Reply To: Problems with IVIG
Hi Karen, nice to hear from you! The SCT is still considered experimental and would have bankrupt me at a cost of nearly $500K!
As an alternative, I have successfully used Rituxan to treat my CIDP and Lymphoma. You can search the forums and read my detailed results.
Rituxan doesn’t suppress the immune system, it applies a marker to cells that don’t belong (typically antibodies that are attacking “self” or arthritic conditions that are causing inflammation) then the immune system removes the marked cells like they would any alien invader.
There was a CIDP study made in 2012 and a very small fraction of the study participants (less than 0.5%) got melanoma from taking Rituxan. This raised a red flag to many neurologists. Then a 2014 follow-up article may have further stoked those that were on the fence about it:
What is needed is a comprehensive study to ascertain the risks of melanoma when using different infusion rates of Rituxan. The lesser of the two evils, on an individualized basis, may be what is needed to make the best treatment decisions.
Its unfortunate that our disease varies so much between people and treatment approaches vary amongst the medical profession. I think this is all related due to the rarity of CIDP and medical professionals experienced with it. This coupled with the fear of making a bad decision and being sued, has many medical providers procrastinating a decision.