Quote:
Originally Posted by Big John
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
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Hi John,
Sorry to say this but it`s nice to meet another sufferer from the U.K, As I was wondering if I was the only one suffering with this problem.
Since my last post I have had another plasma exchange and again it lasted 8 weeks or so. I can walk about 3 steps before falling down so I use a wheelchair or zimmer frame. My consultant is a Mr Munro but one of his registrars a Dr Alex Faulkes has been my main man. He applied to the PCT for funding for rituximab but is was turned down due to the disease not being rare enough.He totally disagreed with their decision and appealed. This time we was approved and I am just waiting for a telephone call to say come in to hospital.
I have just received a letter from my consultant to my Doctor saying rituximab can last between 6 months to 3 years but on average it lasts 1 year.
I am not looking forward to the treatment but needs must.
A little bit about myself.
I am a 44 year old male, I was working full-time as a support worker with people with Huntington Disease until April but I have deteriorated a lot since then so I am unable to work at the moment.I live in Kent and the hospital I use is the Kent and Canterbury.
If you want you can contact me here or on Facebook.
Hope you are keeping well,
Martin Brace