Crohns And Pots

[cleo]

Does anyone here have Crohns as well as POTS? I developed Crohns in my twenties and then in my early forties POTS.

[Chaos]

I don't have Crohn's but have some extended family members with it. I have other gut issues though and I think they tend to be common in POTS patients.

Going on the theory that once you have one autoimmune disease you're likely to have another, it's probably not too odd that you have both Crohn's and POTS since there is mounting evidence that POTS is autoimmune in nature for a certain percentage of patients.

Have you been tested for small fiber neuropathy or autonomic neuropathy?

[cleo]

My initial diagnosis was autonomic dysfunction with neuropathy. I don't know the doc came up with the neuropathy diagnosis. The only tests I remember having were a number of tilt tables and a lot of blood work. If pots is autoimmune then that would explain how I got so lucky to have both:-) Of the two, crohns has been a lot easier to live with.Crohns has made me feel sick in the past but initially pots really took me off my feet.

[Chaos]

Mayo has some blood tests for autoimmune forms of POTS they do. As far as the autonomic neuropathy they usually do a series of tests including a Qsart and other autonomic reflex tests or a skin biopsy.

Aren't you the "lucky" one? I've heard others with nasty autoimmune diseases say the same things when they compare living with both POTS and their other diseases.

Hang in there.

Hugs!

[cleo]

I was diagnosed with pots at Mt Sinai hospital in NYC many years ago, Maybe it was before the autoimmune tests were available or even before it was thought that pots could be autoimmune. I really think in my pots is autoimmune in origin. I've noticed some of my crohns meds make my pots better, like prednisone and remicade. Unfortunately they both have bad long term effects so I stay on the lowest prednisone dose I can and have stopped taking remicade.:-)

If only there were meds with only good side effects:-)

Take care and feel good

[ramakentesh]

There is a new autoimmune mechanism in the process of being published. POTS seems to occur occasionally in those with Sjorgens, Hashimotos, Crohns and inflammatory arthritis (Rheumatoid, psoriosis arthritis (sorry about spelling) and Ankylosing Spondylitis).

Out of interest does your POTs wax and wane or flare and remit? Secondly have you been on TNF inhibitors for Crohns?

[cleo]

Wow. That's really interesting. My pots is with me all the time although some days are worse than others. I had remicade infusions for about ten years before discontinuing them due to an insurance issue. I think the remicade may have helped my pots possibly because it increased my blood count. I miss it but in some ways am happy to be off. It has some scary long term effects:-)

[ramakentesh]

True but at least it didn't make it worse. Thanks for your info.

[Zuzu1287]

I have both. I came down with pots at 19 and crohns at 21. Although I had signs of both much earlier. They really play into each other for me when one is bad the other tends to act up as well.

[AshleyPooh]

My NCS came about a few years after I was diagnosed with Hashimoto's Thyroiditis. (my brother has Ankylosing Spondylitis btw, isn't that interesting?) I have phases where my dysautonomia seems to almost go away, it's so easily treatable. Then there are times like the weeks before, where nothing I did could stop it, I was in misery.

Also as to the Chrohn's thing... after my dysautonomia kicked in, I developed terrible gastrointestinal symptoms. Actually, I developed them before I realized I was having dysautonomia issues. I actually went to the hospital once for unexplained severe upset stomach ( no answers, was told it was IBS). After the dysautonomia started, or while it started, I suddenly become unpredictable. I can be fine one moment, then suddenly an 'urgency' hits, and i'm running off to the nearest restroom. It makes me feel ridiculous, but that's what it does. It's like my nervous system is triggering it on accident!

[cleo]

My pots acts up whenever I have a crohns flare. Actually it acts up whenever I'm sick with anything :-) For awhile I took florinef for pots but had to discontinue it because it drove my bp sky high combined with prednisone. Seems like the three of us are good examples of the aut oimmune mechanism ramakentesh was talking about. I don't know why but its comforting to know there could be a connection between the two.

[Chaos]

AshleyPooh- I'm always amazed at how many time Ankylosing Spondylitis comes up in these forums considering how rare it is in the general population at large. One of my son's has it and 2 others have the gene for it, as do I. I often wonder what the tie in with TNF-alpha is between POTS and AS.

I know when I go off my Wellbutrin my POTS gets much worse. I read an article last year discussing how Wellbutrin is a strong TNF alpha inhibitor (besides affecting dopamine and norepi).

Given how frequently I see people on here who either have AS themselves or have a close family member with it, it sure seems like there must be some connection there somehow.