I have Sjogren's...and have had it for 19+ years. So sadly, my PN/SFN is due to damage at the ganglion level (ganglionopathy) from the Sjogren's and this is typically permanent/non-repairable. But my neuro/rheumy at Hopkins (only one in the country to be both a neuro AND rheumy---and his specialty is Sjogren's related neuropathy) wanted to try anyway. I was already receiving IVIG for primary immune deficiency (25% of those with autoimmune disease are also immune deficient) so we just upped the dose to appropriate level to treat neuropathy (which is triple what is received for immune def.). At first I didn't think it helped all that much, but now (over a year later at this higher dose) I can tell my autonomic symptoms are improved as well as 'some' pain...but not too much. I do have significantly increased SFN pain the last week before my next infusion, which is a clear sign that it is helping the other three weeks. I am actually able to reduce some of my cardiac meds (for autonomic dysfunction) due to receiving the IVIG. I also have improved Sjogren's symptoms (less dry mouth/eyes and less fatigue). I still have significant joint pain, but I also have psoriatic arthritis, so some probably from that.

By no means is this the perfect treatment, but it is far better than anything else I have tried (and I have tried them ALL over the last 19 years). I am more functional now and although not huge difference in pain from SFN/PN, there is a noticeable improvement...and ANY improvement is welcome. And also considering that I should have had NO improvement due to damage at the ganglion level (documented on special MRI/MRN showing enlargement of dorsal root ganglia), I am very grateful for the little improvement I receive.

I am hoping he will repeat my skin biopsy this next year to see if it shows changes in the morphology (condition) of my nerve fibers (that were previously segmented, tortuous, swollen, etc) and density. That would be proof that the IVIG is helping (other than my reported changes).

My neuro told me that Sjogren's related damage is almsot never cured/repaired UNLESS agressive treatment (like IVIG) is done within the first year of onset. This increases your changes of improvement and it decreases every year after. This is why he was surprsed I had any improvement this far out. My improvement may not be much, but it's better than nothing, which is what we expected.

Hope this helps.