Repatha, side effects and what comes next?

@molliecarey1664, Great question about side effects from what I am finally having success with. Thank you for asking.

I was told by one doctor that what I am taking now, Leqvio works the same Repatha and Praluent that I can’t take. They are not the same drugs! I do take Leqvio every 6 months. I confirmed with my pharmacist the drug stays in the body a couple days.

I had one rough night after injection one, another semi-rough night after the second injection (it was a night later). Nothing after injections for a time. I believe my latest injection was #6, and I could not believe it….for the first time I not only did not have side effects, my body felt absolutely heavenly for 24-36 hours. I am looking to get my next injection in April and looking forward to how I will feel following.

Have you decided what you will do about treating? Are you going to try your doctor’s suggestion and try Bempedoic Acid?

@jlharsh well, I'm not happy because he wrote the prescription for praulent for the big dose of 150 every 28 days when we talked about starting what most people do at 75every 2 weeks, so now I'm more worried about side effects. What were your side effects with praulent? I mean, why can't you take it~ so are you saying the you were told the leqvio stays in the body for 2 days only ?

Yes, Leqvio is given every 6 months but the medicine does not stay in your body that long. I recommend having a conversation with your pharmacist about it. At least, that really helped my comfort level.

I only had one or two shots of Praluent, and they were following a 3-month break after discontinuing Repatha. The drug didn’t lower my LDL much. Also, side effects gradually snuck up and I finally woke up one night immediately thinking I had forgotten to breathe. Of course, that was not the case. My symptoms have all stemmed from that area/feeling in my chest/abdomen. I felt a bit better after a break so thought Praluent may be different, but no.

Do you plan to talk to your doctor to find out why your prescription for the bigger dose of Praluent? Is Leqvio something you may want to try?

@scpatient24 I've been on Repatha for 8 weeks now. I can deal with the flu/sinus issues because I have most of my life anyway. What has gotten me is serious constipation. I just started MiraLAX on my own because of the holiday weekend. I've also had some issues with hypertension and when so, doubled up on my B/P meds. Maybe it's a SC thing?? 🙂
I'll talk with my Cardiologist tomorrow...

@jlharsh strange that you said that you woke up and forgot if you were breathing. I had a similar reaction with Repatha and all I wanted to do is sleep and eat. I am currently off it and my GP does not know what to give me. My cardiologist is on vacation. So I am on nothing right now. What does anyone suggest?

@mdeblaey539

I am not a medically trained person so what I can tell you my experience, in hindsight. I got worse rather than better once discontinuing Repatha, and I believe this is because of things we threw at it and not understanding my unique body/conditions.

You ask for suggestions. If it were me I would do the opposite of what I was feeling to get the medication out of my body. It takes at least 3 months since it stays there so long. Figure out how to be as regularly active as I can, eat healthy….basically a heart healthy lifestyle to get your body doing all it can to get the drug out of your system.

Getting to doctors that figured out “me” helped. So…I would keep pushing my doctor(s). Since Repatha works through the liver I would focus my learning and questions there.

Would your GP be able to consult with GI for recommendations?

@jlharsh my GP can talk to both doctors so I guess I should ask him to do it. Thank you for you insight. I appreciate it.

@mdeblaey539

I would like to know how you are doing and hear how you navigate side effects.

Will you come back and provide updates?

@jlharsh
I also am unable to take Statins and Repatha was even worse and have residual effects from the Repatha.
To lower my cholesterol I have been drinking Earl Grey Tea because it has certified Bergamot oil from Calabria, Italy.
Bergamot is known for lowering cholesterol.
My last testing was 188 and 200, although the LDL is still too high for my cardiologist, I think it is not so bad.
I am 74, I recently had a scan for calcium in the heart, that led to a stress test/echo cardiogram, that led to an angiogram, then finally a rotational atherectomy and 2 stents placed in my left descending artery - which is Nick named the widow-maker which had 90% blockage. Afterward there were several medications my Dr. wanted me to take but being on medicare unable to pay my parts large sum. So I am only on a baby aspirin, a blood thinner, which is temporary and BP meds.
Personally I think Statins are terrible drugs and very over prescribed...

@mlasky1120, welcome to Mayo Clinic Connect! You have found a good place to share experiences about living with heart health and high cholesterol.

I am tagging a few that may have information to share or know others that do: @gloaming, @ckscoville and @dlkreps

I am concerned that your doctor may not have shared the severity of your situation with you. Your mention of a 90% blockage in the widow-maker, your LDL of 188 and needing to take blood pressure medications do not sound like a good combination. You did not say how much calcium showed up on your scan but it does sound like it must have been concerning as well since it is what began your cascade of testing and eventually stents.

It sounds like you have a wise doctor wanting you to take several medications. I definitely agree with you that they can have side effects but unfortunately, there are times when their benefits are much stronger. I struggled with every cholesterol drug and never had mine under control. I finally found a doctor who was able to figure out how to treat my unique situation and get my numbers down to a reasonable level.

Here is an overview of cholesterol providing details of what levels are appropriate. You may find it helpful if you have not seen it.

- Mayo Clinic Cholesterol Overview
https://www.mayoclinic.org/diseases-conditions/high-blood-cholesterol/diagnosis-treatment/drc-20350806
I am curious if you are having symptoms. What prompted you initially to get a calcium scan? How much has drinking Earl Grey Tea lowered your LDL? I am full of questions…..has your doctor shared what your current risk level is?