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.

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@llynch17056

I also significantly reduced meats. I probably don’t eat red meat twice a year. I eat chicken (organic and humanely processed) and fresh caught sockeye salmon almost exclusively. I also eat organic and never eat processed food or fast food. My doctor said a completely vegetarian diet is known to reduce Chlorestrol, but, I also, am not sure I could do that.

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PS. I LIKE how I eat. If I were to eat fast food or processed food now it would actually make me sick. What does that tell you? I don’t consider my life style changes a punishment. I consider it a blessing to eat clean and exercise.

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@con123

When my cholesterol spiked to 296 in 2022, my doctor called in a statin without even discussing it with me or giving me a chance to try lifestyle changes. I found a cardiologist who looked at just the number and told me I had to take statins to get it down. I had been in the mid 200's since 2009 and no one told me I had to take statins. Generally, my LDL wasnt' bad and my HDL was good. Even at 270 in 2021, statins were not prescribed. Don't you think we sometimes get a spike in a lipid test and it is worth a bit of a wait and re-taking the test? I do all the right life-style things - 66 and 127 lbs, average 10,000 steps a day, yoga, dance, kick-boxing; but one thing I did was significantly reduce meats in my diet. There isn't much more I can do in that department unless I could tolerate a completely vegan diet, which I can't. But I also cannot tolerate feeling like an ancient old lady everyday - getting out of bed stiff and sore all over. So, like you, I decided to be non-compliant for a bit, and I'm feeling so much better.

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If your cholesterol was that high in 2021, and you were near 50-55 years old, statins were called for as pretty much standard protocol ... unless your doc felt they could get the LDL down some other way. Did you have a CAC test? Other tests indicating heart disease?

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@mayoconnectuser1

If your cholesterol was that high in 2021, and you were near 50-55 years old, statins were called for as pretty much standard protocol ... unless your doc felt they could get the LDL down some other way. Did you have a CAC test? Other tests indicating heart disease?

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In 2021, I was 63 years old and had a calcium score of 0 in 2015. When I saw the cardiologist in 2022, she ordered many tests - ultrasound, CT scan and finally MRI with contrast. She was convinced I had some kind of blockage somewhere, but I don't. I passed all with flying colors as well as a stress test. My only other red flag was high blood pressure, which is controlled well with 3 meds. My cardiologist just sent a message with his permission to take a statin break to see if my myalgias continue. He suggested maybe a lower dose other statin or repatha if we determine Lipitor to be the issue. At least now I'm not "non-compliant".

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@llynch17056

I also significantly reduced meats. I probably don’t eat red meat twice a year. I eat chicken (organic and humanely processed) and fresh caught sockeye salmon almost exclusively. I also eat organic and never eat processed food or fast food. My doctor said a completely vegetarian diet is known to reduce Chlorestrol, but, I also, am not sure I could do that.

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Good news is, I just got a reply from my cardiologist, who agreed to give me a statin break to see if myalgia improves. Small victory. He also suggested maybe we try a lower dose different statin or repatha. It feels better to have a bit of support with this now.

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@con123

Good news is, I just got a reply from my cardiologist, who agreed to give me a statin break to see if myalgia improves. Small victory. He also suggested maybe we try a lower dose different statin or repatha. It feels better to have a bit of support with this now.

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Good luck. Lower dose different statin did not help me. I can let you know about Repatha. I did it for a couple of months. Tolerable side effects. Quit it and went on wegovy. Hit the Donut Hole on wegovy so had to quit. I am feeling GREAT. Just did my new attempt at Repatha today so we’ll see.

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@con123

In 2021, I was 63 years old and had a calcium score of 0 in 2015. When I saw the cardiologist in 2022, she ordered many tests - ultrasound, CT scan and finally MRI with contrast. She was convinced I had some kind of blockage somewhere, but I don't. I passed all with flying colors as well as a stress test. My only other red flag was high blood pressure, which is controlled well with 3 meds. My cardiologist just sent a message with his permission to take a statin break to see if my myalgias continue. He suggested maybe a lower dose other statin or repatha if we determine Lipitor to be the issue. At least now I'm not "non-compliant".

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Good luck. I couldn’t tolerate any strain at any dose. I hope you can.

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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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You are right, we are lab rats. I also don’t have side effects from Repatha, but it makes you wonder what terrible effect they will find out occurs with long term use. And, like other meds, will it reduce numbers but create more cardiac events. I think it is more about profit than health, BUT, that said, I am on it and my numbers are good. However, I am concerned about long term effects. Hopefully I will have died a peaceful active old age death by then.

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@llynch17056

You are right, we are lab rats. I also don’t have side effects from Repatha, but it makes you wonder what terrible effect they will find out occurs with long term use. And, like other meds, will it reduce numbers but create more cardiac events. I think it is more about profit than health, BUT, that said, I am on it and my numbers are good. However, I am concerned about long term effects. Hopefully I will have died a peaceful active old age death by then.

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I'm so happy to hear you are tolerating Repatha - I was also a statin failure - on every type, but my heart is showing damage so I reluctantly agreed to Repatha - along with other heart meds - this week. Seems like worth trying before they decide they need to start doing stents!
One dose in and so far so good.

As far as long-term effects, I am hoping that the adverse events reporting system is accurate - seems like problems crop up right away. Few reported after a longer while on the med.

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@sueinmn

I'm so happy to hear you are tolerating Repatha - I was also a statin failure - on every type, but my heart is showing damage so I reluctantly agreed to Repatha - along with other heart meds - this week. Seems like worth trying before they decide they need to start doing stents!
One dose in and so far so good.

As far as long-term effects, I am hoping that the adverse events reporting system is accurate - seems like problems crop up right away. Few reported after a longer while on the med.

Jump to this post

I react to everything and statins made me feel like life wasn’t worth living, not depressed or suicidal, just felt too bad to have quality of life. I actually have ZERO side effects on Repatha and it has remarkably and quickly lowered my bad numbers. I swear, I almost feel better on it that normal. Weird.

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I have been on Repatha for 4 years. I started out like you, no side effects and then bam…ached in all the joints I have hurt over the life cycle of this body. They go away. It took me about 3 months before I didn’t have any side effects on Repatha. The only thing I dislike is the SureClick - hurts and bruises me to no end. I switched to the syringes.

Yeah, I read about the CV events. I don’t think it prolongs life, but taking it for 4 years has slowed down the progression of my CAD. I just had an angiogram in April - had 20% regression of plaque in my LAD. Of course we don’t know if it just the Repatha…but the cocktail that I take must be doing something. I feel much better than after my NSTEMI. I still have episodes, but so much better.

I am taking Repatha with Nexletol. I am a bit weird, Repatha only lowered my LDL 50% so had to add something to lower it a little more. Nexletol is not a statin - I have had no side effects from it at all. LDL is still higher than they want it. I do everything they ask, exercise, modified Mediterranean diet and much lower stress, but it is what it is.

All the best to you on this journey. I hope the Repatha will work well for you, eventually. It also lowers Lp(a)…a nice side effect. Hugs!

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