Reply To: Anyone with Sensory Predominant CIDP?

Hi
Yes I imagine you can’t wait for the IVIg and I imagine you will get some improvement. Presumably you are in the States? Does your insurance pay? After that you need to find out how often you need it. PE apart from having a line inserted in your groin each time is pretty harmless. It drains away your plasma and you see it filling up in a bag and it’s dark yellow. Clotting Levels become an issue but it’s all monitored. I have my next PE the week of 26th February but I go into hospital on the Sunday. I wish you all the very best and please stay in touch because I have never come across anyone with CISP and we may be able to pass on useful information to one another. Do you have any idea why you might have got this? I always blame it on chronic stress that I went through. The problem with CISP my consultant has told me is that because it’s so rare no drug company will pay for trials and so it’s trial and error for the patient and clinician. Once you have tried the three frontline treatments (steroids (I know you and I can’t have these), IVIg and PE) you can then look at immunosuppressants but they come with an obvious risk. Do let me know how you get on with IVIg and similarly I will let you know about the Rituximab.

Regards O