Repatha, side effects and what comes next?

@fmulhare Is your doctor aware that you have stopped the Repatha? When you say your calcium score and blood pressure have increased, are they beyond normal ranges now?
If you are having competing issues with blood pressure, calcium scores and repeated infections, perhaps a cardiologist can do some more exploration to uncover the cause.

fmulhare, I didn't realize that plaque score increase on Repatha. Your post got me; both statins and pcks9 inhibitors increase plaque scores -- they think by solidifying the fatty lipids that aren't reflected on Calc testing.
The infection risk with PCSK9s are more understood as viruses can use the increased ldl receptors as entry ways into the cells. Increased CD 8 levels allows Hep C entry into the liver.
I wonder if anyone takes Repatha without having digestive issues.
Thanks for your post.

Earlier this month after doing some research and then hoping the first Repatha injection would get me on my wat to a lower LDL, I picked up my rx and gave myself my first dose. The first week was uneventful although I noticed I was coughing more again (I have BE too). But as the second weekend approached, not only was I coughing a lot more, I was also coughing up significantly more mucous so that by Friday it was clear that I was experiencing a full blown exacerbation of BE. I checked in w my doctor and began my antibiotic rx. I also noticed I was experiencing dizziness/unbalance while hiking and thumb joints were becoming quite painful. Monday morning I suddenly found myself feeling like I was unable to catch my breath! That was scary. My oxygen level was fine and so was my BP. My Apple watch did not indicate any arrhythmia either. I immediately sat down and started my portable oxygen machine and just relaxed for a while. The sensation passed. So, I checked in w my cardiologist and said I think the Repatha and I do not agree. My cardiologist insisted my symptoms were probably due to a virus or cold but I replied that I did not feel sick in the sense of having a cold or the flu or for that matter Covid. The rx antiviotic kicked in after 48 hours and my coughing diminished but I was still coughing up mucous. So, I decided to make an appt with my pulmonologist to weigh the risks and benefits of Repatha. I certainly do not want to have these kinds of events on a continuing basis because my BE will continue to get worse, I will need to take a powerful rx each time and this time I am also taking a steroid inhaler to reduce the inflammation. Longer story short, for the last two days not just my thumbs but all my joints hurt and having had a bout with arthritis about 50 years ago, I know what that feels like and do not want this either! No fever at all.
So, just checking in. I will report these symptoms and will look for something else. Since my calcium score is in the middle for my age (81) and my Cholesterol/HDL ration is 3.6, I am hoping to try a different water based statin and maybe just aim for a total LDL under 100. We will see. I hope also that others have more luck with this medication which does appear to help.

Repatha disabled my shoulders. Quit after 2 doses. Went from 50 pushups every morning to 0. Still having issues 5 months later. Physical therapy helped a little but shoulder pain is debilitating. From 50 pushups to grinding my teeth putting on a coat and no help from docs!!!

@con123 I was really enjoying Repatha and the way it made my cholesterol come down with no joint pain. I started noticing flushing on my face. It was very hot and always really pink and felt swollen. And then around the 9th injection my reactions became a lot more irritating. I developed a very severe intense itch in my scalp on my neck and my upper back. It’s constant and actually makes me feel a bit crazy I do have to stop Repatha because my reaction is apparently an allergic sensitivity that is on the severe scale. So sad I thought I had found something that would work on high cholesterol. Sure hope it works for you and that you have no reactions.

@plumpudding I took one injection and not only had flushing, but a bad injection site reaction and cold- like symptoms. Can’t tolerate Repatha either. I’m currently trying a supplement with Bergamot and will retest lipids after the holidays. I agreed to add red yeast rice if the numbers were still too high. Dr mentioned trying Nexletol in the future but he seems ok with labeling me statin intolerant.

I want to add to my post re my decision to stop taking Repatha. I developed costochondritis meaning very sharp pain in the area where cartilage connects to my sternum. Had CT scan with contrast to rule out gall bladder, intestinal and pancreas problems as the pain was a sudden sharp tearing feeling that radiated to my shoulders. It has slowly lessened and I did nothing I know of to exascerbate it in the first place. Years ago I had an arthritis flare so it is possible I am just more sensitive to things. Hopefully others will benefit from this med. I will be closely paying attention to my diet and will try a low dose of pravastatin

@desertdwellerjh I am still having repercussions from Repatha after stopping Repatha for 15 months. I was on it for four years. First two years were less symptoms, but the last two increased every time I gave myself an injection. The last two years were torture. It took a while for me to figure out what was causing all of my problems.
My Rheumatologist said that I do not have Rheumatoid arthritis, and that it was severe damage from the Repatha. She told me that she sees this a lot in all of the injectable cholesterol meds.
They finally figured out the rest of the long term damage that the Repatha caused after a year of tests. It caused significant vein leakage in both legs. I have to have procedures to correct the damage that was done.
Stick to your gut feelings, as my doctor did not think it was Repatha and told me to keep using it. After months and months of increased pain, inflammation, inability to move joints, snapping tendons, hair loss, constant bladder infections, fingers do not work like they should, dragging left foot and severe leg and abdominal edema to the point of not being able to function, he took me off of it. I was right. It was Repatha all along.
I am still in the recovery process from that drug.
Good luck!

70 year old male with 3 stents in March 2025. Calcium score 912. 100% blockage in ramus, 85% in both RCA and LCX. Cardio put me on Repatha after stents because I cannot take statins or red yeast rice or any other med that affects pancreas. Was hospitalized twice for acute pancreatitus after taking statins or others that affect pancreas.
I am obese with a BMI of 31 but at 6'3" and 255 lbs, I'm not what you would consider morbid. I try to exercise by mostly walking 2-3 miles at 18.5 pace and have adopted low carb diet. I take plant sterols, CoQ10, and other heart healthy supplements. I feel pretty good without any observed problems with joints, pain etc. as mentioned in this thread believed to be reactions to Repatha.

So, y'all are scaring me.

Is there something else that will reduce my LDL, boost my HDL, and lower my triglycerides as effectively as Repatha? Repatha brought me from 300 triglycerides and 125 LDL, with HDL at 40 to:
Triglycerides at 125, LDL at 69, and HDL at 50.
Hopefully I won't have any adverse effects long term but I still would like to try something else.
Any viable solutions are welcomed. Thanks all for the info.

@ibchispas what you are seeing here, like most other chat boards, are from those people with problems or reactions to the med. What we're not seeing are from those where Repatha or another drug has been successful and without side effects.

I'm also a 70 year old male and just into year 3 with Repatha (along with 20+ years of a statin). No side effects and it's lowered my LDL from 109 down to 17.

I'm watching other's reactions to know what I might see if something shows up later, but so far, all is good.