Hi everyone,

New member here. I have some questions I hope I can get help with.

I was diagnosed with autoimmunity in 2011. Of four rheumatologists seen so far two called it Sjogren’s and two called it Undifferentiated Connective Tissue Disease. I had very high ANA and SS-A but no dryness; my symptoms were sore joints, fatigue, orthostasis and small-fiber neuropathy.

400 mg/day of Plaquenil completely eliminated the joint pain. I cut it back to 300 a day a few years ago and early this year to 200. As the joint pain did not return I was thinking of cutting it back further, but I’m not sure if it is a good idea since I don’t know if it is slowing the disease progression. My orthostasis also seemed to improve greatly around the time I started treatment. Would Plaquenil have helped that?

Meanwhile, I saw a neurologist for tilt-table testing two years ago, for a problem of excessive sweating and overheating. He diagnosed dysautonomia probably but not certainly due to autoimmunity. He thought I should get more aggressive in treating the autoimmunity and mentioned IVIG. The rheumatologist I had at the time - whom I trusted the most of all my doctors and who has since retired - did not think it was warranted. I have much less confidence in the new rheumy and do not currently have a neurologist.

The numbness in my toes goes back at least ten years and all that time has seemed either stable or progressing extremely slowly. But recently I realized that it’s affecting my fingers now also and I’m having some new sensations in fingers and toes. Not pain, but definitely something different. I’m very concerned now that the nerve damage is getting worse.

If the nerve problems are due to my autoimmune condition, is there any evidence that the progression can be slowed by treatment? Is it possible that the Plaquenil has slowed it and that reducing my dosage was a mistake?

I feel generally pretty healthy and I don’t want to mess around with any risky drugs if I don’t need them, but if there is good evidence in favor of trying them then I would.

Thanks for reading, any thoughts appreciated.