OT PCSK9 Inhibitors

[pdonk]

As part of my ongoing mystery sickness, I visited a cardiologist today. As with other Dr's, he expressed concern about my cholesterol levels.

His suggestion for treatment was not statin, but injectable PCSK9 inhibitors. The most interesting aspect of this treatment is that it nay be possible to only have 2 or 3 injections per year.

Anyone here on a drug such as leqvio or repatha? What has your experience been like? Side effects?

On a side note, strava is effective when talking to drs and being able to quantify that uou actually excercise and the intensity.

[Plum Hill]

I’ve been told I should go on Repatha. I’m not really into self-injection.
I was told it’s either two self-injections (using an autoinjector) per month or one injection at a doctor’s office once a month.
I have not heard anything about two or three injections per year.

Others on the forum are on Repatha.
Waiting for them to reply.

[Ralph]

I'm on Repatha. Was on Praluent before. Then insurance company changed the formulary and replaced with Repatha. My cardiologist doesn't prefer one over the other. Take the injection every two weeks. No side effects at all for me. Had terrible side effects with statins.

I think the word "injection" is a little misleading. You do use the disposable injector pen, but it's not really painful. Just barely under the skin. I do it on my thigh. Just clean a spot with wipe, and press pin against the skin so nose of pen recedes, and push the injector button on top and needle comes down and barely enters the skin. Usually just leaves a dimple for a bit. Keep the window of pen facing me, so I can see the contents go in, then I count to 5, and pull it away. Usually not a sign of blood. Store it in fridge, until about 30 minutes before use, to let it warm up. Great instructions are in package. Watch your diet, and you can get LDL to around 50. (my cardiologist says some studies show some plaque reversal if you can get LDL to around 50 or lower.

On my Medicare Advantage plan, my drug company is CVS Caremark, and if I have it sent to a CVS pharmacy, they give me the mail order price (needs refrigeration...so can't mail to my home), $40 for 3 months. Other pharmacies $60 for 3 months. Have no idea how other insurance works. There are some newer drugs in this class I believe, but this is the one my United Health plan covers. My cardiologist office works out the approval and Rx is for a year at a time.

[thwart]

Many insurance plans will refuse to approve these expensive medications if you haven't at least given statins a try, unless you have a disqualifying medical condition. They do work well for most people without significant side effects.

When it comes to medications, seems everyone's experience will be different... but the odds are in your favor.

[C40_guy]

Originally Posted by Ralph

I'm on Repatha. Was on Praluent before. Then insurance company changed the formulary and replaced with Repatha. My cardiologist doesn't prefer one over the other. Take the injection every two weeks. No side effects at all for me.

My experience almost exactly mirrors Ralph's No side effects at all for either Praluent or Repatha. Injectors are easy to use, not like giving yourself a traditional injection at all.

And the stuff works. Cut my TC by 50%.

[uber]

Praluent for over one year. Zero issues/side effects

[oldpotatoe]

Originally Posted by C40_guy

My experience almost exactly mirrors Ralph's No side effects at all for either Praluent or Repatha. Injectors are easy to use, not like giving yourself a traditional injection at all.

And the stuff works. Cut my TC by 50%.

Same with wife who could not tolerate any traditional statins..Praluent. I give it to her, twice per month. No issue, no side effects..lowered her very high familial
levels by more than 50%...

[pdonk]

Thanks everyone. I know each case is different, but hearing from real people help.

[flying]

Originally Posted by pdonk

As with other Dr's, he expressed concern about my cholesterol levels.

What kind of levels are you seeing?

It is pretty easy if your inclined to lower lipids number quite a bit
I went from 270 to 176 total cholesterol
180 to 98 LDL
56 to 63 HDL
170-67 Triglycerides

Just with my own dietary changes
My Cardiologist still wants me to start Repatha too because he see's I have some stenosis in Carotid Artery.
He would like to see LDL at 50 or below

I am waiting till my next ultrasound to see if I have also improved carotid
I am leery about a 2 week dose of a drug but that is just me.
Many folks are taking Repatha including Dr. Peter Attia who has made many video about these new drugs on You Tube

If I still have not improved I will ask to try a very low dosage statin like 5mg crestor

Good Luck with your decision

[pdonk]

The drug that is only a few times a year is called leqvio. He said he is seeing 30 to 50% reductions in cholesterol levels on this drug. He also mentioned they are promoting it due to weird regulations and listing policies here in Canada.

I hate injections, which is why the cardiologist suggested it. I'm very nervous of any drug, especially one that lasts so long and has side effects similar to one's I've almost escaped, brain fig, exhaustion and aches are not fun.

[buddybikes]

Statins have anti-inflammatory actions which of course is also concern in cardiac issues.

No idea if the other meds do also

[ariw]

Following this because my experience with statins has been awful, I may need to go back to my pcp and see if he can get me going on one of these.

[deluz]

I have CAD and 6 stents. Over the past 4 years I have tried various drugs to get my LDL down but I could never get it stable. My cardiologist wants it below 55. Initially I tried Rosuvastatin and it worked well initially but then over time my LDL crept up to 100. Then I added ezetimibe and that got my LDL into the 60's.
Most of 2023 I had severe pain in my legs and feet and could not ride hardly at all. I also had an angiogram where my last 2 stents where added, but it did not help the pain. This past year the pain has improved and I don't know why.
In order to get my LDL lower I started on Repatha in addition to the other two drugs. It got my LDL down to 17. So then I tried stopping the ezetimibe and now it is 34 which is well below the 55 target. Repatha on its own did not get my LDL low enough so I still take it with Rosuvastatin. Since I stopped the ezetimibe it seems I am able to tolerate exercise better but I am not sure if that is why. I was also offered Leqvio but declined because of possible long term side effects, I also heard it does not work as well as Repatha. There is really nothing to be afraid of with the injection, it is just a prick, there is no reason to avoid it. I can't tell if I have any side effects from either drug but I am really happy being able to ride 30 miles with some hills and think I will continue to improve. Merck is in trails with a pill form of PCSK9 inhibitor but it won't be available until 2026.