July 31, 2008 at 1:59 pm

If JH is dead set against plasma exchange(thought I can’t imagine why)
you could consider contacting Dr. Carol Koski at the University of Maryland medical center. She is on the GBS/CIDP medical advisory board. I saw her for a second opinion a number of years ago and she agreed with my CIDP dx. I found her to be very well informed and interested in my situation even though I was not a regular patient. She came very highly recommed to me from people I knew in the medical community,(my brother is a doctor in PA) so I took the trip from Georgia to see her. Perhaps a call to her office to see if she uses PE as well as IVIG and other medications may be of benefit. It would be hard for me not to get another opinion if my treating physician refused to try a different treatment if the one he is using was not working for me. I am curious, if you have qualified for SSDI, how in the world can a doctor not consider your case “bad enough? It is extremely difficult to get a claim for CIDP approved with SS.
As for treatment flexibility, I went from IVIG, to PE, to steroids, imuran, avonex, cytoxin, and rituxan along the way. The thing that worked best for me has been PE with IV solumedrol. Over the past few months, I have relapsed, so my doc is trying an entirely different approach now. Last tuesday I had a PE with solumedrol, then 7 days later I had an Infusion of Tysabri(MS drug), then yesterday IVIG, so 4 medications in 7 days. It is his intent to try this series for 3 months to see what happens. If I see any improvement, I will post a thread so others can talk to their doctors about if if they are not making any progress with their current treatments. As we all know, what works for one does not necessarily work for someone else.
Just a thought. Hang in there.


July 28, 2008 at 7:40 pm

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.


July 25, 2008 at 10:52 am

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.