There was discussion at the GBS/CIDP Symposium in November about alternative treatments. Some of this was summarized in the thread “Notes of CIDP”. First to state, there was a good deal of enthusiasm for pulse steroids–given at high doses once a month typically over several days–by mouth or by vein– or at moderate doses weekly–more likely by vein, but also potentially by mouth. Gareth Parry is one of the neurologists that has published on pulse steriods and I have a couple of his papers. I will look for them. The most common discussion were decadron 40 mg by mouth for four consequtive days a month or solumedrol (methylprednisolone) by vein weekly. The side effects are a good deal less than daily or even every other day steroids and the efficacy seems better. One quote was of 10 people treated with the decadron pulses, six were much improved (“in remission”) after 6 months. Steroids have the benefit of being better studied and as well often seeming to add to/build on the benefit of IV IgG. They also work faster.
The discussion with Imuran (azathioprine) or CellCept (mycophenolate) was that they are really slow to act–taking up to 12-18 months. In a survey of 300 people with CIDP in the US, 13.6% were taking Imuran to help with their CIDP (many with other therapies as well or before). By comparison, about 6% took cyclosporin, 5% methotrexate, 4% mycophenylate, and 3% cyclophosfamide. There have been concerns about the degree of immunosuppression with CellCept and the risk of serious second problems–such as lymphomas and perivascular leukoencephalopathy which causes the brain to not work right.
there was also pretty good enthusiasm for Rituximab as a promising therapy although there is not much published about it yet.
Check out that thread in the Main Forum posted in mid November 2008. Good luck.
WithHope for a cure of these diseases.