Quote:
Originally Posted by martinbrace
Hi everyone,
I am so glad I have found this website as I feel like the only one suffering from this disease.
I was diagnosed about a year ago. I was treated with IvIg but became allergic to it and my hands started to peel, with treatment they got better but not back to normal. Six weeks later I had plasma exchange which was a five day course and felt 75% better but again this didn't last for long, approximately eight weeks.
I have since deteriorated and have very sore fingertips and toes and very poor walking ability and balance. I went to see my consultant and asked him to explain in layman terms what was happening and he printed off a page from Wikipedia  and just said I will give you more information when you come into hospital. I am waiting for the phone to ring to say to come in and have Rituximab.
I will keep you up-dated .Thanks for listening
Martin |
Hi Martin
Big John here from Hampshire UK. How are you getting along?
My consultant hails from Southampton General hospital a Dr Haider Katifi. This is where the Souths "center of excellence" is - allegedly - and it is where I have received two ivig infusions, strangely a year apart. I benefit from these for nearly 3 months then drop back to slightly below where I was before. Southampton do not seem to go for plasma exchange. They think that the next treatment for me should be Rituximab plus Cyclophosphamide as if treating for Lymphoma (which I do not have). Not sure about that having read the side effects but that is where I am today and still working part time even if I cannot walk a straight line in the dark and have to be careful when I close my eyes in the shower that I do not fall over.
I have an appointment to see the Hematologist tomorrow! last time he mentioned another bone marrow sample and a scan neither of which has happened yet.
Best wishes for your treatment,
Big John