Nymph Posted September 13, 2014 Report Share Posted September 13, 2014 I am in the process of being evaluated for POTS. I have probable Sjogren's - highly probable, I would say. I have specific antibodies for RA, too. So far my arthritis symptoms have been transitory, thankfully, and no x-ray damage yet.I wonder, in Sjogren's particularly, or in whatever you have, is POTS caused by small fiber neuropathy due to autoimmune activity? If so, can it be treated with biologicals or other DMARDs? (I'm on Plaquenil. Pretty sure that doesn't do squat for neuropathy.) I am seeing my rheumy in November. I should have my POTS workup done by then. I want to be prepared to bring this up with her. Please share your experiences and knowledge! Quote Link to comment Share on other sites More sharing options...
Foggy01 Posted September 14, 2014 Report Share Posted September 14, 2014 RichGotsPots heads a support group on Facebook for people with Sjogrens-caused autonomic Small Fibre Neuropathy and POTS. I don't think he hangs around these forums much anymore, but you could try sending him a message here or maybe one of his friends will pm you the FB page. I don't have a link.Good Luck. Quote Link to comment Share on other sites More sharing options...
Natops Posted September 14, 2014 Report Share Posted September 14, 2014 How long have you been on Hydroxychloroquine (Plaquenil)? Any side effects? Do you notice any reduction in pain or inflammation (that is if you suffer from any)? Quote Link to comment Share on other sites More sharing options...
Nymph Posted September 14, 2014 Author Report Share Posted September 14, 2014 Awesome, Foggy, thanks!Natops, I've been on Plaquenil for two years. My only side effects at the beginning were bad gas and crazy, vivid dreams. The gas stopped once I stopped taking them with food. The dreams went away on their own after awhile. I am thinking about cutting back my dose now because of the risk of retinal toxicity over time. I'm on a pretty big dose for my size.Yes! Plaquenil has helped me a lot. It helped with general fatigue. I think that's getting somewhat worse again but I think that's autonomic. It helped a TON with joint pain. I still flare occasionally but in between I have very little joint pain. It's totally worth it for me. Why do you ask? Quote Link to comment Share on other sites More sharing options...
Nymph Posted September 14, 2014 Author Report Share Posted September 14, 2014 Is it the one called POTS + Sjogren's? Quote Link to comment Share on other sites More sharing options...
Anoj Posted September 15, 2014 Report Share Posted September 15, 2014 I have hashimoto's Quote Link to comment Share on other sites More sharing options...
Nymph Posted September 15, 2014 Author Report Share Posted September 15, 2014 Hi Anoj. Do you know if your hashimotos is related to your dysautonomia? Which started first? Quote Link to comment Share on other sites More sharing options...
docradmd Posted October 9, 2014 Report Share Posted October 9, 2014 My dysautonomia started after starting synthroid for hashimotos. Quote Link to comment Share on other sites More sharing options...
Friedbrain Posted October 9, 2014 Report Share Posted October 9, 2014 I've had Hashimoto's since high school so it was the first problem, by far. Late 20's dry eyes but wasn't diagnosed w Sjogren's until my 40's. I've had MS like symptoms (VERY bad mid 30's) and my new neuro last year said that Sjogren's and MS can present the same so if MS wS ruled out, Sjogren's is probably the culprit for a lot of my problems. <shrug> no other docs know this so it doesn't help much. I did start on plaquenil and it seemed to be helping w some urinary trouble (long story but is worse with less steroids so us probably in some way related to inflammatory process), but then I had an allergic reaction -trunk rash-and stopped taking it. Fwiw Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted October 10, 2014 Report Share Posted October 10, 2014 Very common to have either inflammatory autoimmune conditions or autoimmune conditions with POTS. I have Ankylosing Spondylitis and POTS that cycle between each other. Thankfully my POTS is episodic although my general fatigue levels arent.Current theories are as you say - autoimmune or cytokine mediated lesions on small fibers causing impaired small vessel venous return or more recently autoantibodies blocking/binding to alpha 1 adrenoreceptors impairing venous return or causing a sympathetic response to compensate. the confusing this is that in both scenarios the sympathetic response can compensate for the blood flow abnormalities creating a mild hyperadrenergic state, or fail and leave you dizzy and very fatigued. Hashimotos is common, chrohns, RA, Sjogrens.There is a study right now evaluating whether POTSies with EDS have the same alpha 1 autoantibody levels as POTS post viral onset or POTS with comorbid autoimmune disease.POTS in a setting of comorbid autoimmune disease is now presumed to have a similar etiology. It may wax and wane in some. Quote Link to comment Share on other sites More sharing options...
Nymph Posted October 10, 2014 Author Report Share Posted October 10, 2014 Thanks, Ramakentesh and Fried Brain. That is very helpful. I just found out yesterday that my best friend has Hashimoto's. At the moment I'm mad about how many people I know with autoimmunity. I'm tired of it stealing from me! I just got a free rowing machine! I am hoping that helps, as I have heard that exercise can make a big difference. Other than that, I am thinking of starting methotrexate. We shall see what happens with that. Quote Link to comment Share on other sites More sharing options...
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