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~Naomi~

Promising New Pots Autoimmune Research Study

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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 wonder if patients who are fairly disabled and don't respond to other therapies could just be tried on autoimmune type medications to see if something helps. I have common autoimmune symptoms that have really knocked me down (fever, sore throat, swollen lymph nodes in armpits/throat) but a cause cannot be identified, so this is what the doctors are going to do with me soon.

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Jackie,

My guess is (based on my personal experience) that although docs might suspect an autoimmune disease, they aren't willing to try much in the way of autoimmune drugs other than maybe prednisone. It's for two reasons. One, most of these drugs are expensive and insurance won't pay for them without proof of an autoimmune disease. And, two, because many of these drugs have serious potential side effects, including increased risk of infection and increased risk of cancers (mainly lymphomas and leukemias), they wouldn't risk it from an ethical or malpractice standpoint. My immunologist sent me to a rheumatologist that he thought might be able to get me on one of these treatments but he wouldn't do it for the lack of evidence although he agreed I definitely have some sort of unexplained inflammatory process going on.

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Katie, you are right. Unless it will show up positive in a test, a doctor will not go down this road with you. Your doctor must be willing to run these test when you are at a very sick point and your symptoms are really flaring. These autoimmune antibodies can be at very high levels when this is happening in the body. Which makes sense about autoimmune to me. I will explain my wierd reasoning and maybe this will make sense to someone else. When my son had his first Cunningham Panel, the testing could not be ruled out as negative or positive for PANDAS/PANS but when he got sick with an infection everything went way out of range on the second test.. So in my head, I'm thinking his body has already accepted these autoimmune antibodies and won't fight them off and when he gets another infection, his cells are not calling out the troops to fight the infection because his cells have accepted these autoimmune antibodies created by infection as a normal thing.

If you can get to an immunologist when you happen to be sick, this is also helpful. Tyler's just happen to be fighting off a sore throat and his white blood count was up when all his immune testing was ran. I was just at the right doctor at the right time with Tyler. The immunologist caught this happening in his blood work and pointed this out to me. I know it's hard to push yourself to go to the doctor when you are at your worst but sometimes this is the only way to get answers. These autoimmune antibodies can be hard to find if your body has already accept them but in a really bad flare, this might be the perfect time to test if you can convience the doctor.

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I hadn't seen this before, it sounds very encouraging and would fit in with my general situation since I've got various immune-related issues myself and others still in my immediate family.

I'm pretty ignorant on biological matters but would the potential treatments be the same as they are for other autoimmune issues? I take Azathioprine (Imuran) and it hasn't had any effect on my POTS symptoms that I've noticed. I was on Prednisone for a few weeks at one stage (pre-POTS diagnosis) and it actually made my symptoms much worse - it's known for causing tachycardia in itself.

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Most autoimmune meds will not protect autonomic system. Either IVIG or Plasma Exchange which are like a blanket autoimmune affect or Rituximab might be used but more studies need to be done. For AAG they don't really have effective treatments yet either

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I was on Prednisone for a few weeks at one stage (pre-POTS diagnosis) and it actually made my symptoms much worse - it's known for causing tachycardia in itself.

That's interesting that you mention that. I had a horrible reaction to prednisone a few months before POTS diagnosis as well. Prednisone is supposed to make you feel wired, hungry, energetic. I experienced the opposite - got very tired and weak after being on it for a few days, experienced resting tachycardia, chills, loss of appetite. When I started vomiting I called the doctor and said I couldn't handle it any more.

It was prescribed for a status migraine and both my primary care doctor and neurologist were stumped at my reaction. (It didn't touch the migraine.) I wonder if it had some weird effect on the ANS.

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xRobin,

You might look up Stevens Johnson's Syndrome regarding your odd reaction to the prednisone. I had the beginning stages of this syndrome from prednisone but lucky realized what was happening very early in the process and stopped the drug while I only had what felt like a severe sunburn and some swelling. Like any reaction, there are varying degrees of it and flu-like symptoms are some of the symptoms even though most things you read about it are focused on the skin reactions because they can become so severe.

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Very, very interesting with the Prednisone!! My Pots came in gradual onset since 2012. But I could handle it (though not knowing at all, what it actually was).

But in March 2013 I recieved a few Infusions of Prednisone (for a sudden conductive hearing loss) - and literally from one day to the other my Pots got into full blow - and didn't actually improve since then...

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Yeah, my heart rate went fully into constant overdrive and I started getting very dizzy with even the slightest activity (although I've probably had POTS for a long time this was the first time I'd experienced such strong and consistent dizziness). A year on and I'm still not sure I've quite got back on an even keel from it (the dizziness is improved but seems here to stay, at least to some degree), though at least it makes a bit more sense with the hindsight of the POTS diagnosis since we seem to be more sensitive to medications than most.

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I find this interesting because I seem to be hypersensitive to anything in the steroid family - I've had bad reactions to Cortef, predisolone, Florinef and even just hydrocortisone applied topically. I also seem to have the same kind of reaction to thyroid medications. It's an awful wired but tired, shaky, super-emotional (on the verge of tears), buzzy, nauseous but hungry feeling. I don't have the skin reactions that others have described, though. No one's been able to explain this - I get the "no, those meds won't cause that" reaction (or worse, the "I'm dealing with a crazy lady here") from most doctors, even though this reaction is incredibly consistent!

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I think we need to keep in mind that Cortisol is a stress hormone and predinosone, hydrocortisone, and all the other names it is sold under are forms of cortisol. When we take these meds, in addition to the other things they do for us, they are putting our bodies, chemically, in to a fight or flight mode and all the physiologic changes that go along with that. I think I was helped so significantly by the prednisone because I have severe immune related inflammatory issues. The reaction I had (Stevens Johnson Syndrome) was different from what most of you are describing. I wonder if the difference in how we react depends on what our underlying causes are for our dysautonomia. I would think that could be a factor.

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So, regarding this promising new research posted in this topic, did they in fact draw blood at the Dysautonomia Int'l conference last weekend?? I was kind of concerned on how they would verify that each donor did in fact have a specific diagnosis(various POTS kinds). I was hoping they found a way to circumvent the specifics and just test blood to see what came up.

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I think we need to keep in mind that Cortisol is a stress hormone and predinosone, hydrocortisone, and all the other names it is sold under are forms of cortisol. When we take these meds, in addition to the other things they do for us, they are putting our bodies, chemically, in to a fight or flight mode and all the physiologic changes that go along with that. I think I was helped so significantly by the prednisone because I have severe immune related inflammatory issues. The reaction I had (Stevens Johnson Syndrome) was different from what most of you are describing. I wonder if the difference in how we react depends on what our underlying causes are for our dysautonomia. I would think that could be a factor.

Yes, you'd think it would be. If I had to guess I'd say that my POTS is probably the hyperadrenergic type (I'd love to know how to find out for sure) which would mean something like Prednisolone is unlikely to go down very well. I was told straight off that it pumped adrenaline into you and stood a good chance of causing anxiety but there didn't seem to be a better alternative at the time, unfortunately.

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Terrier,

There is a set of blood tests that they do to test your stress hormones. Correctly done, they have you lay supine for at least 20 minutes then do the first draw. Then they have you stand for 10 minutes and then do the second draw. A spike in the hormones would indicate hyperandrenergic POTS. Most labe have to get specific instructions to do this properly as they will usually just have you sit in a chair and take blood as usual if not given the specifics by a doctor. I am not near my file right now so I can't give you a list of the hormones. I'll check on it later.

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Katie, it's cortisol and aldosterone levels to test the adrenal glands...I'm on Florinef now, and it's amazing the difference it has made for me!! I believe I'm hyperadrenergenic POTS. My doctor says Pure Autonomic Failure, but I believe there is an Endocrine component here.

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I wonder if patients who are fairly disabled and don't respond to other therapies could just be tried on autoimmune type medications to see if something helps. I have common autoimmune symptoms that have really knocked me down (fever, sore throat, swollen lymph nodes in armpits/throat) but a cause cannot be identified, so this is what the doctors are going to do with me soon.

I just thought I'd update. I am going to an immunologist who is also an internist and rheumatologist (I know - wow). Thanks to a biopsy of my lacrimal glands, we have proof of inflammation that is causing mild scarring. She sees me being bed bound due to a mystery disease (fevers of unknown origin, swollen lymph nodes, severe fatigue) as meriting treatment even though we don't have a name for what is wrong with me. Any risks are outweighed by benefits in her opinion since I am 25 and unable to take care of myself or participate in work or social activities.

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Katy the test you are thinking of is Catecholamine Testing and it tests for supine vs upright Dopamine, Norepinephrine, and Epinephrine. Norepinephrine is the one they most look to identify POTS characterized by a hyperandrenergic state with posture change. Here is info on the test and how it should be done from my experience at Mayo.

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So, regarding this promising new research posted in this topic, did they in fact draw blood at the Dysautonomia Int'l conference last weekend?? I was kind of concerned on how they would verify that each donor did in fact have a specific diagnosis(various POTS kinds). I was hoping they found a way to circumvent the specifics and just test blood to see what came up.

Yes they did, I was there! Very exciting. They had roughly 100-200 people, both "normals" and dysautonomia patients. There were several nurses, Bonnie Black and Dr. Raj were there. I wish I had a picture of the conference room they turned into a clinic... They had about 5 beds set up there to take BP/ HR laying and standing and they did a basic hypermobility screen. 4+ nurses from Oklahoma were drawing blood most of the day Sunday. There was also an online questionnaire everyone had to do after the conference. It will take months to get the results.

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That is all fantastic, and I know we all can't wait to hear back on the results! What a fast-tracked method of doing research!

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Just did some reading and we have alpha adrenergic receptors on our masts cells. They usually inhibit the release of histamine...maybe these autoantibodies are the link to mast cell involvement.

Then I got thinking that if maybe our immune system didn't start by targeting our autonomic systems directly but due to a high mast cell burden (due to Eds, allergies, and/or flu) our bodies made autoantibodies against our mast cells but specifically the adrenergic receptors on these cells. Side effect: more mast cell activation and POTS. Those that have a strong combo of genes to get rid of mast cell mediators have less problems in this area.

totally hypothesising of course...man Id love to sit down with these scientist!

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