I thought that the drug had been a miraculous cure as I’d not had an episode since the first treatment on 1st December then again on 15th December
I went to see my GP about the bad bloating and even told him maybe boastfully, that I think the Rituximab has worked and very quickly. How wrong I was/am
I awoke at 4 am and started to have the vulgar joint and bone pains & then the uncontrollable shaking BUT it has stopped now, around 8:30 am I stopped shaking and took some paracetamol and tramadol
I have emailed my GP.
Any advice on what I do now please, anyone ? I am still not fit to get out of bed but managed to go to the loo, in a bottle, as I was scared I would freeze.
At least this episode didn’t have me hallucinating nor talking to people who aren’t there so there IS an improvement.
The episode was shorted than I would have had prior to the treatment too.
I guess that when I feel up to it and able, I will
Call the rheumatology line & see what they say. I just managed to get myself some water so I’m very pleased at that as I was shaking so much that I couldn’t have held anyone to drink from.
Any advice would be gratefully read & digested.
I was told I had GPA/Wegeners but now the letters say Generalised ANCA + associated vasculitis and so I truly don’t know what I have. The specialist, dr Clarke, says that GPA just stays permanently yet I’ve read of others who have waxing and waning GPA.
Hey, looking on the bright side. I am at least able to write this & 30-40 mins ago that would not have been possible. Maybe the drug needs more time.
I need my prednisolone but it’s downstairs and I’m
Worried I will start the shaking off by going
Thanks in advance & sorry for the poor writing