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Originally Posted by martinbrace
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
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Hi Martin
It has been some time since the last post and I was wondering how you are?
My treatment is half way through, iv Rituximab and Cyclophosphamide for two days with five days of Prednisilone tablets. Then three weeks off and it starts again so for me just 11 weeks to go. So far so good, a bit of tingling in the arms and hands on day 7 and pins and needles but it soon eases after another day or so DV. Main problems so far is with the anti sickness and anti nausea tablets which adversely affected my digestion but were optional, I am much better off without them.
Needless to say that I am keeping well away from folk as my immune system is compromised and taking all other recommended precautions because, being retired, I can.
How about you then, your condition was much more rapid onset than mine, I do hope that you got the funding and the Rituximab helped.
Best wishes
John