Started Repatha - Side Effects

Posted by HomeAgainLA @llynch17056, Mar 21 5:42pm

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.

Repatha with Zetia got my LDL down to 20! I feel a little weird the day after I inject but that’s about it After my eighth injection

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Hi,
I also had these same issues and problems with the statins. It seems like there are more and more people suffering with these less than desirable side effects.
I started Repatha last year. It was incredible. No pain! My numbers were under control, and I felt a lot better about taking control of my health with a new medication that didn’t make me feel so bad!
Unfortunately, I am now experiencing some side effects from it. The percentage of people that have the GI upset is low, but I am one of them.
Another draw back of Repatha is the expense.
I am now looking for other ways to maintain my healthy HDL and LDL.
Good luck on your journey!

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@akc768

Hi,
I also had these same issues and problems with the statins. It seems like there are more and more people suffering with these less than desirable side effects.
I started Repatha last year. It was incredible. No pain! My numbers were under control, and I felt a lot better about taking control of my health with a new medication that didn’t make me feel so bad!
Unfortunately, I am now experiencing some side effects from it. The percentage of people that have the GI upset is low, but I am one of them.
Another draw back of Repatha is the expense.
I am now looking for other ways to maintain my healthy HDL and LDL.
Good luck on your journey!

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I tried it one more time. I did it for more than 3 months and then the side effects hit like a bomb. Severe joint and muscle pain and particularly in my low back with such intensity as well as my wrists and ankles and fatigue. My doctor finally said “what good is a low number if you can’t get out of bed?” Like the statins, I would go from active and vibrant to an invalid. I quit.

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I stopped having side effects on Repatha in 3 months. I had the achy and painful joints side effect as well as the flu like symptoms. After a NSTEMI, I was willing to continue at any cost. I have been on it for 4 years now, and now I only have a pain in the injection sight for a few hours. My LDL is not where the docs want it, so I am on Nexletol as well (another super expensive one). I did not have a single side effect from Nexletol.

Even when they have increased my beta blockers, it takes at least a month for my body to adjust. It is a new life for sure…and most days I am grateful for modern medicine. Cyber hugs!

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@agb

I'm approaching 6 months on Repatha with no side effects.

I saw something about the trials but have not seen enough on it to have an opinion.

Here's another way to look at this: we're all test subjects right now and it will take many years to know the long term effects from these new drugs. Around 20+ years ago, I was in the original niacin trial. Niacin raises HDL and lowers LDL; has to be good, right? We took 3000 mg daily of Niaspan, and after the trial, I took this for years. Just a few years ago, my doctor abruptly stopped me from taking it as it's now known that the long term effects are an increase in cardiovascular events, even though the HDL and LDL numbers looked better. Something else was going on.

Repatha has lowered my LDL to 27 (from 109) and my Lipoprotein B from 125 to 40, so short term, looks good. I'm hoping my taking this helps my kids, as they both have the inherited high cholesterol gene, and medicine will learn more as we go forward.

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I agree about being test subjects. I’m just going for quality, not quantity of life. Many people can take these drugs without a problem, but I can’t. I’m bearing down on organic fresh diet, exercise (8,000-12,000 steps a day and yoga), sleep, and keeping my weight at a normal level. I also do sleep meditations. Trying to stay away from drugs as much as possible. Time will tell.

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Wry effective results with Repatha Current ldl is 19. Immediate results. However I am suspicious of general pain especially in my legs and hips. All I could find about this side effect is very little or no experience with pain. Anybody have any insights ?

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I had extreme back and kidney pain. My muscles and joints hurt and I was losing muscle mass. I had stopped walking and yoga was becoming difficult. I was fatigued. I had no quality of life. I quit it. It has been a slow return to normal and I’m not there yet. If my life is cut shorter (I’m not convinced it will be), at least I will have a quality of life which i did not have with statins or Repatha. I will not take any more medicine for cholesterol. I am using diet and exercise and that’s it.

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I have been on Repatha for 4 years. I had flu like symptoms and achy joints for the first 3 months, but it went away. At that time, I would do anything to stay alive…had a NSTEMI at 57…I was a bit shocked after doing everything the docs wanted except for statins (side effects).

I found out I had high Lp(a) - so Repatha is a godsend. I have been on the HORIZON clinical trial for a Lp(a) medication for nearly 3 years - reduces Lp(a) by 80%. Diet, exercise, and stress relief were not enough for me… My LDL only fell to 70 on Repatha, and has reached an equilibrium at 90. My docs say it is genetic but not FH.

Modern medicine really is amazing…but not made for everyone. Do the best for yourself and your situation.

Hugs,

Thea

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I am so happy for you. I tried different statins in different doses then Repatha over more than 10 YEARS. The side effects each time were debilitating. Each time I became practically bedridden. I quit. No more. It is what it is. I am now doing the slow climb back up from the abyss, AGAIN, after taking Repatha.

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I have very similar symptoms or side effects especially muscle loss in my legs and my back aches. Ive never had this before and I was blessed with strong knees and legs that seem to have suddenly gone away. I'm assuming its from the repatha. Im going to stop it and see if things clear up; Only way to knw Thank you so much for your answers! Best wishes for you too!
MS

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