Hi Eric,
It has been an interesting and wild ride over the years. Some good, some pretty rotten, but it is what it is and I enjoy the good and try not to worry about the bad as it doesn’t help. Being an x scholarship football player, the initial adjustments were extremely difficult, but with time I found life much better for me and everyone around me to be much better if I just play the hand as dealt and look for the good or up turns when they come. I have also learned moderation when the good times show up, and am careful not to try to do to much at one time, because when I do, I pay for it over the next several days.

I am afraid the new treatment protacol I have been trying may end this month as I was just notified by my neuro that Biogen has reported 2 new PML cases in users of Tysabri. Needless to say, I am very disappointed because I was holding out hope that “this may be the one” for me, despite no signs of change after the first 4 infusions. Guess it wasn’t to be, so I’ll go back to PE and solumedrol. I will try to get my doc to continue the IVIG with the PE for the next two months to see if that combination helps improve my leg strength and balance. Just another bump in the road, so we”ll keep on trying.
Hope this finds you better and improving. Never give up, because you never know when something good will happen.
Fred

Hi Eric,

My neuro has never mentioned PML with cellcept, and he has quite a few MS and CIDP patients on this drug. I have taken it for a total of about 5 years since my dx in 96. My dosage has been 2000 mg/day. When we discussed the MS drug Tysabri, he told me about the FDA pulling it off the market in 2006(?) due to 3 deaths from PML. The FDA subsequently found that the deaths were due to the use of two Biogen MS drugs together, Tysabri and Avonex. My doc’s practice has over 600 patiens on this(including trial studies) and has told me there have been no reported problems, so I am taking the risk, and I am a very, very conservative person, but with a “half full attitude.”
Cellcept has been around a long time so any deaths reported from use of this drug should be available. Your doctor should be able to tell you where to find out, or better yet, should be able to tell you. Primary use is in organ transplant patients to help prevent rejection of the new organ.
As for the PE, my neuro also insisted on the IVIG and steroids as his front line treatment, but after about three months, he agreed it was not working, so we started PE and have continued it off and on since early 97. It has clearly been my life line. Everyone responds differently to the various treatments, so you need a doctor that will work with you to try other protocals until you find the one that works for you. Good luck and keep pluging away at him.
Fred

Deanop,
PML is Progressive Multifocal Leukoencephalopathy, a rare infection of the brain. Most often causes severe disability or death. It’s bad stuff because there is no treatment or cure for it. The risk factor increases when the body is on medications that weaken the imune system. This is one of the potential side effects of the drug I am now on for my CIDP, Tysabri.
Fred

Eric,
Many on this site have been on cellcept without problems. I have taken it for over 4 years without problems. Its a risk reward assessment for many of these medications as most list some pretty heavy side effects. Steriods have lots of bad potentials as does cytoxin and rituxan. I decided to try Tysabri, an MS drug that the FDA took off the market because of PML deaths reported. Its back on the approved list, but as other treatements have lost their effectiveness, I decide, for me, the risk is worth the potential reward. Do your research, weigh the potential gains against the risk, then decide what is best for you. Good luck in your journey.
Fred

Hello,

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.

Fred

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.

I had shingles about a year before the CIDP came to visit. Back then there were no pills and my episode lasted about 3 weeks. Know how painful they can be. Good luck and congrats on the chair. They (the chair) sure makes like easier!
Fred