Anyone else out there with extremely high lipoprotein (a)?

If I didn’t reply already here I did somewhere else, but I will say it again. I can’t take statins Either so I asked for the LEVQIO. I also can’t do gluten or lactose and I can’t remember if that’s what qualified me for the Le Vecchio but it is awesome. Awesome. Awesome awesome. Dramatically changed my cholesterol and all its components in three months, the LPa might take longer to reverse itself as you get kind of a dump in your bloodstream as it loosens and exits your body on my second or third LP test after starting the LEVQIO I am now changing in a positive direction and lowering my LPa! good luck eat a lot of salmon and little fish in cans!.

Hi! My LPA was 460 nmol/L. Cardiac calcium score was over 750 with the majority being in the LDA Aka widow maker. Family history of fatal MIs, I have 2 cardiac stents now. I was lucky and I did not suffer a MI.
I’m 58 in good health, normal BMI, vegetarian, active… probably the reason I’m still around.
LDL hovers at 70. Though my docs want it at 55. I believe the AHA suggests that as well with LPA.
Sadly I can’t tolerate statins. I take a PCSK 9 inhibitor.
Hopeful for the meds to come out (forgot the trial name) next year.
Keep the faith!

naiviv:

Yes, I take 20mg of Crestor (Rosuvastatin) daily. It works well and has no side effects at all for me. It lowers my LDL from 160 to 70. An LDL of 70 or lower is the level that cardiologists will strive to achieve for people with high LP(a).

My normal A1c, BMI and blood pressure takes a lot of effort with sensible diet and exercise. Those three risk factors are controllable.

I tried high-dose vitamin C years ago along with the Linus Pauling protocol and it had absolutely no effect whatsoever other than diarrhea 😂.

It isn’t old… I agree with you…nothing is ever old with CAD and Lp(a). We women react differently to procedures and medications and have not been included in studies. E.g, They have found that women achieve higher plasma levels of beta blockers from same doses given to men, and women experience 100% more edema from Amlodipine than men. I think they are getting better at including us in the trials now…thanks to Jill Biden and her latest initiative for more clinical trials for women.

I am lucky to have mostly women doctors, but they don’t always know the differences. I do a lot of reading and know when to advocate for myself. That is the best we can do for right now…and watch out for each other on blogs when we can!

Stay healthy! We deserve the best.

I came back to say I didn’t realize this was an old comment and also that I should not have said “relax” because it sounds insensitive. I didn’t mean it that way I meant to be supportive. Sometimes we just need some support in order to help relax not that you should relax Because you shouldn’t be worried in the first place —- as you’re worries are legitimate!

I am sorry for all of your struggles. I am glad you are Ucsd. I think it’s a great place for innovative medicine when you need it my dad had the worst heart in history and swam three times a week. Watched his diet and at 58 he started having heart attack and had three valves that were blocked at 72. He had four valves that were blocked and it’s 80. He had three each time he was told it was the last surgery, he passed away at 80 almost 88 and he went for a lot of stents and the three bypass surgeries. He took statins and lowered his cholesterol to 169 from 396 and he stayed on Staten very well for 25 years vitamin D we’re all vitamin D , I’ve taken this very seriously and by the grace of God we go right? And we try and help others when we can. Reason that I’m posting primarily is because I hate it when I hear that men are being tested and women aren’t. I read a book on how neglected women are in research and testing and it really infuriated me and so women should use the testing that’s done on medicine in medicine for their own purposes And we need to advocate whatever we have left to make sure women aren’t ignored. I’m taking Tim for my bones and the abdominal swelling is notated in men. Do you think men care women care and all the women are commenting that they have abdominal swelling and there’s no recourse for them. There’s no acknowledgment by the pharmacy and by the medical industry , it’s crazy anyway good luck. It sounds like you have it all handled well!

Yes my mother's family all have heart issues at young age. She had a 4 way bypass at 48 and my father had a 5 way bypass at.59. The surgeon that did his surgery said "those weren't arteries, those were bones". He also had hardening of the arteries to the brain, as did his father. I have lost nearly 100 pounds and keeping it off. Excersise regularly and eat a healthy diet. Trying my best not to follow in my parents footsteps!

I have high Lp(a)…family history of premature CAD that I only assumed affected the men in my family. Wrong assumption. I had a NSTEMI at 57 and 2 stents. I am on Repatha, Nexletol and participating in the HORIZON clinical trial for Pelacarsen. After nearly 5 years, I still have angina, but my last heart cath showed that there is some plaque regression.

Having high Lp(a) and LDL felt like having a gun pointing at my head. All is well, but the uncertainty never goes away. I still have four 80-90% occluded septal and diagonal branches of the LAD. I have been told multiple times there is no treatment for these blockages except meds. So, radical acceptance is key, heart healthy diet that you enjoy, exercise and loving life helps.

There are hundreds of research papers out there…I have read most of them. Dr. Tsimikas at UCSD is a great source of information. He gives Niacin to his high risk patients when there is nothing else - it has some risks for the liver so don’t do it on your own. Baby aspirin is helpful and so is lowering LDL. But patience…the results of the trial for Pelacarsen are due to be out next year…so may be available soon. There are several others in trial as well.

I feel your unease…but don’t give up, there are solutions on their way. Life is good. 😊

Hi Sue, RELAX! (I hope that suggestion helps!) it could be an aberration. And there’s a lot to know and a lot for the specialist to learn. I had a high number of 66 and I freaked out but because of the family history of dad and cousins all having heart attacks in their 50s and strokes my doctors cooperated with necessary assessments of my vascular system. Meaning they looked at the walls of my heart arteries for vascular deposits. I had three clear heart arteries and one artery was 1/3 blocked. I am 67. I’ve watched my diet and exercised my whole life because my dad had his first heart attack at 58. I pushed to go on the LEVQIO because I can’t take statins and I’m gluten and lactose intolerant. It’s a twice a year injection and zero side effects. As far as I can tell it dropped my cholesterol 70 points in the first testing period of three months I told all my relations that they had to get tested for the familial CAD, I think some thought I was crazy. Oh well to each his own just because you have a high number on some test does not mean you have the disease and if you have other things that substantiate that you don’t that’s what your doctors are probably look looking at , the LPL a seems to indicate one carries around a familial disease, but I don’t see that it means a direct correlation to manifesting CAD. I hope that helps. Good luck!

Do other family members suffer from cardiovascular disease in your family? Mine experienced heart attacks and strokes in their 50s and died in their 60s so when the LP little test came along, my doctor agreed to do it I was freaked out that my score was 66! They ran a lot of other tests and I found out that three of my arteries are clear and one is 1/3 blocked. I am 67. I’ve always watched because of my father. I’ve exercised and eaten correctly when I became postmenopausal my cholesterol became stubborn. I can’t take statins , but I asked to be started on LEVQIO and it dropped my cholesterol 70 points in three months. My LPa is still sitting at about the same number. I had a fight for the LEVQIO but it was well worth it. There’s zero side effects and you only go a couple times a year for the injection. I got it because I was lactose and gluten intolerant. I highly recommend it if you can get it, in the meantime, there doesn’t seem to be too much to do. I still watch my diet and exercise. Blood test oh and one other thing I take L-Carnitine Regularly as a supplement. Supposedly, I have a deficiency and the acetyl Lcarotene crosses the blood brain barrier. I hope it keeps those plaque deposits from forming in my brain as well! I recommended to the rest of my cousins that they get tested as well!