High Lp(a) increases speed of AVS progression

[Nocturne]

Just something for those unfortunate people who have AVS due to extremely high Lp(a) levels and end up coming here for support and advice:

https://www.medpagetoday.com/cardio...118&utm_term=NL_Spec_Cardiology_Update_Active

 

[Nocturne]

https://jamanetwork.com/journals/jamacardiology/article-abstract/2715105

Original publication in JAMA.

I just emailed my cardiologist asking if this new evidence could help get me on Repatha, but I already know the answer will be a look of mild irritation and a repeat assertion that the drug is "not indicated" for my case.

 

[tigerlily]

Could you explain what High Lp(a) levels are for someone a little less informed and slower on the uptake perhaps i.e. me. Thank you. I'm concerned because I had a tricuspid valve calcify when I was only 53.

 

[Nocturne]

Could you explain what High Lp(a) levels are for someone a little less informed and slower on the uptake perhaps i.e. me. Thank you. I'm concerned because I had a tricuspid valve calcify when I was only 53.

Absolutely. And yes, a calcified tricuspid valve at age 53 seems like a red flag for high Lp(a) to me. Have you asked your doctor to check your Lp(a) levels yet? It is rare for a doctor to check them unprompted, because historically there has been nothing they can really do to lower them (they are almost entirely determined by genetics). Niacin will lower Lp(a) but for many people even this lowering will leave them well above the threshold of extremely high risk.

Lp(a) stands for Lipoprotein a, which is a type of LDL cholesterol. It is a lot more dangerous than regular LDL, though, and it does not respond to diet, exercise, or even statins. It has been found to be causal for aortic valve calcification and AVS, as well as coronary artery disease. In fact, the variant allele I have two copies of (the variant at LPA rs10455872) is the ONLY allele on the human genome that has been found to be causal for AVS!

There is an excellent Facebook group run by Sandra Revill Tremulis, and I would highly recommend joining us. There are a lot of people there who really understand Lp(a) and what it can do. There is also a medication in the works that CAN lower Lp(a), by over 90%! That is HUGE news for people with high Lp(a) AND their families, because it is genetic (I have two copies of a bad gene that together raise my Lp(a) to 13 times the normal amount, triple the "extremely high risk" threshold).

My tricuspid aortic valve must have calcified prior to my 40s, and I was diagnosed with AVS at 41. When I first came here, the regulars did not understand the connection between high Lp(a) and early calcific AVS and I was told that it must have been my own fault because of lifestyle, and vilified by at least one individual on the grounds that THEIR AVS was due to GENETICS, while MINE was due to poor choices. I have never forgotten this and my heart goes out to people who come here with AVS due to high Lp(a) levels, and do not present with bicuspid valves. This forum is dominated by people with bicuspid valves, and that is fine, but they have a different set of issues, problems, and likely complications than high Lp(a) people, and the ones who do not understand can still make hurtful mistakes and come at us because of their ignorance. It turns out I am not the only one who has had this happen.

My advice - get your Lp(a) tested, and if it is high, go to Sandra's facebook forum, the Lipoprotein a Foundation.

Also, check this out:

https://www.youtube.com/watch?v=u6ed3DNRdkU

I have met Tiffany on the Facebook group, she is a lovely person.

 

[Sharon K]

Interesting...thanks for the info Nocturne.

Do you think it's possible for someone with a BAV to also have this? My AVA reading has gone from 1.6cm to 1.1cm in just under a year....this seems very fast to me.

 

[Nocturne]

Yes, and high Lp(a) typically accellerates the progression of AVS. I’d get it checked.

 

[Sharon K]

Yes, and high Lp(a) typically accellerates the progression of AVS. I’d get it checked.

probably a good idea.......thanks again for the info Nocturne

 

[newarrior]

I am not a bicuspid person either.. I have CAS and high Lp(a) and low HDL which probably were two of the major causual factors in CAS.

 

[Astro]

Lp(a) appears to be an important marker for valve degeneration whether it is the aortic or mitral valve and whether tricuspid or bicuspid. What is not clear to me is whether high lp(a) causes faster valve degeneration or whether the presence of a quickly degenerating valve causes a raised lp(a)?

It will be an interesting topic to follow. Eventually treatments for lp(a) will appear. There is potential for it to slow the degeneration of valves. However, people thought that Statins would slow the progression of valves but the trials showed no difference.

 

[newarrior]

Lp(a) appears to be an important marker for valve degeneration whether it is the aortic or mitral valve and whether tricuspid or bicuspid. What is not clear to me is whether high lp(a) causes faster valve degeneration or whether the presence of a quickly degenerating valve causes a raised lp(a)?

It will be an interesting topic to follow. Eventually treatments for lp(a) will appear. There is potential for it to slow the degeneration of valves. However, people thought that Statins would slow the progression of valves but the trials showed no difference.

Well stated--let's hope for ways to lower Lp(a) and slow down or reverse/cure aortic stenosis

 

[le19555]

Lp(a) appears to be an important marker for valve degeneration whether it is the aortic or mitral valve and whether tricuspid or bicuspid. What is not clear to me is whether high lp(a) causes faster valve degeneration or whether the presence of a quickly degenerating valve causes a raised lp(a)?

It will be an interesting topic to follow. Eventually treatments for lp(a) will appear. There is potential for it to slow the degeneration of valves. However, people thought that Statins would slow the progression of valves but the trials showed no difference.

Anyone seen the studies on the affect of high HDL reversing aortic stenosis? There is one involving mice from 2013 then one from 2020 on rabbits and a recent NIH one that claims the same thing may be possible in humans. I have the links.

 

[cldlhd]

Absolutely. And yes, a calcified tricuspid valve at age 53 seems like a red flag for high Lp(a) to me. Have you asked your doctor to check your Lp(a) levels yet? It is rare for a doctor to check them unprompted, because historically there has been nothing they can really do to lower them (they are almost entirely determined by genetics). Niacin will lower Lp(a) but for many people even this lowering will leave them well above the threshold of extremely high risk.

Lp(a) stands for Lipoprotein a, which is a type of LDL cholesterol. It is a lot more dangerous than regular LDL, though, and it does not respond to diet, exercise, or even statins. It has been found to be causal for aortic valve calcification and AVS, as well as coronary artery disease. In fact, the variant allele I have two copies of (the variant at LPA rs10455872) is the ONLY allele on the human genome that has been found to be causal for AVS!

There is an excellent Facebook group run by Sandra Revill Tremulis, and I would highly recommend joining us. There are a lot of people there who really understand Lp(a) and what it can do. There is also a medication in the works that CAN lower Lp(a), by over 90%! That is HUGE news for people with high Lp(a) AND their families, because it is genetic (I have two copies of a bad gene that together raise my Lp(a) to 13 times the normal amount, triple the "extremely high risk" threshold).

My tricuspid aortic valve must have calcified prior to my 40s, and I was diagnosed with AVS at 41. When I first came here, the regulars did not understand the connection between high Lp(a) and early calcific AVS and I was told that it must have been my own fault because of lifestyle, and vilified by at least one individual on the grounds that THEIR AVS was due to GENETICS, while MINE was due to poor choices. I have never forgotten this and my heart goes out to people who come here with AVS due to high Lp(a) levels, and do not present with bicuspid valves. This forum is dominated by people with bicuspid valves, and that is fine, but they have a different set of issues, problems, and likely complications than high Lp(a) people, and the ones who do not understand can still make hurtful mistakes and come at us because of their ignorance. It turns out I am not the only one who has had this happen.

My advice - get your Lp(a) tested, and if it is high, go to Sandra's facebook forum, the Lipoprotein a Foundation.

Also, check this out:



I have met Tiffany on the Facebook group, she is a lovely person.

Thanks for the info. I wasn't aware that it was a specific subset of LDL that didn't respond to traditional methods. My cholesterol and lipids were never high but they were borderline high once or twice so my cardiologist put me on pravastatin and now it's pretty low but I'm not sure about this specific type of LDL. Although I had my BAV repaired 6 years ago when I was 45 and there was no calcification at that point so maybe I'm good? But on the negative side my CT angio scan did show a little bit of calcification in my one coronary artery but it was within the arterial wall because the cardiac cath showed no blockages, but then again that was 7 years ago when I had the cath.....

 

[le19555]

How about three studies on reversal of aortic calcification through significantly raising HDL levels? I have links.

 

[Chuck C]

How about three studies on reversal of aortic calcification through significantly raising HDL levels? I have links.

Could you please share your links? If you have published literature about how to reverse aortic stenosis, I'm sure a few people here would love to read about it. Forgive me if I'm more than a little skeptical that somehow this evidence has evaded us all and all of medicine. But, love to see whatever you have.

With a mean pressure gradient of 86, are you looking for ways to reverse your aortic stenosis, rather than get surgery? Anyway, getting a second echo is of extreme importance given the discordance between your gradient and valve area in your last echo.

 

[le19555]

Could you please share your links? If you have published literature about how to reverse aortic stenosis, I'm sure a few people here would love to read about it. Forgive me if I'm more than a little skeptical that somehow this evidence has evaded us all and all of medicine. But, love to see whatever you have.

With a mean pressure gradient of 86, are you looking for ways to reverse your aortic stenosis, rather than get surgery? Anyway, getting a second echo is of extreme importance given the discordance between your gradient and valve area in your last echo.


[/https://www.sciencedaily.com/releases/2013/07/130718101242.htm


https://www.researchgate.net/public...y_ApoA-I_mimetic_peptide_infusions_in_rabbits
https://pubmed.ncbi.nlm.nih.gov/21917259/

Note- These links took Months of researching to stumble upon the right keywords that pulled up these studies. Regarding my echo, I am having a consult with a reputable surgeon today and will ask for a new echo. Let me also note that HDL is raised with a keto diet, exercise and vitamin B, niacin. I have been involved in all three since April when that echo was performed. Weight loss - 26 lbs.

I am not insinuating that these studies mean valve replacement is not the right option for me or anyone else. I am merely sharing the information.

 

[newarrior]

I've tried to raise my HP all four years using fish oil exercise and other things nothing worked. I'd be curious to see any studies that back up how to raise HDL in connecting hdl and aortic stenosis. I've always had low levels of HDL even in my twenties

 

[Chuck C]

Interesting. Thanks for the links.
That is pretty thin evidence at this point. There may be some hope there for the future, but right now there is no HDL treatment for aortic stenosis for humans that is approved. While higher HDL is associated with better cardio vascular health, studies using pharmaceuticals to raise HDL, thus far, have proven to have no health benefit.

"Conclusion
Increasing HDL levels via pharmacological manipulation beyond optimal lipid lowering therapy for secondary prevention is not beneficial."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3984171/
If you want to raise your HDL naturally, that could be a benefit to your health in general. One of the best ways is to increase your amount of exercise to raise your HDL. Which, we all should be doing anyway, regardless of whether we have aortic stenosis. Although, with severe AS, make sure to get you doctor's approval first- he may not want you to do more than brisk walking, but this is actually still very beneficial.

Here is info from the Mayo Clinic on ways to raise your HDL. Some may find it surprising that moderate drinking raises HDL. Some have speculated that this is why moderate drinking has correlated with lower cardio vascular events, in many studies.

https://www.mayoclinic.org/diseases...esterol/in-depth/hdl-cholesterol/art-20046388
Ultimately, raising your HDL could benefit your health in general, as it is correlated with lower cardio vascular events. But, I see nothing there to bank on in terms of reversing aortic stenosis, at least not at this time, and, certainly, not an alternative to surgery when one has symptomatic severe aortic stenosis.

 

[cldlhd]

I confess to being one of those people who really want to the doctor when I was younger and by younger I meet up until I hit around 40ish... So I don't have a real accurate record of My cholesterol going way back but I have a few years of data. My HDL did jump up a good bit starting around the time I was diagnosed with my BAV but a few things happened at that point- I was put on 40mg of pravastatin a day and although I wasn't a total slacker before I did increase my exercise amount and improved my diet ( that wasn't real bad either) . I guess a certain amount of adjustability or improvement is probably down to genetics.

 

[cldlhd]

Interesting. Thanks for the links.
That is pretty thin evidence at this point. There may be some hope there for the future, but right now there is no HDL treatment for aortic stenosis for humans that is approved. While higher HDL is associated with better cardio vascular health, studies using pharmaceuticals to raise HDL, thus far, have proven to have no health benefit.

"Conclusion
Increasing HDL levels via pharmacological manipulation beyond optimal lipid lowering therapy for secondary prevention is not beneficial."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3984171/
If you want to raise your HDL naturally, that could be a benefit to your health in general. One of the best ways is to increase your amount of exercise to raise your HDL. Which, we all should be doing anyway, regardless of whether we have aortic stenosis. Although, with severe AS, make sure to get you doctor's approval first- he may not want you to do more than brisk walking, but this is actually still very beneficial.

Here is info from the Mayo Clinic on ways to raise your HDL. Some may find it surprising that moderate drinking raises HDL. Some have speculated that this is why moderate drinking has correlated with lower cardio vascular events, in many studies.

https://www.mayoclinic.org/diseases...esterol/in-depth/hdl-cholesterol/art-20046388
Ultimately, raising your HDL could benefit your health in general, as it is correlated with lower cardio vascular events. But, I see nothing there to bank on in terms of reversing aortic stenosis, at least not at this time, and, certainly, not an alternative to surgery when one has symptomatic severe aortic stenosis.

Thanks for the links, I read most of that first one but I have to get the dog out for his walk or he'll yell at me.... Once he starts stretching and looking at me I only got about 5 minutes. It seems to be conflicting and a little depressing on one hand but I guess from what I read moderate alcohol consumption is helpful so that's a plus.... I don't really hit the weights like I used to when I was younger but I definitely think there is a benefit to a good brisk Walk everyday, I try to do at least 3 miles usually with my wife, and we also usually do more casual walks with the dog. Combined with that I throw in some bike riding usually but I would like to pick up my exercise regime

 

[cldlhd]

That's my HDL over the last few years so it did increase a decent bit, my LDL is 79 as of my last test but my triglyceride jumped up for some reason up to the high end and normal.