I’m sure you will get lots of replies. Everyone responds differently. Since last Sept, I’ve received ivIG, 100 Mgs of Prednisone and Plasma Pheresis and nothing has helped yet. So, I’ve been getting progressively worse. I just started seeing a new neuro-muscular specialist and hopefully he Will be able to come up with a new treatment plan. Good luck with your ivIG.

ken

From a post at the end of last year. I have posted it a few times so I’m sure a number of people have already seen it.

[QUOTE]Last weekend, the Philidelphia group had a chapter meeting. The speaker was Dr. (sorry, I am going to get his name again from the foundation and post it for you)…… There were a number of CIDP patients in the group and he answered a number of questions regarding treatment, what was effective, what to do if certain treatements werent effective etc. Here are some of the notes I took from his answer and question time. ….

# As we know, certain varients of CIDP react better to certain treatments. He said that in his experience, if the patient did not respond after 2 or 3 IVIg therapies then he added sterroids to see if there was a response.

# next step would be (I think the IVIg would have been discontinued when following this step), High dose sterroids everyday, then change it to every other day and add Cellcept or similar (up to 3g), and then lower the sterroids more.

# Then if that didnt work, he would try Plasmapharesis

# consider Retuxan (sp?)
[/QUOTE]

Hi, Alice.

For the first five years IVIg worked a treat for me and I only had to have it every six to eight months. Then it has stopped working (despite monthly infusions for the first four months this year) and steroids (both low dose and high dose) only make me sick. We’re now considering what to try next; options include plasmapheresis and drugs such as methotrexate (which has been under clinical trial here for the past two years and, although the results haven’t yet been published, anecdotally seems to help some), azathioprine, rituximab (Rituxan), etc. The problem is that I’ve apparently moved from a relapsing/remitting form of CIDP to a progressive form, and I also have two other autoimmune disorders.

So much fun being a guinea pig. Squeak.

Deb
London

Hi Alice,
I’ll try to answer the way I see it for me. I was basically just on IVIG’s, from 1999 to 2003, although methotrexate and imuran were added for a short period. My doctor wanted me to stay on just IVIG’s and I had faith in him, so that’s what I did. The first two years were my roughest with falls that caused me to be black and blue from ankle to chest, feet turning sideways, broken bones and sprained ankles. After the second year, my falls stopped and never returned. Any fall now would be carelessness or misjudgements. I have been in a remission for five years now and will not need treatments unless I show signs progression/relapsing has returned. When I was receiving the IVIG’s, I always felt the same, if worse, just a little bit, but always the same. If view of the way I reacted to IVIG’s, don’t you think that my remission showed that it works!!!