I was on Cellcept…

April 22, 2009 at 3:02 pm

Hi Guitarman,
I was on Cellcept about 2 years ago.
I did not have any side effects from it, it is just that it did not do anything for me, and I continued downhill.
I had also tried high steroids, IVIG, and Plasmaphereses, still with no help.
I am currently now on high dose chemotherapy, (Cytoxin).

As it goes with this stupid disease, each person is different.
Most people with CIDP get help with IVIG or Plasmaphereses.
But there are 5% who do not get help with the normal protocols of treatment, and I fall into that category. I continue on a slow downhill, as the Cytoxin seems to slow the progression, however, is still is going downhill.
Perhaps your husband needs to go to the next step as well, (there are not many steps left, however, I did not see that you neuro tried plasmaphereses with him). PE helps many people that the IVIG didn’t help.
If you want some more info, since I have been through them all, and am on this LAST step, (with the exception of the experimental stem cell transplant), just email me…