Solumedro and PE
I too did not respond to IVIG when first diagnosed in 96 and switched to PE.
Have been on a varity of treatment over the years, IVIG, PE, oral steroids, IV steroids, cytoxin, avenox, imuran, rituxan,cellcept and now trying Tysabri infusions.
After three months without PE, cellcept and IV solumedrol, I have noticed significant loss of strength, balance and mobility. Declinded so much I had to quit driving amost 3 weeks ago. So I got a PE yesterday followed by 1/2 gram IV soulmedrol. I have had overnight benefit. Balance is better today, able to walk more stable and most of my pain is gone. If this improvement sticks with me I expect to return to driving in a day or two.
As you will see on this site, many CIDP’ers respond differently to the various treatments, so the key is to find the combination that works for you. Hopefully your doctor is up to date on the various treatment protocals and will work with you to try different things to see what works for you.
Having tried all of the treatment mentioned above, the one constant for me has been the PE’s. I have had over 400 so far ranging form 5 days in a row to 3 days, to 2 time a week, weekly, every other week, monthly and every other month. I have gone as long as 6 months, but when I did that I had to have a jolt of prednisone, so I would get 1 gram IV daily for three days. I almost alway get a “boost” from those. Of course the PE’s stop when the doc trying one of the other medications mentioned. The side effects I get from the steroids are rapid heart rate for about a day, kinda of “antsy”/can’t sit still feeling and a huge appetite for several days, then all goes back to “normal”
I have 3 more Tysabri infusions to go, but after the first three, early indications are that it is not helping, so I will most likely go back to PE, cellcept and the 1/2 gram IV solumedrol after each PE.
Many of us, including me have had some real low points, but have bounced back, so the best advice I off you is DON”T GIVE UP.
Best of luck to you and hang in there.
P.S. Consider installing a “comfort height” toilet in one of your bath rooms. They are much easier to get up from than a standard toilet.