Thanks, en bloc.
I've been dealing with this for around 5 years or so. In addition to the psoriasis I get on my elbows, knees, and toes, I sometimes get little crusty rashes just under and to the left of my nose. I have a fair amount of acid reflux issues and sometimes bloating and constipation issues. I also have dry eyes, dry mouth sometimes, and bladder issues.
One interesting observation I've made is that when my feet are burning, my bladder acts up. When my upper legs are burning, I have dry eyes. Strange.
I have been on lyrica for a couple of years now...300 mg a day. Plaquenil for over a year and a half...400 mg a day. I take 20 mg a day of Cymbalta, but I think I will up it to 40 to see if it helps with the burning.
I also have been offered an 8 week trial of prednisone by neurologist where I start off at 40 mg a day for two weeks and then go to 20 mg a day for 6 weeks before tapering down. I have not done this.
July and most of August I was fairly symptom free. Or things were very mild at least. And then it was like someone hit a switch around the beginning of September.
I have asked previously about IVIG, but the docs always seem to say try the prednisone first.
I have been asked to be referred back to my original rheumy because I feel like she at least gives serious consideration that something of an autoimmune process is going on. Now whether she can help me is another story.
Thanks for your thoughts on all this.
David
Quote:
Originally Posted by en bloc
I think you should entertain another rheumy opinion (whether you go back to the first, or seek out another).
Your ANA is tell-tale of autoimmune...just need to figure out which one. I would also suspect your SFN is directly related to your AI disease. And the sooner you figure this out, the sooner you can consider treatment geared toward autoimmune (like IVIG, steroids, Rituxan, Plaquenil etc). Unfortunately, the longer you wait on treating autoimmune related neuropathy, the lower your chances of reversing damage.
My personal opinion on lip biopsy, is if there is ANY lymphocytic infiltrate, then there is obviously an autoimmune process going on. Lymphocytes are NOT supposed to be present. It may not be enough for positive Dx (YET), but it certainly is indicative of an abnormal process. Just a thought.
BTW, how long have you been dealing with this? It may be that your at early stages and that may be why your biopsy is not showing completely positive.
Any other symptoms: joint pain, fatigue, rashes, GI problems, etc??
What are you doing for mgmt at this point?
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