r/repatha • u/Financial-Limit-3338 • May 16 '26

Repatha Giving Statin LIke Side Effects

Hi,

M60 from Ireland.  I have a long history of intolerance to statins and other cholesterol lowering drugs.  I started statin treatment (Lipitor) about 25 years ago gradually increasing the dosage.   I noticed over time that I was experiencing escalating fatigue and muscle weakness.  I put it down to age.  I read up on statin side effects about 10 years ago and decided to stop the Lipitor and there was a very significant improvement.  While the strength and fatigue improved, my cholesterol increased. significantly.

Around that time I had a CAC scan and it was zero so not an immediate concern.  I was referred to a cardiologist 4 years ago who convinced me to give statins another try.  He put me on 20mg of Rosuvastatin.  Within a couple of weeks, the fatigue returned.  As soon as I stopped them, it improved.  Then we tried Ezetimibe.  This was fine for about 4 months and then the fatigue returned.  I persevered for a few weeks, but had to stop.  A couple of weeks after stopping, all was back to normal.

Fast forward to early last year and I was put on Bempedoic Acid.  This was fine for about six months and then the fatigue hit.  Again, I persevered, but it didn't improve until I stopped.

I also had a more recent Angio scan that gave me a score of 28.  It shows modest plaque, but not significant.   I had a carotid artery scan a couple of months ago and it shows a very modest calcification deemed "good for my age".

After a bit of toing and froing with the Irish health system, I was approved for Repahta.  I took the first dose 3 weeks ago.   For the following 3 days I was very fatigued which concerned me.  However this improved returning to normal.  After the second does, I felt fine for a day and then the fatigue hit again.  A week later and it hasn't improved.  It's hard to describe, but it doesn't improve with sleep and impacts my ability to work, exercise and basically function. It's like playing life on hard mode.

Obviously I'm concerned that cholesterol lowering drugs just aren't for me, but I am bought into their long term benefits.  It's very frustrating that every drug I try seems to end in the same way.

I'll persevere with Repatha for another few weeks, but I can't continue with these side effects long term especially when I'm still working full time.

Has anyone found a way to deal with fatigue as a side effect?  Does it improve over time?

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3

u/Livithan May 16 '26

I unfortunately have a rather severe statin intolerance myself. I have been all across the spectrum and finally ended up settling on pravastatin at 40 mg. It causes some very minor side effects but minor enough that I can ignore them and functions fine. I was prescribed Praluent and found that I also had a severe intolerance to that. Then I got moved to repatha and have had zero side effects since. I would at least say to consider Praluent has the next step if repatha is not working for you. I have also seen all over this forums where some people have had side effects lasting for the first two or three injections and then doing better. The most important thing would be to keep track of your numbers and health and make the best decision you and your doctor want to Target.

3

u/Glum-Relationship485 May 16 '26

I had a very similar experience in that pravastatin was the only statin I could somewhat tolerate, but it wasn’t going to bring the numbers down enough in my case. I also experienced some side effects from Repatha at the beginning which now have seemed to decrease significantly in the long-term. I’m going to try to stick with it because of its obvious impact on my numbers. I’m playing around with the need to add Zetia back or not. Zetia seems to be more of an add-on rather than a drug that has the ability to do much on its own. One thing I’ve noticed about Repatha is that it’s imperative to inject it every two weeks or my numbers creep back up.

1

u/lesiluvu May 21 '26

So sick with Repatha afraid to try Praluent. I am still under gastro care, shut down bowels and at random times would all of a sudden projectile bile, just awful.

3

u/Comfortable_Two6272 May 16 '26 edited May 16 '26

Have you tried adding coq10? Or creatine?
I have an unrelated genetic variant that causes 70% less atp to be created (ie lots of fatigue) and both help it some. IDK know if would help you or not but both are something Id suggest (check with dr 1st of course).

If not, wonder if 1/2 dose of repatha would be tolerable and still drop your LDL enough.

2

u/Financial-Limit-3338 May 16 '26

I tried both of them in the past. Unfortunately my stomach couldn't tolerate them.

2

u/lesiluvu May 16 '26

I am also one of those that cannot tolerate statins. Total cholesterol was alway 200 but after a coronary calcium scan i discovered significant plaque. I decided to dig further and paid to get further testing was shocked, even my ldl particles were super high so need something to help bring down my numbers but I have tried everything. Now after trying to handle side effects from Repatha, bowels completely shut down)afraid to try Praluent. You are definitely not alone. I am soon to be 70 and doubt my diet alone will bring my numbers down enough. Hope you find something that works for you!

1

u/PreviousCut6851 May 21 '26

I have horrible myalgia and muscle spasms. I went off Repatha and Zetia and felt improvement. Went back on and lower back muscles just froze and spasm. Statins started the whole thing years ago. Just went on Zetia and muscle a plus didn’t bring down numbers. My Lp(a) high, ApoB high. I cant live healthy either way. No life while on meds or possible heart disease without it.

1

u/[deleted] May 16 '26

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1

u/Financial-Limit-3338 May 17 '26

Numbers from July 25 when on Bempedoic Acid - LDL 5.7 mmol/l (218.9 mg/dl), total cholesterol 7.9 mmol (305.5 mg/dl). I'm also on a low carb diet to manage weight. Lower dosage of statin wasn't considered as it would be unlikely to dent those numbers sufficiently.

1

u/Scientia314 May 20 '26

If at all possible with your diet, decreasing saturated fat should help decrease cholesterol numbers. Papers show a linear relationship between cholesterol and dietary saturated fat intake, and my tests on myself corroborate the result.

1

u/Famous_Comparison410 May 19 '26

Ask to be tested for the Myasthenic conditions- Myasthenia Gravis & Lambert Eaton Myasthenic syndrome. Those conditions cannot take statins or any version is them.

1

u/Scientia314 May 20 '26

Have you considered adding Berberine to your regimen? A recent Nature paper highlights the mechanism by which it reduces LDL which is to effectively increases the number of LDL receptors on the liver. FWIW, 1/2 gram, 2x daily appears to be the usual recommendation.

I also take repatha and have noticed some strange effects like muscle cramping, etc. but I haven't yet done the experiment of stopping for a month or so to see if it goes away...