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Does Pots Severity Justify Immunosuppression?


jangle
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I'm currently going to try florinef again this time just taking it 3 days of the week.

But I was talking with my new neurologist who's experienced with POTS patients. She said that she would consider immunosuppression if my bloodwork comes back

positive and the specialists advise immunosuppression, but that she feels the side effects of immunosuppression can outweigh the severity of POTS.

I'm not familiar with immunosuppressant drugs, so I don't know the severity of their side effects. I think for some immuno-modulators like IVIG, the side effects can be short lived and not too intense, but they can certainly vary. Of course if one gets an infection that could have serious complications.

I guess any kind of discussion like this would have to accurately measure side effect vs symptoms without treatment.

But basically what I took from the conversation is that POTS may very well be an autoimmune disorder, but that doesn't necessarily mean they'll treat the autoimmunity.

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Is this the new neuro that you were kinda doubting would be familiar with POTS, but turns out she is? That's good if that's the case. I'm not clear on what you're saying... if the bloodwork comes back positive for what? And what kind of immunosupression is she talking about... like Prednisone or something?

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Is this the new neuro that you were kinda doubting would be familiar with POTS, but turns out she is? That's good if that's the case. I'm not clear on what you're saying... if the bloodwork comes back positive for what? And what kind of immunosupression is she talking about... like Prednisone or something?

Yes actually this doctor is well versed in POTS, she's read many of the studies and seen quite a lot of patients so I'm pleasantly surprised. The bloodwork we were talking about would be the mayo clinic heart autoantibodies as well as the alpha/beta receptor antibodies and achr antiganglionic antibodies associated with POTS. The type of immunosuppression was IVIG/steroids.

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The bloodwork we were talking about would be the mayo clinic heart autoantibodies as well as the alpha/beta receptor antibodies and achr antiganglionic antibodies associated with POTS. The type of immunosuppression was IVIG/steroids.

Wait, was this a hypothetical conversation? Or you had this bloodwork done? Is Mayo able to test the heart autoantibodies presently? For me, if any of this stuff came back positive I would jump on treatment, IVIG or whatever they had to offer. My functioning is so limited by the severity of my POTS, it would be a risk I would take.

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I echo all the questions Naomi had. Plus, what exactly are the alpha/beta receptor antibodies? Is that part of the new Mayo cardiac antibodies that you mentioned?

And, I feel the same as Naomi. If I had just one positive antibody, I would jump all over the treatment! Living like I live with POTS is no life at all. I know it could be worse, but I am missing out on soooo much in life.

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You may want to PM some of the people on the forum who have tried this therapy. It seems like people get it when they are very sick and/or rapidly declining, likely with other conditions in addition to POTS. It seems to have helped some, and given others severe reactions. Would be interested to see what your dr recommends.

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Okay, I can answer this one. I have so many antibodies coming back positive and not one of the 4 doctors that I'm in regular contact - seem to be doing anything about any of it. Unless, you want to count the GastroCrom in there ---cause it is supposed to help modify the immune system. So, not sure if that's the game plan for the moment . . .but, despite my persistance - not getting any other answer on it at the moment. And I do think I have some pretty good doctors trying to help. So, thinking that they think agressive autoimmune treatment isn't the way they want to go with me ---right this minute. . So, this may be the key . . .just not sure yet.

Issie

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Yes actually this doctor is well versed in POTS, she's read many of the studies and seen quite a lot of patients so I'm pleasantly surprised. The bloodwork we were talking about would be the mayo clinic heart autoantibodies as well as the alpha/beta receptor antibodies and achr antiganglionic antibodies associated with POTS. The type of immunosuppression was IVIG/steroids.

It would be greatly appreciated if you could pinpoint these specific bloodwork panels by name or other identification so that they can be more easily identified. I poked around the Mayo Labs website and I think I found the heart autoantibody panel, but I did not see any alpha/beta receptor tests. I know this was something new they were doing at Vanderbilt - is Mayo doing these tests now too? Given my almost total lack of treatment progress over the past year, I'm tempted to seek out an Immunologist or another involved POTS specialist to get more effective treatment.

The 5 days I spent on small doses of Dexamethasone tells me there has to be a better answer out there. I went from sitting around to spending 12 hours doing an engine teardown and tuneup. Tells me there is something there worth exploring further even if some of the doctors don't think so.

The really interesting thing I was also told is that certain autoimmune disorders, like Lupus, are treated with steroids. I don't honestly understand why there is such a pick and choose mentality out there for these types of disorders and whether they get treated or not.

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EDIT: The heart autoantibodies and the beta/alpha autoantibodies I don't believe have an explicit blood test yet.

The ACHR can be run here: http://www.mayomedicallaboratories.com/test-catalog/Overview/89904

Sorry, I don't believe the bloodwork exists for the newly discovered heart autoantibodies.

The antibodies to the nerves are these ones:

http://edrv.endojour...bstracts/OR48-1

And of course the ACHR nicotionic antibodies found in 10-25% of POTS patients (which mayo does test for.)

I'm currently in the process of getting referred to Mayo Rochester. We were talking about going there and speaking hypothetically if the blood tests for those autoantibodies did exist, which they may very well exist by the time I get to Mayo as it's going to be a few months.

I think what she said was reasonable, she has done IVIG on patients with AAG as she's trained at Southwestern with Dr. Vernino. She said she's had about half her patients improve with IVIG that she's done this to, but it's a small pool of patients and they were quite more sick than I was. She said IVIG would be difficult if not impossible to approve through insurance and it is very expensive to continue with a long term treatment. Steroids can also be used, but she would need the bloodwork to indicate that it is even autoimmune and in addition long term steroid use is not all that great either. So even though others have improved with steroids, it might be something that can only be a short term therapy.

As for other biologics, they might have a place in POTS treatment, but they're so expensive that we might have to wait for a clinical trial to open up to fund it. I've looked and currently there are no clinical trials employing immunomodulation for POTS. However, I emailed the authors of the heart study from Mayo and they transferred my question to other physicians at Mayo and I will try to find out if there are clinical trials opening up. Hopefully there will be some when I go up to Mayo.

Overall she answered my questions very well and made an honest effort to help me out. She herself was on Florinef for another reason and told me of its safety profile and got me on a lower dose.

It's just refreshing to have someone with experience to talk to. It's the worst feeling when I ask a POTS question to another doctor and get the dumbfounded, "huh" expression.

I especially like how she said, "What were you doing with a cardiologist? There are no cardiologists in Austin who treat POTS, This is in neurology's field."

She knows what's up.

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Me too, Im glad you feel like for now you have someone who is prepared to try new ways to possibly help.

Thanks for putting the exact details for Auto immune blood works. Im seeing a Immunologist in November in the UK, I know she has no background in POTs, trouble is there are not any in the UK that i could find with POTS interest. So I am hoping when i present this to her i dont get the "huh" look!

Do let us know how you get on.

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Issie, I'm curious what antibody labs you have been having that show up positive?

I have positive dsDNA - which is indicative of Lupus and also lack only one number flagging for thyroid antibodies. I have vitiligo and alopecia and my latest MRI shows changes in my neck of spondylitis. My dad has ankylosing spondylitis and that can be inherited - even though it's considered an autoimmune disorder. (There were changes in my sacrum area 3 years ago - which is where this starts.) My mom also has sojourns. So, there are a lot of autoimmune genetics at play here. My 23&me showed me with genes to all of these conditions. With MCAS there could be an issue with autoimmune issues with this. GastroCrom will help to moderate the immune system and helps with cytokines and inflammation.

I'm looking into another theory that I recently heard - from a doctor/scientist. I have an appt. to see him in a few weeks. He claims he knows why we have lack of blood flow from heart level up and he knows how to fix it. His theory is interesting and he is working with some large hospitals in research with this and POTS. So, when I know more, I will fill you in.

Issie

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