Reply To: New Reluctant CIDP Member/Relapse?

When you say you are relapsing, do you mean you are getting progressively weaker? This is definitely a scary experience and an extremely serious medical emergency. Usually the treatment is IvIg or plasma exchange. I had both, because the IvIg didn’t arrest the progress of the disease for me. I also has prednisone, but this was a temporary (one year) treatment during recovery while I transitioned to another drug (Cellcept).

Everyone responds to the various treatments differently. Treatment of CIDP often requires a little experimentation to find the best treatment. But if you are having an acute weakening, you need intensive treatment to minimize the damage to the nerves. For me, that was plasma exchange — I had nine treatments in a hospital, after which I have been progressively recovering.

Good insurance is very important with this disease, because the early intensive treatments which are sometimes required are expensive. If you are not covered for them, you need to find an alternative. Perhaps others who come here have some experience with that.

Are you seeing a neurologist now? Is he or she experienced with treating CIDP?