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Started Repatha - Side Effects
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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Good luck. My cardiologist wouldn’t even discuss anything but statins and Repatha. Literally said that. But, my internist said he had heard of Betasistosteroil to reduce LPa.
Yes, I hear you. I really like my cardiologist, but his specialty is renal, so of course he wants to do a renal anteriogram, and get that number down to under 200, where it has not been since I was in my 40's and now 66. I have a calcium score of 0 and passed all tests. I'm going to have a serious talk about number vs. quality of life. I guess if I refuse his tests, I walk away. I also have an issue with labile blood pressure which upsets all the doctors I see - too high, too low, just right - I never know...
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1 ReactionI get it. I did have to walk away from my cardiologist when he said “if you don’t take statins or Repatha, then, I have nothing for you.” I said “but, I can’t take them due to extreme side effects and you are my heart doctor, so how can you say that’s all you will do?” He stuck with it. I walked away. I went through a very fearful time because my cardiologist lead me to believe I was in dire danger of death. My internist said “your weight is good, you eat healthy, your cholesterol is high but it’s been that way for 20 years and it’s stable, you exercise, you don’t drink or smoke, you’re ok.”
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1 ReactionI had a serious talk with him and he agreed and gave me full permission to stop lipid lowering drugs and that some people cannot tolerate them. I was so relieved. He mentioned fish oil which I take and red rice yeast. Looked at my scans again and said there was only a slim chance an angiogram would show an abnormality. So I’m off the hook on that one!
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1 ReactionI wish my cardiologist was cooperative. He absolutely would not even suggest care without statins or Repatha. Dr. Marty Malory wrote Blind Spots which includes a chapter on how the myth of statins got started.
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1 Reactionhttps://www.facebook.com/share/r/16P6oUmmk8/?mibextid=wwXIfr
I hope you can view this.
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1 ReactionHi, did your side effects subside? I got muscle pain from statins so I had to discontinue them. I’ve been on Repatha for a few months and my LDL has dropped to about 70. All was well and good until just over the three month mark and now I have severe body aches and pains, especially in my legs. My cardiologist doesn’t seem to believe it’s the Repatha for some reason but had me discontinue it to see if the pain subsided. My last injection was 3 weeks ago and the pain hasn’t subsided yet. I’ve tried Advil, Xanax and magnesium without any relief. I’m wondering other people’s experiences, how long it took for the pain to stop after discontinuing, and how they treated it. Thanks in advance.
Hi @repathaconcerns, and welcome to Mayo Clinic Connect. I am sorry you are having so many problems treating your cholesterol. Repatha did not work for me, either.
The half-life of the drug staying in your body is 14-17 days, so it is going to hang around a while. It will take about 3 months. One thing that has been a constant for me has been to stretch and stay active!
You mention having problems with statins, and now Repatha. Please be encouraged knowing there are other options. Mayo Clinic Cardiology’s Statin Intolerance Clinic may be a good resource for you and/or your cardiologist.
Your cardiologist may not know what to expect with Repatha. Did they tell you how long of a break they’d recommend?
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2 ReactionsWhat recommendations does the Mayo Clinic Cardiology’s Statin Intolerance Clinic make. I cannot take statins, any kind at any dose, or Repatha. I put my body through hell trying and retrying these drugs. The recoveries were slow. I still have remarkable low back pain from Repatha over three months after stopping it. I am thinking there is permanent damage. I exercise, keep a normal weight, eat organic healthy food and don’t smoke or drink. Would the Mayo Clinic Cardiology’s Statin Intolerance Clinic have anything for me? I tried red yeast rice which gave me “statin like” side effects. I currently take Beta Sitosterol. I left my cardiologist when he told me “I have nothing for you if you cannot take statins or Repatha.” LDL 184, LPa 168, HDL 84
I feel your pain @llynch17056. You have to be so frustrated. It feels like a “spray and pray” experiment and sounds like you are not recovering well. I am sorry. You are doing the absolute best thing for your body by staying active and eating healthy, something there is no downside to. Kudos!
My perspective of Mayo is that they first figure out how an individual’s unique body functions and then matches specific drugs to what is needed. They take side effects seriously and do what is needed to address them. I’m not sure that really answers your question, so I found a link that provides a summary of their approach. I am confident they could help you (and your nagging side effects).
- Mayo’s Statin Intolerance Clinic here: https://www.mayoclinic.org/departments-centers/statin-intolerance-service/overview/ovc-20442137
- Make an appointment: http://mayocl.in/1mtmR63
You mention leaving your cardiologist. Are you working with a different doctor now? You mention lower back pain from Repatha. What does it feel like?