroiditis. I told nurse that if the nausea and not wanting to eat continues, I won't be continuing. I can't take statins which would help tremendously because of severe myalgia. Diet and exercise don't help with lipids and my advanced lipids panel was really bad. Plus, I had high CR-P inflammation marker. I am more worried about the blood sugar and maybe that is why I am nauseous and feeling light sometimes. I wonder if the symptoms will go away or ease up.

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@loyd1957
I too have chronic constipation so I actually was looking forward to my second dose of Repatha. My diarrhea from the first dose only lasted 2 days. This time around-zilch. Sounds like you have a lot going on, I hope you get over the nausea and can continue. Best of luck

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Profile picture for cawiegand @cawiegand

I took my first dose 6 days ago. I threw away the second dose as the side effects so far are horrible. I have genetic familial hypercholesterolemia for 40 years now. I am unable to take statins due to side effects. I have one stent and last screening shows minimal blockage. Rapatha is not the way for me. For the last 5 days I can barely walk due to the joint pains in my legs, ankles, and feet. My back hurts like no other and I have had two back surgeries. The injection has exasperated my asthma. I am extremely light headed and lastly this has increased my blood sugar levels like no other. I will be calling my PCP as my cardiologist is not the easiest person to get a hold of and I refuse to pay the money for an ER visit. I am very happy to have found this blog, makes me not second guess my symptons and know that I am not alone. Can anyone tell me when the symptons will calm down and go away?

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@cawiegand I think the symptoms calming down will be individual. It's been 6 weeks for me and I am feeling the difference. From what I have read, it builds up in your body slowly, which is why I was missing the cause. Some people say they have relief as soon as they stop, but for me, I felt the joint relief start after 3 weeks or so. I am moving SO much better & can get up and down out of a chair or off the floor much, much easier. The gastric issues are slowly getting better. It's going to take months to get it all out of my system. I hope your relief is quick.

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Profile picture for loyd1957 @loyd1957

@funnylady Agree. I am having gastric issues with Repatha and do not want high blood sugar so they can give me another medication. I will stop before taking more "band aids" for symptoms that don't have a real cure. I had severe myalgia with statins so cannot take those. I still have muscle and now tendon pain but even before Repatha. I am waiting to see if it makes them worse. Gluteal Tendonopathy is what I am working on for past 10 years and now I could be making it worse! I am taking my second injection today, so will see how the next 2 weeks go. If the same or worse, I will be stopping.

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@loyd1957 I agree Lloyd, one drug causes a problem so they give you 2 more to "fix" it, which causes another problem, so more drugs. Good luck to you.

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Profile picture for funnylady @funnylady

@cawiegand I think the symptoms calming down will be individual. It's been 6 weeks for me and I am feeling the difference. From what I have read, it builds up in your body slowly, which is why I was missing the cause. Some people say they have relief as soon as they stop, but for me, I felt the joint relief start after 3 weeks or so. I am moving SO much better & can get up and down out of a chair or off the floor much, much easier. The gastric issues are slowly getting better. It's going to take months to get it all out of my system. I hope your relief is quick.

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@funnylady So, you continued on the medication and the symptoms subsided gradually over months? I was wondering if that would be the case. Repatha does make me not want to eat. My issue with that is I only want to eat things soft and bland and that isn't good for diet. I hope that changes.

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Profile picture for loyd1957 @loyd1957

@funnylady So, you continued on the medication and the symptoms subsided gradually over months? I was wondering if that would be the case. Repatha does make me not want to eat. My issue with that is I only want to eat things soft and bland and that isn't good for diet. I hope that changes.

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@loyd1957 Oh absolutely not! It took me over a year as my symptoms got worse and worse to figure out it was the Repatha. I will NEVER take it again. It will take about 3 months to get it all out of my system.

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2 days after my first dose, I had an insane sudden spike in my blood pressure from 150s/80s to 220/120 !!! requiring ER visit and overnight hospital stay. I was discharged the next day and all were left scratching their heads as to the cause. 2 days later, the exact same thing happened again. Long ER day with several CT scans, labs, etc. Discharged with no answers and more head scratching. Turned to reddit to find posts of BP issues. I am fully convinced it is a reaction to the Repatha. Nowhere in their patient literature are BP issues stated. After a bit of digging online you can find a few mentions of it. None of the healthcare professionals I was treated by knew that this was a possibility either. Now I've got 60-90 days for full clearance , half-life is 11-17 days. Fingers crossed this doesn't happen again. Worst and most costly med reaction I have ever experienced. This side effect needs to be front and center in patient literature. I also did not see it on Mayo site when I looked.

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