Inclisiran Injections for Cholesterol

@lenmayo this comment is not helpful. Familial LDL is a problem that needs additional help sometimes despite diet and exercise.

@jlharsh , @dlkreps, @tiburon Hi Everyone I thought I would share my recent journey getting approved for Repatha. A bit about my numbers and medications. I was told maybe a year ago that due to my Heart transplant they wanted my LDL as low as possible. Which as i found out later there shooting for under 55. Ive been around 60-80 most of the time over my life and at one point was over 100 maybe 10 years ago. Back then i started on Simvastatin the highest dose and found I got sever cramps in my calves. I could alleviate the pain by standing up and putting weight on the leg but it became so frequent it even woke me up. So my doctor took me off it and I tried using dieting more.

Then comes the era that my heart was becoming worse with rhythm problems had a pacemaker and de-fibulator. While dealing with that we were not watching the cholesterol as much (at least i wasn't) and 8 years ago I ended up at Mayo Phoenix and received a Heart transplant.
Well now the discussion about LDL returned and Mayo started me on Atorvastatin this one I've been on now for 8 years and i still get that leg cramp once in a while but a lot less often maybe every few months and the same trick still works plus it only happens once i wake up in the morning. So that i can deal with.

Now recently they found a heart artery with a 70 % blockage and put in a stent. This prompted my PCP to check other areas in my neck and we found another blockage less than 50 %. So Mayo at this point has put me also on Ezetimibe 10 MG daily and got me approved for Repatha shot every 2 weeks. I'll be seeing my Doctors over the next 2 weeks and another Lipids lab will be run on the 30th. My last labs taken before the Repatha was at 66 so ill see soon how the Repatha is doing.

I don't know for sure how Mayo got approval but I was told by a nurse that typically to get approved for Repatha they need a history on a statin to show how your doing and im guessing maybe the discovery of the blockage helped also. So i hope that may help in getting approved for what ever you may need to get approved. Ill let you know what my numbers are after the 30th.
Have a Blessed Day

@danab I started repatha in 2012 and it lowered my LDL quickly. I have the genetic cholesterol (fh) with an elevated LP (a) so I definitely qualified for it . All statins gave me severe leg pain so those are not an option. I hope the repatha does you well

@19281928 thanks just took my 4th shot Saturday and I'll be tested this coming Friday. Hoping for the best.

I have had 3 shots of Leqvio. Back pain after every shot. Worsened with each one. Red spots on skin. Worse after each shot. Third shot triggered severe yeast infection. I’m done with it.

@jayscott, welcome to Mayo Clinic Connect. I’m sorry to hear you’ve been experiencing these symptoms.

I noticed you also shared your experience in another Leqvio discussion about rising fasting blood sugar. In that post, you mentioned back pain, red spots on your skin, and increased blood sugar after your injections. Thank you for sharing those details in both discussions. They may help other members experiencing similar symptoms connect and learn from one another.

Here’s a link to your earlier comment:
- Connect Discussion: anyone else get rising fasting blood sugar from taking Leqvio shots?
https://connect.mayoclinic.org/comment/1660987/
You mentioned being on your fourth injection in September, and here you describe worsening symptoms following your third injection. Could you clarify how many injections you’ve received and whether the symptoms continued or changed?

Have you had an opportunity to discuss these reactions with your prescribing doctor? Has your doctor been able to help determine what might be related to Leqvio, and have you discussed next steps or other treatment options?

I hope you’ll keep us updated on what you learn. Your experience, including how you and your care team evaluate these symptoms, could be helpful to others considering or receiving this treatment. That includes @dec2022, who originally started this discussion.

@jayscott That sounds horrible or.. I start on Nov 11th. Trembling !

@clj9821, I can understand why reading about someone else’s difficult experience would make you apprehensive about starting Leqvio, especially with your first injection coming up November 11.

I’m curious what conversations you’ve had with your prescribing doctor leading up to this decision. Have you discussed why Leqvio was recommended for you, what side effects to watch for, and what the plan would be if you experienced any?

If I were feeling this uneasy before starting a new medication, I would want to talk through those concerns with my prescribing doctor before the injection. I’d want to feel comfortable that I understood both the potential benefits and risks, as well as what to expect afterward.

Would you be comfortable sharing a little about what led you and your doctor to choose Leqvio?

@19281928, @jlharsh, @dlkreps , @tiburon
Well im here at Mayo waiting for the Doctor but I've seen my numbers and I didn't think they could get that low. Total 89 and LDL 19 all the other look good also. So I'll see what the Doctor has in mind shortly.

@danab those are amazing numbers