Hello strangers, nice to be back with you all! I have had one hell of a ride with WG since last September and have a question after my long winded explanation :-)
Had been in remission and decided to use my long service leave and travel to Britain/Spain little did I suspect that after the flight I would get off the plane with swollen and painful joints that I had to deal with for the next 8 weeks, my friend called me 'hoppy' but it wasn't funny I was in so much pain and was trying to control it Imuran and codeine (I was only on Imuran and bactrim no pred) but when the purple spots raised there ugly head and I was I was in excruciating pain did I end up in a Barcelona hospital being confirmed that I was indeed having a WG flare and they weren't keen to let me leave.
Returned to Australia and my rheumy continued to try and control it with Imuran and 60mg of Pred (this did not work and I continued to progress down hill). After discussions, it was decided that it was either cyclo intravenous or Rituxan (Mabthera in Australia) as Rituxan is not on the government list I have had cyclo/pred every 3 weeks for 7 treatments now with bloods looking good but the sinus area is still bloody and crusting (but that has never changed whether in remission or not).
So here is the question, after all this cyclo treatment my rheumy has said after the 8th one next week he still considering now getting me on a sponsorship program to have rituxan infusions....is this really necessary when all bloods are good or is this is a way of keeping WG in remission? Has anyone else had experience with treatment in Australia?
love to hear from you and I hope you all are keeping as well as can be expected.
Kat
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