Anyone else out there with extremely high lipoprotein (a)?
Hi! I just found out that I have an extremely high lipoprotein (a) of 515 nmol/L. I'm terrified; it's that high. I'm 58 years old and my total cholesterol is 212. My LDL is 141, and my HDL is just 40. My cholesterol/HDL ratio is 5.3. Of course it's a long weekend and I may not be able to reach my doctor tomorrow. I have watched a couple of informational sessions online from various doctors discussing elevated LP(a), but no one mentions anything close to how high mine is. Is there anyone else out there with severely elevated Lp(a)? Thanking you in advance. Sue M.
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Mine is 329.1 Susan. You can read what happened to me in an earlier message. I am going to get in a study for Eli Lilly. I am hoping I don't get the placebo. It is for the drup Lepodisirin. So far it can bring lipoproteinA down 94%. Search for the studies online. I feel for me that is the best thing to do.
Yes, but occasionally I have a piece of cake/pie on birthdays and holidays.
Are you still on a Vegan diet?
yes: between August before I started with the add-on Repatha (started in October) and my last blood test in February, my Lp(a) dropped 43%, now down to 82.
If it makes you feel any better, my test came back >600, so I don’t even know how high it is. It’s my understanding that we’re still a year away from a drug that specifically targets Lp(a)
For the first 2 injections we paid $500, for the next 4 it would be $700 ( doctor wasn’t very helpful in helping us to find a way that Medicare would pay) second we want to make sure that the high LPA isn’t a side effect from Repatha, he never before had it it so high.
After stopping Statins, it already dropped very quick.
So we will find out if it drops further on ( side effect) or Repatha worked,
In the last case, we will use Repatha again, we have a alternative cardiologist at home in Alaska.
Found this dated 10/23.
Novel Pharmacological Therapies for the Management of Hyperlipoproteinemia(a)
Abstract
Lipoprotein(a) [Lp(a)] is a well-established risk factor for cardiovascular disease, predisposing to major cardiovascular events, including coronary heart disease, stroke, aortic valve calcification and abdominal aortic aneurysm. Lp(a) is differentiated from other lipoprotein molecules through apolipoprotein(a), which possesses atherogenic and antithrombolytic properties attributed to its structure. Lp(a) levels are mostly genetically predetermined and influenced by the size of LPA gene variants, with smaller isoforms resulting in a greater synthesis rate of apo(a) and, ultimately, elevated Lp(a) levels. As a result, serum Lp(a) levels may highly vary from extremely low to extremely high. Hyperlipoproteinemia(a) is defined as Lp(a) levels > 30 mg/dL in the US and >50 mg/dL in Europe. Because of its association with CVD, Lp(a) levels should be measured at least once a lifetime in adults. The ultimate goal is to identify individuals with increased risk of CVD and intervene accordingly. Traditional pharmacological interventions like niacin, statins, ezetimibe, aspirin, PCSK-9 inhibitors, mipomersen, estrogens and CETP inhibitors have not yet yielded satisfactory results. The mean Lp(a) reduction, if any, is barely 50% for all agents, with statins increasing Lp(a) levels, whereas a reduction of 80-90% appears to be required to achieve a significant decrease in major cardiovascular events. Novel RNA-interfering agents that specifically target hepatocytes are aimed in this direction. Pelacarsen is an antisense oligonucleotide, while olpasiran, LY3819469 and SLN360 are small interfering RNAs, all conjugated with a N-acetylgalactosamine molecule. Their ultimate objective is to genetically silence LPA, reduce apo(a) production and lower serum Lp(a) levels. Evidence thus so far demonstrates that monthly subcutaneous administration of a single dose yields optimal results with persisting substantial reductions in Lp(a) levels, potentially enhancing CVD risk reduction. The Lp(a) reduction achieved with novel RNA agents may exceed 95%. The results of ongoing and future clinical trials are eagerly anticipated, and it is hoped that guidelines for the tailored management of Lp(a) levels with these novel agents may not be far off.
Why did he pass on Rapatha?
Weird you mentioned fingers. I noticed the same -on my left hand there is not as rapid a response to like finger tapping etc. Ugh.
You are right,
Statins can have the side effect to higher LPA dramatically.
My husband is off the statins now since a few weeks, decided to pass on Repatha, after 2 shots, to see how his lab turns out in a few weeks.
We will keep you updated.