Reply To: A Physician with CIDP – My Story (long)

Gracie,

This is a bit complicated to answer and I just wanted to make sure that if anybody reads my response, that they understand that while I have significant medical knowledge, I am not a neurologist and that I am posting a description of how I came to a treatment decision for this with my neurologist. I will start by saying that because CIDP is a fairly rare condition, there is not a lot of great scholarly studies on treatment and such. There are many protocols published and several treatment options. The two best paper I can find on the subject is from the New England Journal of Medicine http://www.nejm.org/doi/full/10.1056/NEJMra041347 and from Dr. Gorson http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3487533/ . I would also suggest that you view the video that Dr. Gorson did for the CIDP foundation found on this site if you have not already done so. It is located at https://www.youtube.com/watch?v=5cLbFKc3Vkk as well. Bottom line is that many of the protocols for IVIG (other treatments vary) suggest getting IVIG every 3-4 weeks for the first 6 months. Most patients see an improvement in symptoms by usually the 3rd treatment. A significant number of patients after the 6 months go into a remission where they don’t need the IVIG but there is also a subset number of patients that will continue to have progression in their symptoms. A lot of factors are involved in this including the time they have had the disorder and the nerve damage already associated and others. Some patients also do not respond as readily to IVIG and may respond to other treatments better. The duration of the effect of IVIG therapy is somewhere between 6-8 weeks given the half life of the medication.

So, given this information, I had a long discussion with my neurologist. We decided that I would do the IVIG around every 4 weeks for the first 6 months and monitor the symptoms. I have already had improvement of my strength and return of some reflexes so I have had a positive response. After the 6 months, the plan is to increase the time between dosing by a week each time to get within the goal of no symptoms between IVIG doses that are 8 weeks apart which would be cause to call it remission. It could be that I am in that group that does not get to this point but given my response so far, I am hopeful. Although a long response, I hope it was helpful.