Nymph Posted May 2, 2015 Report Share Posted May 2, 2015 I hope to learn what the proportions are on DINET. Just curious! Quote Link to comment Share on other sites More sharing options...
Nymph Posted May 6, 2015 Author Report Share Posted May 6, 2015 If you put "other" - could you let us know what it is? Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted May 15, 2015 Report Share Posted May 15, 2015 Orthostatic hypotension, Hyperadrenergic POTS, autoimmune dysautonomia.. Quote Link to comment Share on other sites More sharing options...
Nymph Posted May 15, 2015 Author Report Share Posted May 15, 2015 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... Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted May 17, 2015 Report Share Posted May 17, 2015 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 Quote Link to comment Share on other sites More sharing options...
Nymph Posted May 17, 2015 Author Report Share Posted May 17, 2015 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. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted May 18, 2015 Report Share Posted May 18, 2015 Some patients with sfn respond to tnf alpha inhibitors Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted May 18, 2015 Report Share Posted May 18, 2015 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 advanceSarah Quote Link to comment Share on other sites More sharing options...
Nymph Posted May 18, 2015 Author Report Share Posted May 18, 2015 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! Quote Link to comment Share on other sites More sharing options...
smarti54 Posted May 21, 2015 Report Share Posted May 21, 2015 I was told Hyperadrenergic pots with questionable neurogenic component. Quote Link to comment Share on other sites More sharing options...
LillyBee Posted June 13, 2015 Report Share Posted June 13, 2015 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. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted June 16, 2015 Report Share Posted June 16, 2015 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 Quote Link to comment Share on other sites More sharing options...
LillyBee Posted June 17, 2015 Report Share Posted June 17, 2015 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. Quote Link to comment Share on other sites More sharing options...
Raisin Posted June 28, 2015 Report Share Posted June 28, 2015 I was told I have autonomic neuropathy and that is causing POTS but they don't know what is causing the autonomic neuropathy. I am a conundrum wrapped in a riddle. Quote Link to comment Share on other sites More sharing options...
Gettingcloser09 Posted July 25, 2015 Report Share Posted July 25, 2015 My gp and cardiologist had diagnosed me orthostatic hypotension and dysautonomia which is just generic for somethings wrong with the autonomic nervous system. I'll be seeing a neurologist in ucsf soon. Until then I can only guess as to what's going on with me. Quote Link to comment Share on other sites More sharing options...
tgleiker Posted July 25, 2015 Report Share Posted July 25, 2015 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. Quote Link to comment Share on other sites More sharing options...
Gettingcloser09 Posted July 31, 2015 Report Share Posted July 31, 2015 I'm in the central valley and my appointment is on the 11th of next month. The rally sad thing is that my symptoms are episodic in nature but the lightheaded-ness. Quote Link to comment Share on other sites More sharing options...
fitnesskelly Posted October 2, 2015 Report Share Posted October 2, 2015 For sure OH, but no official diagnosis or testing. Going to ask the doctor that suggested I have some form of dysautonomia to be referred to a specialist, so I know for sure what form I am dealing with and get the proper treatment. Quote Link to comment Share on other sites More sharing options...
Sylvie33 Posted December 8, 2015 Report Share Posted December 8, 2015 Hi,My "other" is autonomic and sensory neuropathic. Cause may be drug toxicity but I am seeking further testing for autoimmune issues.Sylvie Quote Link to comment Share on other sites More sharing options...
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