Started Repatha - Side Effects

Hi, I am a newbie here. Female, 68 years old, and have been seeing a cardiologist since March after requesting a CAC and it coming back 1887! After all the tests, I have been diagnosed with CAD, PAD, small blockage in bottom of my heart, and the calcified plaque all over. Trying to avoid a stent for now. I had been on statins for over 25-30 years and had calf pain for probaby that long, when I walked to fast, or went up hills. Drs. always just checked my pulse on my ankles and said it was good. I also have Type 1 diabetes for 55 years, Hashimotos Thyroiditis. I just started Repatha last week and I praying for a miracle. I thought I would join here to try to keep up with peoples experiences.

I do feel that I have been let down by the medical community. With the diabetes, I have seen an endocrinologist every three months, plus a GP prob twice a year. I was never told that I was in a serious situation and yet I have seen that it takes decades for the calcium to continue to collect like this. Why don't they do the CAC tests to early and not wait until we are of this age? I had just gotten a letter from my GP in January that I was doing good, keep sugars down like I have, watch cholesterol, etc. then to find out I am in the 90 % for having a heart problem in within 5 years. I am just having a hard time dealing with this while at the same time trying to do whatever I can to possibly make it better or try to. Any advice from others? Thanks for listening!

Thanks for your interest. No, I will not be returning to Repatha. I have not yet tried Inclisiran and my LDL is not as high as before Repatha but not good. 160.

I am a bit concerned that an siRNA may not leave the body easily or quickly. There may be unplanned effects and they may last a while. I have MS so nothing medical is obvious. What I read may or may not be valid in this old, idiosyncratic body.

That is very interesting. Thank you for suggesting it. Inclisiran can have bad side effects and it’s a twice a year injection, so if I were to have the side effects, which I probably would, you can’t just stop taking it, it’s in your system for 6 months. That really scares me. Side effects: more expensive and have side effects such as injection site reactions (e.g., redness, swelling, pain), flu-like symptoms (e.g., fatigue, headache), and symptoms of upper respiratory tract infections, which need to be taken into consideration when using them clinically. My body is so tired of experimenting with drugs that make me so sick and take so long to recover.

You make a good point about communication in medicine, jnj. It made me think of Siddhartha Mukargee’s books. He is the master and the great genius on the topic of communication between patient and doctor, and I should perhaps mention Chekov as in the running for the Gold medal. Mukargee writes on cancer, cells, genes, but it’s real life, modern medical cases and how effective medicine is based on the patient’s story. My advice is to read Mukargee for realism and think about Chekov for inspiration.

@llyllynch17056
I hear you. I hope you are doing well.

Two things I have learned:
- the drug stays in your body 2 days.
- every drug does something different. Lightbulb moment for me was to figure out exactly what is happening with my body and choose a drug accordingly. This is a different approach than the “spray and pray”, let’s try something and see if it works approach. (At least minimizing guesses, and making personalized educated ones).

How are plant sterols working for you?

Hi @tatiana987. I like your suggestion. Repatha didn’t work well for me. I have now had 5 Inclisiran injections and my cholesterol has never been better controlled. A previous doctor kept telling me Inclisiran is the same thing and won’t work for me. He was wrong!

Are you taking Repatha again, or anything else for high cholesterol? Have you been able to learn more about siRNA type drugs since we last “chatted”?

I am now taking Nexletol with prevastatin.

The plant sterols didn’t lower my cholesterol at all. I was sorely disappointed. I was so hopeful. I am looking for a new cardiologist. I left a message for a DO cardiologist. I think that’s what I need. Someone that will look at me as a whole and how my body reacts and talk to me compassionately and suggest the course of action with my best interest in mind.

Boo, @llynch17056! I am sorry plant sterols didn’t work well. I understand your frustration in running through all your options.

Mayo Clinic is a place to consider. After a lifetime of trying, I cannot be more pleased! You can contact them yourself or ask your primary care to contact them.
-Statin Intolerance Services: https://www.mayoclinic.org/departments-centers/statin-intolerance-service/overview/ovc-20442137
- Contact them for an appointment: http://mayocl.in/1mtmR63

Please, will you come back and report your progress?