Isn't that FUNNY?

[Guest]

This right here:

https://clinicaltrials.gov/ct2/show/NCT02109614

I can all but guarantee you this pans out in the long run and become standard protocol JUST after it's too damn late for it to do me any good.

Because that would be FUNNY. Right? HILARIOUS, even! Ha ha HA!

Get the JOKE?!?

 

[epstns]

While this does look interesting, it appears that they are limiting their cohort to only patients having normally-formed aortic valves. Many of us who have had AVR have needed the replacement due to failure of a native bicuspid (or unicuspid) aortic valve. The study criteria exclude this population, with no apparent explanation. Are they saying that the niacin is only of value if the patient has a normally-formed valve but if the patient has a bicuspid valve, they are at higher risk for replacement anyway? This would only be conjecture, though, as only a portion of bicuspid valve patients ever need replacement.

No matter the intent, the study is WAY too late for me. Keep your sense of humor, though. It keeps people wondering what you're really thinking. . . ;-)

 

[Nocturne]

I'm the OP. Just frustrating to be looking at potential treatments through a thick glass, unable to actually reach them. Seems like we're RIGHT on the cusp of being able to do some serious good for people like myself -- but aw, not QUITE soon enough.

I think what they are trying to do is isolate the effects of high Lp(a) as much as they can, so they don't want bicuspid valve issues interfering with the study. That's not to say that high Lp(a) doesn't figure in to AVS in someone with a bicuspid valve -- it probably compounds the problem -- it's just that they wanted to keep the study simple.

I had not noticed that they were just using niacin. I had assumed they were using the new antisense drug, or PSCK9 inhibitors, but I guess those are still experimental/expensive.

OR, maybe there's an insurance company funding this research that wants to make sure they have a study that shows that lowering Lp(a) will NOT help with AVS outcomes, before expensive methods of doing just that become available and known to the public. There's a conspiracy theory for you. We know from the NEJM presentation I recently posted that this idea has been around for at least a few years.

In any event, if lowering Lp(a) really does help (and it seems like it should), then it would probably be a good preventative strategy for anyone born with bicuspid valve, as well as anyone with my particular genetic oddity. So this matters to all of us.

 

[Protimenow]

It's probably late for most of us reading this. Niacin has its own problems, if it isn't released slowly. Skin flushing and other reactions can take place - but, of course, the dosing regimen can be adjusted for better tolerance.

One thing that somewhat concerns me is that those who are identified as being predisposed to the problem, and who will be prophylactically taking Niacin for the rest of their lives, is the feeling that there's a cloud over them. They may go through life fearing that missing a dose or two can give them Aortic Stenosis. In extreme cases, with the fear of Aortic Stenosis weighing heavily on them, some may even get unscrupulous physicians to replace their valves pre-emptively, just to avoid ever getting aortic stenosis. (This is kind of like getting a double mastectomy because you carry a gene that was linked to breast cancer).

IF all those carrying that particular gene DO go on to develop Aortic Stenosis, there would be a strong reason to take the medication to help stave it off. If it's only a weak association, there may not be as strong a reason to begin a lifelong regimen of prophylactically take Niacin.

And, with drug companies continuing as they currently are, they'll add an antacid or special time release component to this vitamin that costs pennies a pill, put it through clinical testing, and justify charging $30 a pill for it.

(I've recently run across other examples of this practice by the drug companies: In one case, a company mixed an antihistamine with a corticosteroid, and sold it as an inhaled medication for sinus sufferers. The stuff costs about $200 per inhaler. Separate the ingredients, and it's about $30 or so for both. Another one is a new medication that delivers Diosmin (also quite inexpensive) with some kind of buffering material. They don't even call it a drug - it's a medical food. They charge about $25 a pill for this one - and it probably costs pennies to make. I know that I'm somewhat off topic here, and it's good to see research into Aortic Stenosis, but I kind of wonder about what this 'knowledge' will do to a person, if the risk factors haven't been well verified)

 

[Nocturne]

Not everyone who carries the rs104-and-change G variant allele develops CAVS, but they do have about triple the normal chance of doing so, or quintuple the normal chance if they happen to be lucky enough to be homozygous.

I can see the concern, but honestly what would be served by NOT telling these people (people like me)? It would be like purposefully keeping someone in the dark about having diabetes because you didn't want them to be worried or taken advantage of by unscrupulous snake oil peddlers and insurance companies. Meanwhile you are denying them the opportunity to act based on knowledge of the real danger they are in when it comes to CAVS and other forms of CVD.

Since I am one of these people, I can tell you that I wish I had known when I was younger and could have done more about it. And I think that someone who would deliberately keep that information from me "for my own protection" would be a horrid human being.

 

[Nocturne]

Not everyone who carries the rs104-and-change G variant allele develops CAVS, but they do have about triple the normal chance of doing so, or quintuple the normal chance if they happen to be lucky enough to be homozygous.

I can see the concern, but honestly what would be served by NOT telling these people (people like me)? It would be like purposefully keeping someone in the dark about having diabetes because you didn't want them to be worried or taken advantage of by unscrupulous snake oil peddlers and insurance companies. Meanwhile you are denying them the opportunity to act based on knowledge of the real danger they are in when it comes to CAVS and other forms of CVD.

Since I am one of these people, I can tell you that I wish I had known when I was younger and could have done more about it. And I think that someone who would deliberately keep that information from me "for my own protection" would be a horrid human being.

 

[cldlhd]

I agree, they're probably excluding BAV to make the study "cleaner" but if it's effective for 'normal' valves I would imagine it likely it would have the same effect with BAV's.

 

[Nocturne]

That's my thought as well. Of course it will take a decade or so to hash out exactly how it works to the point where the insurance companies can no longer have plausible deniability, and by that point it'll be too late for me. But I'll get to
tell me doc "I told ya so", which I guess is worth maybe a decade or two of life, eh? Sure it is. Sure.