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~Naomi~

Promising New Pots Autoimmune Research Study

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The study is set to expire at the end of the month. Mean it will be completed then. Anyones guess how long it will take to turn around that data into something they can publish in a journal. That's when we will get results. Meanwhile it's promising that Dr. Kem is stating that he is already working on a cure. A little shocking too.

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That's great news!! :)

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I'm very surprised at how bold Dr. Kem was in that interview. Last year when one of the local OK news stations did a piece on the study, a reporter said that they hoped to find a cure within a year. I just kind of laughed it off as a reporter being a little overzealous and misinformed. Obviously, a cure within a year was not going to happen. But I can't stop thinking about Dr. Kem's latest remarks about working on a decoy protein to short circuit the antibodies. Could he really have found what causes POTS, and is it possible that this decoy protein could be the answer? I don't want to let myself believe that it's possible, because I don't want to be devastated if it turns out to be nothing. I know that we just have to be patient, and wait for the results of the study to be published. But I'd love to know what everyone else thought about Dr. Kem's interview??

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Personally, I thought he overstepped in that comment. He may be very optimistic about his proposed treatment. However, to be a "cure" it has to completely stop the disease, not just cause remission in a few people, which is what most drugs treating autoimmunity do. In fact, I don't know of a single cure for any autoimmune disease. And I think that it's unlikely that one drug could "cure" POTS across the board, or even in all autoimmune forms. I am very excited for any progress this team is making. However, that sort of comment is inappropriate until results have been produced and replicated in the full round of clinical trials. Even then I would wait for real life to see what the results are in the actual population.

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I'm excited to see the outcome of this study. But I can't see how it is going to 'cure' PoTS for everyone. After all he's only looking at two antibodies and they are not the only kind of antibodies that have been found in people with PoTS. And what about other underlying factors? I don't know, it just seems incredible that he's talking about a 'cure', of course I want it a LOT but I guess we'll have to wait and see the outcome.

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I think he can't be even close to a cure. What that comment means to me is that the current study is proving that a high % of the 100+ samples were proving to be autoantibodies so that is why he is thinking to even create a "cure." I agree that there is virtually no autoimmune illness that was ever cured, only some have been knocked into a type of remission. Guillane Barre though which is immune mediate peripheral neuropathy has been "cured" for some people. Some GB people have residual illness still and some go onto a chronic form called CIDP. So a "cure" no way, but I am very hopeful this will prove it's autoimmune or immune mediated.

Ultimately I also believe that the autonomic nerve is affected at different parts and different branches, especially the Vagal nerve branch... So I doubt a one size fits all solution will be found. But I do think IVIG may be able to help about 10% of POTS patients no matter which part of the nerve is affected.. Only 10% because only around 30% of AAG and CIDP patients are helped but IVIG

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Yes i think the word 'cure' is a jump. More effective treatment that worked for most people reliably and that was not utterly expensive would be a good start

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When you say a medication that would make POTS go into remission, do you mean like just a drug one takes every day? Do symptoms of autoimmune diseases that have been "cured" still come back while people are medicated? I'd be totally fine with taking a pill every day if that's what was needed to block the autoantibodies. Is that how autoimmune drugs work?

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Some people do go into remission with autoimmune drugs. Most have to stay on the drugs, although sometimes at a reduced dose. Very few, if caught early enough, may be able to go off the drugs after a remission and maintain the remission. This info is based on my reading about RA in particular, so I know very little about remission in other diseases.

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So I'm starting to read more about the immune system and autoimmunity but I don't see why IVIG would help for AI. I see why it aids immunity to external pathogens, but that's not the problem.

This NEJM article summary from 2012 says:

"The author reviews the many proposed mechanisms by which intravenous immune globulin may exert its antiinflammatory and autoimmunity-inhibiting clinical effects. No single mechanism can explain its activity in diseases with diverse pathophysiological pathways."

http://www.nejm.org/doi/full/10.1056/NEJMra1009433 - subscription required; I couldn't read it all.

Wikipedia offers some hypotheses: http://en.wikipedia.org/wiki/Intravenous_immunoglobulin - method of action.

So they don't really know how it helps AI and it's ludicrously expensive. *sigh* Let's try Plan B.

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If anyone is interested in going to the Dysautonomia International Convention in Washington DC from July 17-20th, It's $200 until June the 1st, then $250 there after to attend. I'm going, my sister lives there, so I have more than one reason for going. I've met two other people that are going on line, that I will finally meet in person. I'm very excited about it, since medical research is what I do as a retired RN. I hope some of you will go as well!!

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Ivig works for many autoimmune illness and some like. Guillaine Barre and CIDP have autonomic dysfunction just like us and ivig helps to resolve it. It doesn't work for 100% of patients and most likely will only end up working for 15-30% of autoimmune dysautonomia. Regarding cost, you don't pay for it insurance companies do or govt insurance does in countries with free health care. Just because science has pnt a grasp on the mechanism isnt a reason to pass on a treatment that works. If that were the case hardly any treatment would be used because 90% of treatment mechanisms are guesses...

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An extension of this theory:

In most conditions where autoantibodies are found that specifically bloke or bind to receptors such as in Thyroid disease and M.gravis, where there are blocking there is also often binding in a spectrum that varies from patient to patient.

What this may mean potentially is that there may be a spectrum - some with only blocking and resulting vasoconstriction failure right through as a spectrum to patients where alpha 1 agonising or activating autoantibodies may be present (hypertensive responses or hyper presentations).

And more interesting some may have prominent beta 1 activating autoantibodies (massive tachycardia) right through to potentially blocking beta 1 receptor autoantibodies that suppress tachycardia and cause a state of POTS without actual diagnostic tachycardia!

Crazy!

And ofcourse these autoantibodies may change over time, meaning that a patient miight be hyper in one period and almost hypotensive at another time.

The possibilities are quite daunting.

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Bellgirl I'm going again. I haven't heard anything about results from last year. Rich yeah you're right. If IVIG is really a cure, great. But it's just frustrating to see the amount of guessing in medicine. It's still expensive no matter who pays. Insurance and governments increase the total cost through profit and administrative costs, but lower the individual burden. Rama- wow yeah lots of possibilities.

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I haven't been well enough until now to last through a whole conference before this, Jesse, so I'm excited to attend for the first time! Hope to meet you there!! :)

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I found a bit of an update on the dysautonomia international facebook page:

"Progress on POTS antibody research! Researchers from the University of Oklahoma collaborated with researchers from the Imperial College of London and Lund University in Sweden to look for adrenergic receptor antibodies in a group of of Swedish POTS patients, healthy individuals and individuals who had vasovagal syncope without POTS. The results were presented during last weekend's European Society of Cardiology meeting in London, which is the largest cardiology meeting in the world. We have to wait for the full paper to publish for complete details, but in summary, the researchers confirmed prior findings that serum from POTS patients contains antibodies that inhibit the function of alpha1 receptors and antibodies that stimulate the beta1 receptors. Alpha1 receptors are responsible for constricting blood vessels, so inhibitory alpha1 receptor antibodies can cause too much vasodilation, or not enough constriction in response to standing. Beta1 receptors are involved in setting the heart rate, and POTS patients with higher heart rates on standing had higher levels of the beta1 antibodies. Healthy controls and patients who had vasovagal syncope (also known as neurocardiogenic syncope) without POTS did not have these antibodies. It is likely that different POTS patients have different levels of these antibodies, and it is possible that other antibodies may play a role in POTS as well. Most known autoimmune conditions, like rheumatoid arthritis or Sjogren's syndrome, are associated with dozens of different antibodies. POTS has historically been considered a very heterogenous condition, so it's possible that not everyone has an autoimmune form of POTS. We look forward to additional research on this topic, which represents a whole new way of thinking about POTS, and opens up the door for potential new treatment options once more is understood about these antibodies and how to treat them in POTS."

This looks very interesting. I'm not sure if it's the same antibodies they were looking at but it looks like something similar.

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