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Poll: What Type Of Dysautonomia Do You Have?


Nymph
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  • 2 weeks later...

Thanks for everyone who's joined the poll. It's very interesting to see the proportions.

Rich, I just got a skin biopsy for SFN due to Sjogren's on Wednesday. I am very interested to learn the results. However, then there is the decision about meds to make. My rheumy mentioned Rituximab and Imuran. I am also looking into other off-label options, as I am concerned about serious side effects. There are several options in trial now. I wonder if I should just wait...

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Many biologics have very very deadly side effects much worse then old school immunosuppressants like prednisone. I feel like a lot of doctors are using us as guinea pigs I don't think that's safe or okay. If even one of us get the deadly side effects that's one too many. I think IVIG should be tried before one of those. Also IVIG has better results when combined with strong second generation immuno meds

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I don't neccessarily think that they are using us as guinea pigs. After all, biologics have been extremely effective for some people. Since I may develop RA I am glad that there are at least options now, even if they aren't the greatest and aren't effective for everyone. However, I agree that ivig has a much more favorable risk/benefit ratio. Different docs have a different read on what's acceptable in that ratio. However, I do think that's a decision I will need to make for myself. However, ivig has major access problems, which you know. I highly doubt that any doc is even going to recommend that for me until I get considerably worse, let alone get it paid for.

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Nympnh,

2 more days and the waiting game is over! I wish you the best on Wednesday, Nicole. No matter the outcome, you've got friends who understand here at DINET. :)


Hey Rama,

I wasn't aware that doctors were using alpha inhibitors for SFN. I don't have it, but a really close friend of mine, so I'm trying to learn as much as I can to help her. So the TNF alpha inhib's are medications like Humira, Enbrel, Remicade, those are the only ones I'm familiar with. Would you mind explaining how some patients respond to these meds? Thanks in advance

Sarah

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Thank you, Sarah! Actually, I don't know when I'll get the results. I had the biopsy last Wednesday. It does not matter too much as I won't see my rheumy until July, so I ahve plenty of time to think meds. :)

I have heard something about TNF inhibitors being used for people with RA helps SFN. I will have to look into that. Thanks!

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  • 4 weeks later...

Orthostatic hypotension, Hyperadrenergic POTS, autoimmune dysautonomia..

I have Primary Autonomic Dysfunction with hyperadrenergic syncope. I also have Mast Cell activation Syndrome, which sounds very similar to autoimmune dysautonomia. I also have small fiber and autonomic neuropathy (related to my dysautonomia). My neuro has never used hyper POTS as a dx, I suppose he thinks it is a more global issue. I take Clonidine to regulate my Sympathetic Nervous System to keep my heart and BP from rising so high I could have a heart attack or stroke. Doc says its genetic, and I can see lots of my symptoms on a particular side of my family.

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Lillybee, has your doctor mentioned the catapress (clonidine) patch before? I also have a hyper component and orthostatic hypertension so clonidine has been a miracle med for for me.

Do you have any side effects from the clonidine? The dry mouth and spikes were my two greatest.

Wishing you the best! Sarah

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Hi Sarah,

We talked about the extended release versions a couple of visits ago. Apparently, there is a patch and an ER pill I could try. But, it took forever to work up to the 1mg/3x a day dose I'm at now because I had such severe side effects, so I am leery about changing anything...undoubtedly I'll have some weirdo, only one person ever had that, kind of side effect. Clonidine has been an absolute life saver for me and I hate to do anything that might mess it up!

As far as side effects, I pretty much slept constantly for a month or so and am still very fatigued. I had dizziness and vertigo, and stomach problems. But it's normal for me to respond like that to meds...it usually goes away in the first month or so. It's an absolute "must" in my treatment regime. :)

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  • 2 weeks later...
  • 4 weeks later...

Gettingcloser09: Hi! I think we're in similar situations, although my Neuro at Kaiser doesn't know much so I am being referred to the Autonomic Center at Stanford. Where do you live? Let me know how it goes at UCSF. I'm interested in the different approaches btwn Kaiser and UCSF.

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