I have adult onset stills disease went see rheumy last week an he's pleased with my bloods inflamation down but still on steroids and would like to take me off them so he said he's going to try apply for funding for anakinra he says we might stand a good chance due to all the problems an side affects of meds I've had and said that he will put he's concerned been on steroids 8 mths and have now ended up with insomnia and am cushingoid due to the steroids also I am about to be terminated from my new job that I should have started in Jan but wasn't able to. I have always worked full time so it's hard not only financially but also miss seeing friends and working does give you independence bit the Dr says he thinks full time would be to much and he thinks going back into banking would be to stressful. I have recently been getting a rash most nights and flu like symptoms then it goes and nothing there next morn which worried me as this was how I started with the stills Dr thinks it's been bought on by getting stressed about losing job. I also like most of you struggle with the fatigue just comes on and feel like I've been on a long haul flight but no holiday to go with it.
If anyone can give any hints and tips have got pip assessment this morning would be so grateful.
If anyone is on anakinra any advice would be great as I know we all different and react to drugs different but Dr says the only thing is the high risk of infections with it but he says it's still worth applying for just a bit worried because even though I'm not right I've come so far since xmas when my fella had to push me in wheelchair we were like lou an Andy from lil Britain not a pretty sight .
Look forward to any advice about pip or anakinra
Hope you all have a good day