Elevated Lp(a) levels - does Repatha help?

@jlharsh
What happens when the body no longer tolerates it?

My Dr mentioned “transfusions” but said they are $10,000 a month..so Idk if you was hinting if Repatha didn’t work for me, that we would do that next.

And my Cardiologist didn’t say how often he would be doing labs to check and see how the Repatha is working on me. What is the norm for that?

I have an US of my Carotid Arteries this month & a new CAD & hes doing repeat labs of everything w that goes with LPA & heart…ill do a “follow up” for all of those things in June. So I’m just “assuming” at that appointment he will be ordering new labs to see how the Repatha is working on me.

How does that work, will I know in a 3 month time if it is or isn’t working? Or will it take longer than that for me to know?

And I REALLLLLY appreciate you getting back to me 🙂

@tamig currently or before treatment?

@tamig
Others here may know more. I have no idea how long it takes for Repatha to impact LP(a). I think you should be able to tell if it is helping LDL by four weeks. Your doctor may have thoughts as to timing before/after an injection to test.

It has been over two years since I had an LDL apheresis treatment and yes, it was $10,000 per treatment at that time. I have lost track of drug trials but there may be drugs available specifically for LP(a) by the time you figure out how well Repatha is working. I think you will have medication options. This may be a good question to ask your doctor.

It sounds like you are getting baseline testing done. How are you feeling about injecting yourself with Repatha, and do you have concerns about your testing?

@astohrer Those are my
Labs with just a statin. I have been on a Statin plus 2 other Cholesterol meds for 8 Months & I’ll be doing new labs tomorrow. As I will also be starting my 1st dosage of Repatha tomorrow as well

I've been on Repatha so long that I can't remember my labs on just a statin. I can tell you they didn't lower my numbers near enough. Repatha has done a great job on everything except my Lipoprotein A with no side effects. Good luck on your journey.

@jlharsh @tamig As mentioned above, I went to the Mayo Statin Intolerance Clinic in February. Labs showed my lipo(a) number was 150, twice the normal number of 75.

I had eight Repatha injections starting last August and eventually (not straight away, about three months into it) had terrible side effects; I had been off it roughly three months when I went to Mayo.

The lipo(a) info was new to me; I don't think I had ever been tested for it before. I don't want to say anything that I might have misunderstood that could be wrong. I went back and read Dr. Kopecky's notes before posting here; we didn't talk about Repatha in relation to lipo(a), only the side effects I had. I had a lipid panel at my physical in September, at which point I'd been on Repatha about seven weeks, and my LDL was down but not by much. Dr. Kopecky did say lipo(a) is genetic and not affected by lifestyle, such as diet and exercise; I thought I understood him to say that there was currently no treatment for elevated lipo(a); I would feel terrible if I'm saying something that's wrong, though.

He said that there are two drugs in clinical trials that are expected to be approved by the FDA to lower lipo(a), possibly as soon as May: Pelacarsen and Opalsiran. He pulled up a spreadsheet on his computer and said he was adding me to his list of people to notify, that I was number 328.

I met with my new cardiologist in the city where I live last week and she said the same thing, that they had actually anticipated that those drugs would have been approved already.

I was...alarmed that my lipo(a) number was so elevated, though heart disease runs on both sides of my family, so I guess it's not surprising.

Wishing the best for you.

Not specifically for Lpa because I can't get doctors to follow up on testing. I do have high cholesterol I'm treating with Repatha (and ezetimibe). I can't take statins, so have to use the repatha and it DOES seem to make a big difference! I'm supposed to do it 2x per month. I shot I messed up and it showed a huge difference. Numbers skyrocketed after missing just one dose, so I have to stay on it. It doesn't help with any symptoms though, like the angina and shortness of breath. I've been trying to get doctors to give me answers and treatment for those symptoms for 6 years now with no luck 🙁 I do have a diagnosis of Cardiac Artery Disease and have 2 stents, but they still can't explain or treat most important symptoms. But yes the Repatha helps with cholesterol.

@wgr123
What side effects were you having with the Repatha?

And your correct that nothing much can be done for the Lipoprotein a, it’s genetic.
My LP (a) is over 600, I was told I have so much in my bloodstream, that my number is undetectable-quite alarming, to say the least.

Where do you live, what Mayo Clinic do you go to?

I’ll be starting my 1st dosage of Repatha today!

@tamig
My Dr said last week, there was a clinical trial I would have qualified for, but it closed. He said he would let me know when another opened up.

Do you know how to find when Clinical Trials are open or coming or anything at all regarding them? Haha!

Thank you so much for responding back to me!

@tamig The side effects for me on statins, both Lipitor, then Crestor, and then Repatha were almost-debilitating muscle stiffness. The first time it happened, on 80mg of Lipitor, I could barely walk; if you've ever had a back spasm that brings you to your knees where you can't walk, the effect was the same, except my back hadn't spasmed. I went to an urgent care.

Eventually, I was put on Crestor and three weeks in, the same; I sent a panicked message to my PCP through MyChart. So I was deemed statin-intolerant.

The side effects were the same on Repatha, starting at about the sixth injection. And my back muscles were so tight, that trying to do a cat/cow yoga pose, which is a gentle stretch, made my back spasm. The worst thing for me was how long it took to clear my system.

I am in Louisville; I went to the Rochester hospital. I learned about the statin intolerant clinic here on this site; my PCP filled out the referral. I don't know for sure; I just assumed the statin-intolerant clinic was only in Rochester. I know there's a Mayo Clinic in Jacksonville, FL, and one in Phoenix/Scottsdale.

I felt terrible during the trip and while I was there; apart from that, it was a very nice experience. Aces across the board. There is a subway in Rochester, not for a train, but an underground network that connects the hotels to the hospital; there are shops and restaurants there. I was originally supposed to go in January; it was going to be very cold then, but you actually don't even have to go outside. But I felt so bad in. January I had to cancel and went mid-Feb., after I had been off Repatha for 90 days. But it's all really convenient there, and every employee I came into contact with was helpful, kind, professional.

Your lipo number is something else. I hope you can get it under control.

As you are starting your first dose of Repatha, I'd just say it's important to go into it thinking that it will work. I'm afraid I've told some horror stories here. And people have all kinds of differnt side effects; I see flu-like symptoms mentioned a lot. I didn't even have any injection-site problems, ever; it was super easy. But you will also read that people have amazing success on it; I've read people saying their LDL went to 15. I really wish it had worked for me; I wish statins had, for that matter. But that ship has sailed.

Wishing you much success.