Hi all,
I was diagnosed with granulomatosis with polyangiitis (GPA) last month after 6 months of testing / vasculitis being suspected and am waiting to be seen by rheumatology to start immunosuppressive treatment.
Those of you who were not in hospital when you were treated by rheumatology for vasculitis, how long did you wait and how did you cope in the meantime?
I understand that in its current state the GPA is not life threatening for me but it is now 7 months on (and 2 years after I was very ill and in hospital with what they now think was actually a vasculitis flare) and I am finding all of the waiting a bit frustrating. I was planning on changing jobs and moving this year but that has all had to been put on hold until I start treatment). I also keep developing flu like illnesses every couple of months which completely knock me out. Is this normal / a common experience before treatment?
I'm 24 and work full time.
Are you being seen at a specialist centre. Call the helpline and check. The sooner you are treated the less likely are long term complications. I would go to a specialist centre asap.
Hi Amy, I'm waiting to be a seen at the specialist centre at Guy's in London but the waiting time for an appointment (for new patients) is 6 - 8 weeks
Phone and ask to be put on the waiting list for a cancellation.
I did and the earliest they can fit me in is the 29th of November, but at least I have an appointment date now
at this point I guess another month and a half doesn't make a lot of difference