~Naomi~

Promising New Pots Autoimmune Research Study

96 posts in this topic

Lots of excited and hopeful POTSy buzz around this one and had to share here! An article explaining the findings and a link to the study within the article and posted below.

http://www.dysautonomiainternational.org/blog/wordpress/new-evidence-of-autoimmunity-in-pots/

http://jaha.ahajournals.org/content/3/1/e000755.full?sid=2a92ae76-d6fc-491c-9e79-43190d584090

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Thanks for sharing Naomi!!!

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You beat me! Blocking autoantibodies against alpha 1 vasoconstrictor receptors causing elevated norepinephrine release in the face of orthostatic vasoconstriction failure but the increased NE is felt by other receptors fully causing tachycardia and other symptomatic effects of sympathetic excess. Beta 1 receptor activating autoantibodies also implicated.

replication studies on way!

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I know our cardiologist has been watching this closely. Tyler will be first in line for a blood draw. Who's next?

Rachel

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Yay!!! Thanks for posting, Naomi! I am soooo glad they are coming way closer to an answer, and an answer in the right direction! I've been thinking that they have not been studying the right things, and now someone HAS. Finally.

Do y'all think this will open the door to possibly getting IVIG to clear out the autoantibodies?

Does anyone have a clue if any facility is actually testing for this?

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Due to POTS, my brain is slowly losing its ability to comprehend the nitty-gritty aspects of these studies. What I would like to know is, does this mean that our alpha 1 adrenergic receptors are blocked? Or, are they overstimulated?

Second question, so if we take something that is an a1ar antagonist, does that hurt or help? Reason I'm asking is I've been having a lot of adrenaline lately unrelated to my known causes, such as hypoglycemia, etc. My IM doctor prescribed Trazodone, but 1 day of taking it makes me feel awful. I didn't take another dose, but here I am 2 days later and having near-panic attacks for no reason, plus weird symptoms such as excessive saliva and heavy arms with palm sweating(I normally don't palm sweat). From what I understand(which is questionable lately :)) this med is supposed to be somewhat of an antagonist of a1ar. Do we do better on antagonists or agonists under these circumstances?

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Does this go along with the norepinephrine transporter they found a number of years ago?

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Does anyone have a clue if any facility is actually testing for this?

Sue, the testing isn't available now. A second study will be done which will include a lot more POTS patients. Unfortunately, NIH rejected funding so Dysautonomia International is stepping up fundraising efforts to help get this thing done. If there are any important updates that are not posted to DI's main website, I or others will update here for anyone not on Facebook.

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I'll donate for sure. My parents have spent thousands on doctors for me over the past year for very little progress; any potential treatment is worth a bit more.

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So excited, especially for the young ones here!! :) It's already on my Face Book page!!

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Sorry if this is a dumb question, but are they thinking this could be the cause of everyone's POTS, including people who have POTS because of things like EDS?

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I'll put this in perspective and it should answer anyone's questions:

This study if replicated on a large scale which they are planning to do (100+) would mean that POTS is an autoimmune illness very similar to Autoimmune Autonomic Gangliopathy (AAG). The researchers theorize that depending on which autonomic receptors have autoantibodies causing the dysfunction, that will result in the type of symptoms you have. This particular study was too small to make correlations between types of co-existing illnesses and types of autoantibodies. But I am told on the larger study they will be getting a much wide patient group so they can see if for example. EDS POTS people get a certain autoantibodies more than other types. There are a lot of autonomic receptors on both parasympathetic and sympathetic sides. And depending on the autoantibodies to certain receptors may predict which medicines will work best. That is why they theorize not everyone does well on midodrine, mestinon, or beta blockers.

If the larger study has the same results then yes every type of sub type (hyper, low flow, high flow, etc..) or co-existing (eds, mito, mcad, etc..) would be caused by autoimmune disease called POTS. I would think they might even rename it. This is it is replicated this is the biggest break through in pots research ever. Also it opens the possibility of new drugs that could target these receptors to stabilize them.

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Thanks for posting - I'll be watching this with interest. I wonder, though, if these findings only apply to POTS, or also to those of us with related conditions like NMH or NCS? I've had chronic fatigue for years, with increasing OI issues, and it developed into NMH in recent years. I'm supposedly "borderline" POTS-y but the NMH and CFS are my main problems. Hope the research addresses these issues.

I'd be interested in volunteering for future studies - if any of you plugged-in smart cookies hear that they are recruiting, I'd be very grateful if you post info! (I did follow the links in the DI article to register with various networks and will do so.)

Thanks again!

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Targs66 and everyone else, due to some very unfortunate happenings in the past, we included in our forum rules that it is not allowed to post information on how members can participate in medical studies. If you'd like to share info on this please do so via pm!

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Oops - sorry about that! Thanks for letting me know.

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I don't know if this helps Targs, but this is from the discussion portion of the article: "The variable co‐presence of vasodilatory and vasoconstrictive autoantibodies supports a spectrum of autoantibody expression varying from idiopathic OH(2012)–(2012) to POTS, and likely includes patients with inappropriate sinus tachycardia.(2013)"

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Ah - that's interesting. I don't know if I've got the "inappropriate sinus tachycardia" but certainly have OH. I do hope they include other dysautonomias in future studies!

Thanks, Naomi!

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This is so interesting! Very exciting to potentially get some answers in the foreseeable future.

Rich- thanks for your explanation I found it helpful.

If anyone does have info on the larger study, please PM me the details :)

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When I went to Vanderbilt in October, they asked me if I agree if they use my blood for their studies and without hesitation I said yes! but I don't know if they used it for this study.

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They actually did the study on Orthostatic Hypotension first and found similar results. The answer is probably yes it will end up applying to a bunch of autonomic conditions. The most interesting thing is if they keep expanding on it to see correlations between other illness and causes. For example with they find EDS or Sjogren's patients have all the same type of autoantibodies or the same groups or will it be completely random. Then later on is there a genetic predisposition involved like they are finding in other autoimmune conditions.

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It's a great study. Tom Petty said the waiting is the hardest part, and that's how I feel about a study like this. How long until we have a blood test that we can all get for the antibodies? 1 year, 2 years? How long until this leads to widely applied treatments? 3 years, 5 years? The waiting is the hardest part.

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I know, Dave, I want this done YESTERDAY! But at least we finally have something to feel hopeful about.

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If these antibodies are antagonists of the alpha 1 adrenergic receptor then would phenylephrine be a possible treatment? Or do the autoantibodies stop this agonists effect too?

Found a paper on phenylephrine treatment for POTS

http://circ.ahajournals.org/content/106/23/2946.full.pdf

Has anyone tried this? Does it help? I tried a search but didn't find much in discussions other than the odd comment.

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