I started to get ill in January this year with a persistent cough and lack of breath. After 4 months of visiting the doctor I was finally referred to the hospital as I could hardly walk up the stairs without getting out of breath, I had lost 2 stone and was told by my GP that I probably had cancer.
I was in hospital for 2 1/2 weeks whilst I underwent numerous tests but was cleared of any cancer, but was told that I had Behçet's disease which was causing blood clots in my lungs, a pulmonary anurism and vasculitis in my lungs.
I was started off on warfarin, high doses of prednisolone and a 4 month treatment of chemo (cyclophosphamide) which unfortunately hasn't worked as my lung function is still really low.
I am now on azathioprine and have been for 2 months but just been told that this isn't working either as I'm still developing phlebitis and my lung function is getting worse.
My consultants (rheumatology and respiratory) have suggested that the last resort would be infliximab but due to changes in procedure my PCT are not authorised to issue me the drug as it costs £10,000 a year, but instead they have to apply to the Behcets centre of excellence in London for funding etc. Has anyone else been in this situation and what is the likelihood of me being allowed this drug?