Ken, I have heard a lot about cyclophosfamide or cyclophosphamide or (occassionally cyclofosfamide)–better known as cytoxan! It is an older immunosuppressant that has been used for many, many years with autoimmune diseases like lupus, severe rheumatologic diseases and inflammation of kidneys with threatened kidney failure, MS, and myasthenia gravis. It is also a chemotherapy drug and is used in a lot of different kinds of cancers. I know it from working with children with cancer and autoimmune problems. I have never had it myself. Cytoxan reduces the cells that produce antibody. Side effects are nausea/vomiting, temporary loss of hair, irritation of the bladder (need to get lots of fluid when taking this), decrease blood counts with decrease in ability to fight infections, and if one gets a lot of it (high doses as used in cancer not the lower doses for autoimmune diseases) it can affect the ability to have children in the future (sterility). One good thing about it is that it is strong and works pretty fast to suppress the immune system. It is not a bad drug, but it is chemotherapy so is pretty drastic. At the symposium, there was discussion that imuran is used more frequently in CIDP (although it is slower to work that cytoxan). There also was discussion that Rituxan (rituximab) may work in as many as 50% of cases with CIDP and it is not so hard on the body. Rituxan is very expensive and not officially “approved” for CIDP and so many insurance companies may argue or deny it. One of the things to think about with cytoxan is that it may work to suppress the disease activity, but since you cannot keep taking cytoxan for long periods of time–it is too hard, it has to stop the disease process enough so that the immune system is reset. It is hard to get this right in a disease process as variable as CIDP. Personally, I might encourage you to ask about rituximab–it seems to have a somewhat better record in CIDP (although not used as much) and it is gentler.
It is worth saying that immunoglobulin, steroids, and plasmapheresis as believed mainly to act to hold the disease under control while the body heals itself. Cytoxan or rituximab are attempts to “cure” the disease by making the immune system reset. There are positive things about being proactive not passive.
WithHope for a cure of these diseases