Hi all after 6 months on steroids following a real bad time on Cimzia, I was advised was going on tocilizumab. So went to see Rehumy nurse beginning of October I was asked how I was doing, general chat until I pointed out I was supposed to be there for the tocilizumab. She looked confused then said she would nip in to see my specialist. She then came back said no problem letter was on his secretary's desk and I would be contacted in next 14 days to start on the new drug. The 3 weeks later I phoned Rehumy nurse to say not heard anything. She apologised said she would chase specialist up. 2 weeks ago received a letter advising me I attend Rehumy dept next Tuesday the 18th for the infusion. I though at last, having numerous flare ups, eating anything that stands still for 10 seconds because of steroids. However this morning I receive a copy of a letter from the NHS Trust. Thanking my specialist for his funding request dated 12.11.14 three days ago for the drug. It goes on to say they are considering his request, however it also states that should I receive the drug before consent is given then the hospital will not be reinburst for the drug. Is this just a paper excercise or am I going to be turned away on Tuesday. So as you can see I'm not happy.
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