Neuropathy suddenly active again

[trc1962]

Happy Sunday to all! I have posted often in the past 7 or 8 months. I had my neuropathy flare last June and it was pretty severe and caused weakness and all the neuropathic discomfort. It brought my job as a health and fitness teacher in question and scared me badly. I was on high doses of prednisone and it maybe helped and I was also started on mycophenolate 500 mg twice a day. Slowly over much time things improved until I felt better. My prednisone was slowly reduced from 60 mg down to 10 while taking a different form of mycophenolate (called myfortic). Just the past week or so the neuropathic stuff has returned, the burning, itching and it feels like it eats my muscle. I asked my rheumy about IVIG as treatment and he said we need to maximize the meds I have now and not look at IVIG. Now he has me on 1000 myfortic morning and night and I am a little concerned about my liver. I had liver problems in 2011 when I was on higher doses of Imuran and I went through jaundice and almost liver failure. To recover from that I had to take huge doses of prednisone and it does such a number on my body. Is it wrong I want to try IVIG? I should add that I had a skin biopsy last August that showed I had a fair amount of nerve fibers so they say no to IVIG. The prednisone has bloated me horribly and I am dealing with high blood pressure and I am just really sad about not trying IVIG because maybe it would stop this progression and I could get off the prednisone. Sorry it is so long, but needed to give background and vent some also. It is so frustrating to deal with this.

[cccourt1942]

Good day TRC,
     I wish I could respond knowing something about this topic, but I don't.  I can say I had what I thought were my legs going to sleep for a number of months.  I thought it was my legs going to sleep!!  Then, in one week, I sprained one ankle after the other...in exactly 7 days.  Both by attempting to stand..and my legs were "asleep".  I wrapped the ankles, got to a dr...then to PT.  About 6 weeks of PT (and time!!) got me ready for an upcoming trip.  So ankles wrapped, off I went. 

     THEN I was dxed w' SjS.  Didn't even mention the "falling asleep legs".  About a year later I began feeling various "spots" with numbness.  One was my cheek and lips.  Not kidding. As numb as numb could be.  Then hands, then  A toe.  Then a foot.  THEN it went away.  At the time I had just started LDP @ 5 mg per day. 

     To this day, (and still on LDP-3mg) I haven't had the reoccurrence. 

     I read some unusual instances of neuropathic incidents on this forum.  I gather it's either like mine or ...well...you know. I think the good news in what I'm reading of your account is it is coming and going. I am estimating you are younger than 55 as you are still working.  I think I would be glad they don't use the big guns with you yet..especially if you are 40ish.  Years ago..decades ago...a GP would give me a Medrol pac for sinus infection.  He Rxed the drug sparingly.  He told me I would need it in my old age.  Again.........decades ago.........decades before my SjS dx.  I am 74 and am coming up starting my 3rd year on LDP.  It's bad, it's dangerous, and it's my life giver at present.

     I hope those who know this topic will weigh in.  I can tell you are very concerned.

Happy Super Bowl,
ccc