autoinflammation and dsyautonomia

[Guest KiminOrlando]

@dizzytizzy My advice is to get a new Rheumatologist. Plaquenil is used for many more things than just RA. Lupus is the big one and what made the news during the whole hydroxychloroquine controversy. It sounds like your Rheumatologist is old school and not up on the latest in Rheumatology or just not really interested in your case. If you can find a good one and they will consider your symptoms and your old ANA being positive, they may look at starting other meds like Imuran or Methotrexate. Your pituitary issues may somehow be rolled in to this mess and further treatment for autoimmune immune may help. It helped me. Keep plugging away at it. Don't give up. I really think you are on the right track.

[p8d]

Keep getting ANA tests if you can. I was tested roughly every 5 years for suspected AI issues and they were always negative. After I developed dysautonomia I was tested 3 times in 18 months before one came up positive. The tests really aren’t terribly reliable and that’s why a good rheumatologist will treat based on symptoms.

[erinlia]

Before I got the diagnosis of POTS, my different Rheumatologists felt my issues were autoimmune.  My lab never showed much clear evidence of this.  The meds that helped my POTS symptoms more than anything were methotrexate, humira and Plaquenil.  I was on Plaquenil for years.  It was the most helpful med i ever tried with the least side effects.   I've always felt like my POTS is tied to an immune disfunction of some sort.   Very interesting to hear that Plaquenil has been helpful for some of you. 

[Pistol]

@erinlia - according to Dr Blair Grubb and Others ( as talked about on the Dysautonomia International Dysautonomia Conference 2020 ) recent studies have found a STRONG link between Dysautonomia ( namely POTS ) and AUTO-INFLAMMATION. This is different from autoimmune - it does not have AI positive blood tests but shares many symptoms with AI. It does not involve the immune system that deals with antibodies but rather the innate immune system, such as T-cells etc. Many POTS patients also suffer from AI-ike symptoms but have negative lab work-up. 

I have experienced generalized unexplained joint pains, at times severe, since onset of POTS. Over the years I had MANY blood tests for AI, and saw a rheumatologist twice - nothing ever showed up except for an elevated ESR ( a sign of inflammation ). My xrays never showed anything but an arthroscopy of my knee showed increased synovial fluid - another sign of inflammation. My autonomic specialist put me on Plaquenil back in January, stating that it should help my joint pains and possibly help my POTS symptoms as well. And - Tada!!! - it did! My joints hurt only briefly when the weather changes, and I have TONS more energy! This energy also helps me to exercise, which in turn helps the joints. My BP has lowered to where I was able to decrease some of my meds, including the beta blocker. I have still OI and occasional pre-syncope, so it does not help for ALL symptoms - but it helped for many! 

[erinlia]

interesting!  Is there a way I can listen to that conference?

[Pistol]

@erinlia - I am not sure, check on their website!

[Pistol]

As promised earlier in this thread I want to give an update on the effects of the Plaquenil: it works as expected! The joint pain only affects me during sudden weather changes and I have so much more high-energy days! I have been able to be more active, and the increased exercise in turn seems to help the POTS symptoms. I don;t have fatigue as often, and my bad periods are shorter. Although no cure I am definitely grateful for taking this med, and will continue to do so!!! Fatigue was almost one of the symptoms I minded the most and now it is tolerable!!!! My opinion on Plaquenil : 👍