Repatha, side effects and what comes next?

Posted by donlynn @donlynn, Mar 14, 2025

Did anyone here have to stop Repatha injections due to side effects?

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Profile picture for tkh25 @tkh25

@agb thank you! Statins have caused my liver enzymes to rise and my next option is repatha. You have made me feel like I’m not doomed for suffering from this drug or I have a chance. Thank you. I wish more would post that have had good results.

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@tkh25
I had the same issues with pancreas issues with statins. In fact, my lipase levels caused pancreatitis with hospital stays twice.
I have been on Repatha now for several
Months and my cholesterol are great. I now have to still address my triglycerides. But I don’t have any side affects after the first couple months. Even then it was only a skin reaction with itching but dissipated after about 4 injections.

Good luck! It has been a great alternative for me.

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I have been on Repatha for about 3 years, as others have said it is a game changer. The day I inject I take an Advil and my Multi vitamin for sure and I might be a little tired the next day but that is it. I know some people get stomach issues for a couple days but honestly take a Pepsid, this drug is such a life saver that If I have to do a couple things for a day or two I will gladly do it. Plus after you have been on it for a while they do go away, at least for me they did. At least give it a try.

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Profile picture for Janell, Volunteer Mentor @jlharsh

Hi @jrm78, welcome to Connect! I am sorry you are having problems, sounding like Repatha may be the culprit. It is important to pay attention to when you take shots and when you have breathing problems. You may find a connection, and if so it may be sneaky. It is a good thing you are checking with your cardiologist and pulmonologist to make sure something else isn’t going on. I understand why you consider Repatha as the cause because of the timing of when you started having problems.

Like you, I found the drug company that makes Repatha to be less than helpful. My experience was that the night following injection #9 I abruptly woke and sat straight up in bed thinking I had forgotten to breathe.

I searched “Repatha breathing” from the home page and found discussions and comments you may find helpful, if you have not reviewed already.
https://connect.mayoclinic.org/search/
You mention having more testing coming up. I am interested to know what you find out and hope you come back and provide and update.

Do you plan to continue Repatha?

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@jlharsh had a heart stent 7 months ago. She started taking her path though six weeks ago. In the past month, I've been in the urgent, characterized, and that you are once with difficulty breathing period can't lay down at night, flat or on my side. It's because I can't breathe. Send a i's will tell you that repairta is connected with portal hypertension, which is difficulty laying flat period I now have a rhythmia which I didn't have before. My ekg has shown ice fields are in resting heart rate of two hundred and twenty five weeks per minute . In the past six weeks, i've went downhill fast

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Profile picture for ss52 @ss52

@jlharsh had a heart stent 7 months ago. She started taking her path though six weeks ago. In the past month, I've been in the urgent, characterized, and that you are once with difficulty breathing period can't lay down at night, flat or on my side. It's because I can't breathe. Send a i's will tell you that repairta is connected with portal hypertension, which is difficulty laying flat period I now have a rhythmia which I didn't have before. My ekg has shown ice fields are in resting heart rate of two hundred and twenty five weeks per minute . In the past six weeks, i've went downhill fast

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@ss52 but no issues, the first two weeks from using it

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Profile picture for desertdwellerjh @desertdwellerjh

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.

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@desertdwellerjh

Major breathing issues especially laying flat. Mucous yes I even got arrhythmia with afib on read up on repatha and afib

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Profile picture for ss52 @ss52

@jlharsh had a heart stent 7 months ago. She started taking her path though six weeks ago. In the past month, I've been in the urgent, characterized, and that you are once with difficulty breathing period can't lay down at night, flat or on my side. It's because I can't breathe. Send a i's will tell you that repairta is connected with portal hypertension, which is difficulty laying flat period I now have a rhythmia which I didn't have before. My ekg has shown ice fields are in resting heart rate of two hundred and twenty five weeks per minute . In the past six weeks, i've went downhill fast

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@ss52
I am glad to see you reply to my comment here and I also notice you replied to another of my comments in a different discussion about Repatha. You no doubt saw my description about not being able to breathe. You must be scared and definitely will benefit from talking to your doctor about side effects and discontinuing the injections. There are other options.

Rather than duplicate comments I thought I would provide a link to what I just wrote to you in the other discussion, Anyone Stop Taking Repatha After Trying? This way others can see both discussions that may be helpful. https://connect.mayoclinic.org/comment/1497584/

It sounds like you are having increasingly worse and worse symptoms the more injections you take. Have you talked to your doctor?

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Profile picture for lkay00 @lkay00

I started Repatha end of May for ldl of 180. Previously had bad reaction to statins. Injections every 2 weeks with increasing side effects after each injection. Ldl came down to 40. Arm pain, body aches, gi symptoms, headache etc. Had f/u with PA and she said keep taking. She had not heard of arm pain or headache. A few days later, after my next injection I experienced worse symptom and was hospitalized for pancreatitis. I told all dr.s seen during my stay that I thought it was from Repatha, they all said no. I do not drink, have had gallbladder out and CT did not see any stones in bile duct. When I followed up with my GI dr. he thought it was definitely related. This was mid July. Have stopped Repatha and all side effects resolved. Hospitalized 5 days and reported to website for drug reporting. Did not receive any feedback. Next visit with PA and she said drug reps have not reported this issue associated with their drug. Anyone else have any issues like this?

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@lkay00 I talked to Amgen and they were helpful, seemed interested, but I was using two of their monoclonal antibodies and had serious problems with falls.

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Profile picture for writer418 @writer418

Repatha lowered my LDL to an astonishing degree and I’ve never encountered any side effects.

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@writer418
ditto
I even asked my Cardiologist if ldl could get too low. Very fortunate that I have no bothersome side effects. Have been taking it for 2 years.

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I have been on Repatha for 2.5 years and my brother for about 7 years. We have no side effects that we know of.

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Profile picture for mztaylor @mztaylor

@writer418
ditto
I even asked my Cardiologist if ldl could get too low. Very fortunate that I have no bothersome side effects. Have been taking it for 2 years.

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@mztaylor when mine was 18 and then no reading, I was told it needed to be around 25 and to stop taking statins

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