Cookiegirl,

Yes my doctor is a neurologist and has about a dozen CIDP patients. He is also the medical director for the MS Center of Atlanta and is over seeing several drug company clinical studies for MS. This is how I got on Tysabri infusions. He wanted to see if CIDP reacted as well for me as many of the MS patients have responded to Tysabri in the clinical trials. The severe pain developed about about two months before I started the Tysabri treatment, so I can’t totally blame it on the new drug, although the pain has gotten a lot worse since I’ve been on it.
I saw another neurologist several years ago and he was in total ageement with the treatments I was getting at the time, (PE with IV Solumedrol). I went to see a neuro surgeon last week and he said the pain was due to the progression of the CIDP and gave me a rx for VIcodon. Since my treating doctor refered me to him, it will be interesting to see what his response will be to that when I see him on the 29th. Hope your husband make positive movement. Thanks for your input.
Fred

Hello to all.
Thanks for your responses.

Sue, thanks for the article,it was informative and I’ll retain it for reference. I too had the sural nerve biospy, but other than numbness in the side of my foo, I’ve never had any problems from that. I was on 2000mg a day with Neurontin for aboyt 6 months. Hoping to try Lyrica when I see the neuro in two weeks.

Regarding the IVIG Emma, I took it for about 8-10 weeks at home. Since the same company provided the IVIG and the nurse, I assume it was always the same brand. Its been since ’96 so I can’t remember the brand. Initially, I didn’t keep a very good diary. There was no response to the IVIG at that time. Hoping something in my body has changed and I will have a positive reaction this time.

Christie, it is my understanding that the difference between remitting and progressive CIDP is that progressive never entirely stops or goes into remission, whereas remitting does. I may be wrong on this, so anyone feel free to correct me if I have it wrong. I have been on Hydrocodon for about 2 weeks now and it helps, but think I am going to need something stronger, as this has barely put a dent in the pain.

I have never had a full remission since the ’96 dx so I hope Tim is right about pain coming with remission. Let’s hope for the best

I did find Jennifer’s diary and read about her stem cell trip. What a stong and brave person. All I can say is wow!

Good luck to all and thanks for your input. It is appreciated.
Fred

Dawn,
Thanks for the reply and information on the stem cell. I was on Rituxan for 9 months. Have not tried Lyrica, but will ask my doctor about it next visit. I would like to visit Jenns site to get more info on her stem cell proceedure. Does she have a www. web site or do I find it on the CIDP site? Thanks again.
Fred

Thanks for your replies. I see many posts that indicate good response to IVIG which is wonderful for those who respond to that treatment. When first diagnosed, IVIG was the treatment of choice, but after about 3 months and no improvement, I was switched to plasma exchange which helped for a while. Then it went to oral steroids for about a year. Imuran, Avonex, Rituxan, and cytoxin did not help so I was then switched back to plasma exchange with 2000mg of cellcept daily and 1gram of IV solumedrol after each plasma exchange. This slowed the progression for about 3 years, but then seemed to lose its effect.
I agreed to try the Tysabri which is an MS drug because it is supposed to effect B cells while the other drugs target the T cells. The progression is still on the move, so I am now wondering if the pain is from the disease progressing. I asked my doctor to try IVIG again, hoping I may have a positive result this time. I have been on Lortab and now Vicodin for pain, but neither helps much. I was also on Neurontin a few years ago, but did not respond to that either.
My diagnosis is Progressive CIDP. This is my first experience with pain. Guess I am lucky as I have read posts on the old site talking about pain. I am frustrated that my doctor keeps telling me that there is no pain with CIDP. Maybe he’ll listen better if I can tell him about the responses from other.

Sorry to ramble, but it is helpful to hear from others who have the disease and understand what it is really like.
Hope you guys and your children continue to do well. Thanks.
Fred