Hi Folks.
I am Mike from the UK (new member) I was originally diagnosed with Axonal Peripheral Neuropathy in 2004 and have been seeing a specialist Neuro doctor every year since that diagnosis. In 2008 after more extensive blood tests the diagnosis was changed to Anti Mag Neuropathy. He suggested I should have IVIG but I studied all the reports and decided against this. In December 2009 he suggested that I try Rituximab......this was not available on my private health insurance but he said he would apply for treatment through the National Health Service at Norwich University Hospital. After three repeat applications I was granted Rituximab treatment in December 2010. Treatment was for two 1000mg doses of Rituximab 15 days apart.
I am 70 yrs old and was not looking forward to this treatment but as it is the only product with any positive reports I decided to go for it !!
I was treated in the Rheumatology dept at the Hospital as a day case...arriving at 8.30 and getting all the usual checks plus a 1hr pre med with paracetamol, sickness pills, antihistamine and a Methylprednisone infusion. I was then started on Rituximab very slowly up to a maximum drip , as I had no side effects, which took 4hrs. The second infusion on 29th dec was exactly the same process but much quicker as they could speed the infusion rate.
At the moment I feel fine but have been told I will not know of any benefits for about three months.
To mention my symptoms....Difficulty walking and cannot stand without holding onto something or someone. Balance is the worst of my problems but added to that I have lost all muscle and feeling in my legs below the knees, some feeling in my fingers and have bladder and bowel problems.
Any questions anwered.........Regards Mike