Today I went to see my two consultants (a Rheumatologist and a Respiratory doctor) who was very excited to tell me that they had the funding for me to have the above drug.
I have been waiting for over two years for the funding for this drug. Several times I was told no by the funding people even when I tried putting my case forward myself. I even went to my local MP who was not very helpful.
Of course I now have to wait for the result of blood tests for TB and Hepatitis B and C and in the meantime I will have to try not to get any infections before I can be given the infusion.
My diagnoses is Mixed connective tissue disorder with lung involvement and all the other add ons such as raynauds phenomenon, joint pains, hair loss and thinning, sjogren's syndrome, nodlues in thyroid glands, cerebral vasculitis and others.
At the moment I am on Prednisolone 10 mg for about two years now but I have been on a higher dose in the past and I have had all the usual drugs including Hydroxychloroquine and Cyclophosphamide. I always had bad reaction to most of the drugs and the Cyclophosphamide only made me feel better for about three months after the last infusion.
Just want to say my consultants have been brilliant in persevering with getting the funding for this drug for me.