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.

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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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Same here. Been taking injections for 18 weeks and the painful muscles just started.

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After resisting statins for more than 25 years I was finally forced to start on it recently. One doc prescribed 20 mg rosuvastatin and another one prescribed 10 mg. I am taking 10 mg on alternate days ( my own compromise formula!). Even with this reduced dosage there are so many side effects including hurting sole & Achilles heel, joint pain, muscle pain etc.

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@euser

After resisting statins for more than 25 years I was finally forced to start on it recently. One doc prescribed 20 mg rosuvastatin and another one prescribed 10 mg. I am taking 10 mg on alternate days ( my own compromise formula!). Even with this reduced dosage there are so many side effects including hurting sole & Achilles heel, joint pain, muscle pain etc.

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My doctor tried all that, too. Different ones, lower dose, every other day. It was always the same. I got sicker and sicker. No quality of life at all. And, each time I quit I had a recovery period, as much as two months. I’m starting to wonder if I have ever recovered. Someone posted on here that she had a friend that couldn’t take statins or Repatha and she was referred to a cardiologist that specializes in treating those that can’t take the drugs. My cardiologist is not a candidate, his statement to me was “I have nothing for you if you can’t take these drugs.” I asked him about a referral and he was non-responsive. I have an appointment with my internist on Wednesday for the sole purpose of digging into this and help finding someone to treat me without statins or Repatha. We have to be our own researchers. Doctors aren’t cooperative.

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@euser

After resisting statins for more than 25 years I was finally forced to start on it recently. One doc prescribed 20 mg rosuvastatin and another one prescribed 10 mg. I am taking 10 mg on alternate days ( my own compromise formula!). Even with this reduced dosage there are so many side effects including hurting sole & Achilles heel, joint pain, muscle pain etc.

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And, it doesn’t help that many people take statins without a problem so the doctors tend to think you’re a problem if you say you can’t take them. Downright don’t believe you. They are so stuck on that as the only show in town. The reason trials show some percentage with severe side effects, even heart attacks and death, is because SOME people can’t take them. Otherwise, it would be zero people have any side effects and that’s not the case. We are part of that percentage that does have unsustainable side effects.

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@llynch17056

My doctor tried all that, too. Different ones, lower dose, every other day. It was always the same. I got sicker and sicker. No quality of life at all. And, each time I quit I had a recovery period, as much as two months. I’m starting to wonder if I have ever recovered. Someone posted on here that she had a friend that couldn’t take statins or Repatha and she was referred to a cardiologist that specializes in treating those that can’t take the drugs. My cardiologist is not a candidate, his statement to me was “I have nothing for you if you can’t take these drugs.” I asked him about a referral and he was non-responsive. I have an appointment with my internist on Wednesday for the sole purpose of digging into this and help finding someone to treat me without statins or Repatha. We have to be our own researchers. Doctors aren’t cooperative.

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Agree. We have to do our own research. Please share details if you find a way without the cursed statins. I will do so too. Good luck!

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@llynch and @euser I have been trying to lower my cholesterol for years, finally getting it done. Niacin, statins, bile acid sequestrants, ezetimibe, Repatha and Praluent, Bempodoic acid, inclisiran injections, and even every other week lipid apheresis (a blood treatment to physically remove cholesterol). There are a variety of options available today and the key is to find a doctor you can work with to figure out what you’re unique problem is. A standard lipid panel won’t tell you. There are other markers that dig into the weeds. Cholesterol accumulates for a variety of reasons; our bodies can make too much, not move it around where it needs to be, doesn’t remove it properly, etc. Each drug works differently so it really will help to know exactly what problem you are trying to solve.

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Have you done the tests to assure that you actually need to lower your cholesterol, ie you’re actually have cholesterol blockage? Some people have high numbers but it’s not a problem. LIPID tests don’t tell you that. Heart scans do and, I’ve been told, the LPa numbers mean more for indicating a need to lower your cholesterol. You mentioned that you seem to have found the answers. Please share.

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@llynch17056

Have you done the tests to assure that you actually need to lower your cholesterol, ie you’re actually have cholesterol blockage? Some people have high numbers but it’s not a problem. LIPID tests don’t tell you that. Heart scans do and, I’ve been told, the LPa numbers mean more for indicating a need to lower your cholesterol. You mentioned that you seem to have found the answers. Please share.

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If I understand you correctly I believe you are referring to calcium scans done to show how much hard plaque, or calcification is built up in arteries? I had a calcium scan done resulting in a significant number. From there I saw a cardiologist who did a heart cath. My understanding was I didn’t have any blockages significant enough to cause any symptoms. Is that what you mean?

The cardiologist explained to me that the soft plaque moving around was not good. His example was a study done with a group of cardiologists all given test results from patients who all had heart attacks within 6 months following their tests. They were supposed to try and determine where these heart attacks would happen based on the tests done prior to them. Results were interesting. It was actually not in the places that already had the most build up, or blockage. A good portion were actually in places with lesser amount of calcification.

I learned that calcification happens when that soft plaque sticks and hardens. The soft plaque is there because of all the bad stuff floating around in our blood. Yes, LP(a) is a measure of one lipid marker, and is totally genetic. ApoB and ApoA-1 are helpful. High triglycerides can cause problems, too.

We need to understand our unique risks. Do we need to control something, why, how much? The first step towards solving any problem is figuring out what the problem actually is. Then, what drug is best for that problem? Anything but that is speculation, and if we have side effects from drugs we are taking for something we are speculating about…….not worth it.

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@jlharsh

If I understand you correctly I believe you are referring to calcium scans done to show how much hard plaque, or calcification is built up in arteries? I had a calcium scan done resulting in a significant number. From there I saw a cardiologist who did a heart cath. My understanding was I didn’t have any blockages significant enough to cause any symptoms. Is that what you mean?

The cardiologist explained to me that the soft plaque moving around was not good. His example was a study done with a group of cardiologists all given test results from patients who all had heart attacks within 6 months following their tests. They were supposed to try and determine where these heart attacks would happen based on the tests done prior to them. Results were interesting. It was actually not in the places that already had the most build up, or blockage. A good portion were actually in places with lesser amount of calcification.

I learned that calcification happens when that soft plaque sticks and hardens. The soft plaque is there because of all the bad stuff floating around in our blood. Yes, LP(a) is a measure of one lipid marker, and is totally genetic. ApoB and ApoA-1 are helpful. High triglycerides can cause problems, too.

We need to understand our unique risks. Do we need to control something, why, how much? The first step towards solving any problem is figuring out what the problem actually is. Then, what drug is best for that problem? Anything but that is speculation, and if we have side effects from drugs we are taking for something we are speculating about…….not worth it.

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If you were a cardiologist I would hire you. This is exactly what I’m looking for in a doctor. Thank you.

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