We are commenting on things that matter and that are important to us, but I hope that people realize that it is with a goal to help each other. Dawn said it so beautifully “I think God put us here to help each other in our times of need whatever they may be. ” I also think that that is the reason this site exists and what we do best for each other.
WithHope for a cure of these diseases

I have several suggestions just for you to think about.
First, Medicare and medicaid seem often to say no the first time to anything expensive, so if you have not appealed, do so. Gather as much information as you can on the use of rituxan in CIDP and send it all in. Make a summary letter with anything written from neurologists about it–including published papers in the medical literature and quotes from the CIDP handbook. Also ask for a person who specialized in CIDP to review the appeal and give them the names of all physicians on the GBS-CIDP advisory board. Just any neurologist will not do–be insistent that it needs to be at least a neuromuscular specialist and preferably someone with a lot of experience like those on the board.

At the symposium, it was stated that the consensus was that about half the people with CIDP responded to Rituxan. The percentage of responders among those having CIDP in association with a monoclonal gammopathy was higher, but there were a lot without this that responded.

Second, if the appeal does not work, look into the patient assistance program. I have the address at work. We were able to get free rituxan for a young man with relapsed lymphoma from one of the nations of the former Soviet Union who was over here in the US as a student and without insurance. It also took a lot of persuassion.

Third, I have been hearing this week about subcutaneos IV IgG administration and that there are a lot fewer side effects because it goes under the skin and is slowly absorped rather than going straight into the bloodstream. I do not know if this would work as well for CIDP (since it is a new way to give) nor do I know if it is “safe” in someone that almost anaphylaxes, but it seems safer and worth asking about. It is given weekly. The drug administration company representative that I was talking to had CIDP and GBS listed as reasons one might want to use this way of administration, but she did not know data about its use in these cases. She was going to ask and I will pass on to this site when I hear anything.

WithHope for a cure of these diseases