CIDP or not CIDP
Hello everyone
I have seen my neurologist this week and the answer is Not CIDP.
I have been upgraded from D to A, ie my diagnosis is now CIAP, chronic idiopathic axonal polyneuropathy.
I had worked this out for myself, but that does not make it any easier.
The result of the rituximab treatment last July, is still unproven, even the tests I devised for myself, do not show a measurable change in either direction, so at best I have stabilised but more likely slowed the decline.
Now further treatment depends on the haematology. Since the forums have told me that other patients get continued treatment when there is no response, I should at least get a second trial to prove the point.
I now wait for the haematologist to contact me.
Regards
Brianh
CIDP or not CIDP
Hi Brian…I have very aggressive CIDP. It took several years for the docs to figure out what would work. I tried steroids, PT, cellcept, rituxin, imuran, etc., plasmapheresis by itself, IVIG by itself, ect. When they finally figured out a combination that worked, I had been in the hospital for nearly 9 mos out of that particular year, paralyzed from the throat down. My neurologist feared that there was permanent damage & I might not recover any function. However, she came up with a treament schedule of plasmapheresis on thursdays & ivig on fridays. It took nearly a year, but I have regained much of my functioning. We have tried to cut my treatment schedule back to every two weeks, but paralysis occurred within 10 days of skipping the treatment. So for now, I just continue on with my weekly treatments. Even though your doctor may think he is out of options, there may still be things that he can try. If he isn’t willing, then maybe it is time to look elsewhere.
CIDP or not CIDP
Thanks for your replies.
I do have a progressive neurology, I have got to the stage of having to do everything sitting down or leaning on something solid, and my hands have lost most of there dexterity.
I also had a lumber puncture in 2002 as part of my diagnosis.
After the steroid trial, I was given two trials with IVig, then rituximab in July 2008. I can detect no change in my condition, good or bad. I am due to see my neurologist in 3 weeks time, and I think he will say he is not prepared to sanction further treatment.
I am looking for some evidence that others have continued with treatment, even without evidence of improvement.
Treatment may not be effective, but if it stops there is no hope at all.
Brianh