Started Repatha - Side Effects

I tried that regime, too. I’m happy for you. It didn’t work for me. It reduced the side effects, but the side effects still interfered with my life where I couldn’t do things I enjoyed doing. I wish you luck. At this point I have given up on statins.

I finally was able to visit the lipids specialist. He was not worried about my 218 calcium score since I had been on Prevastatin for many years. As for the Repatha horrible GI side effects that literally put me in bed in horrid pain, he said that GI effects are “very rare” but very extreme. I was given Nexletol by my internist until I saw the lipids specialist, and I was honestly amazed at the overall (208), HDL, and LDL scores. Formally diagnosed with familial hypercholesterolemia, highly suspects Lp(a). More blood work scheduled, but trying a combo of Nexletol, Pravaststin, and possibly revisiting Zetia later. I took myself off aspirin (after reading in this site about GI issues-thank you!) and I may try taking low dose aspirin every three days if tolerated. Finally feel like I can fight again my family cholesterol genetics!

Lordy, that’s a lot of medicine. I had LPa of 234 in May 2023. It was down to 168 in March 2025. I did this through life style changes. Organic clean food, weight control and exercise. I started taking Beta Sitosterol 4 months ago. I just had blood work done and haven’t gotten back the LPa yet. My doctor told me to quit worrying about it. I can’t take statins/Repatha. My cholesterol stays in the 220s, my good cholesterol is always high, my triglycerides are good and my cholesterol ratio (the greatest indicator of fatal heart attacks) stays around 3. He said to quit worrying about the cholesterol number. I agree. I also quit taking meds that make me feel bad.

I think our paths have been very similar from previous posts. I’ll try this med. combo to see what we can do (or until side effects sidelines me) with my numbers.

What I have learned is that a higher cholesterol number alone doesn’t necessarily justify taking cholesterol lowering drugs. There is the whole picture as reflected in the cholesterol ratio number. Sometimes people have elevated bad cholesterol but high good cholesterol and a great ratio number. I’m interested in my new LPa number , too, that I don’t have yet. Too many doctors say “your cholesterol number is high you HAVE to take these drugs.” That’s a lazy attitude, maybe even incompetence. That’s what my cardiologist did. All he cared about was that one number, not about what the drugs did to me or look further into my other numbers.

I am two years in with great results with cholesterol. However, I have severe leg cramps and my walking has become very jerky with weak muscles. Yes, I am 80+ but have been very active.

Repatha gave me muscle atrophy and severe joint pain.

Hmmm ... it's easy to consider someone lazy or incompetent if they don't agree with you. While you have locked onto the ratio as your rationale, those doctors and specialist doctors didn't agree - perhaps for well-educated and experienced reasons?

I can’t take statins. PERIOD. I tried for MANY years, different ones, different doses. They ALL make me very sick and turn me from an active person to bed ridden. There are many people like me. There is a lot of information out there about that. My cardiologist said, and I quote, “ if you cannot take statins then I have nothing for you.” That is lazy and incompetent. Cardiology groups now have specialists to help those that can’t take the drugs, just not this particular cardiology group. AND, my Internist agreed that since I can’t take the drugs we need to look at what we can do and consider what we are faced with. HE said “what good is a drug if you can’t get out of bed?” HE said, “your bad cholesterol number is high but it’s been stable for 20 years AND your ratio is good so quit worrying.”

“Ratio” is a scientific fact to consider. It is not my “rationale.”

AND, it is not a matter of “not agreeing with me,” I don’t care if you don’t agree with me, I care whether you are so short sighted that all you have in your treatment portfolio is statins.

You sound angry. I'm sorry.

I still find and have found all my doctors and medical professionals to be far more knowledgeable than I am. And, to be clear, I read and study quite a bit on many medical topics.

I generally find that when folks are angry they say things like "lazy and incompetent," but as one gets further into technical detail, well, they are shown to not be as competent as those medical professionals they describe so negatively.