It was my 2 year anniversary of being diagnosed this week, not the sort of anniversary you expect cards or chocolates for but I certainly never expected to be here 2 years ago!
I've had a massive flare since early september, I was on 25mg mtx and enbrel but missed two doses as I got an infection on holiday. On the day after we returned from holiday my mother in law died very unexpectedly, she was 62 and it is only 18 months since my father in law also died very suddenly at 60. The following day my gran died. This, the infection and a back injury caused a huge flare. My consultant took me off enbrel at the end of sept as he felt it failed, my RA nurse disagreed. I was switched to humira and immediately had an allergic reaction so I was changed to golimumab and due to start it mid november.
Just before starting the goli I got a rash and spoke to my rheumy nurse who got me in there and then to see the consultant. My CRP was 220 and I was diagnosed with Rheumatoid Vasculitis (RV) which means my immune system had started attacking the lining of my blood vessels. It is very rare and can be quite dangerous and only occurs in very agressive RA. I was put on a really high dose of steroids reducing over 5 weeks.
The goli immediately made me feel worse but I couldn't put my finger on why. As the steroids reduced my RA worsened and as soon as I finished them just before Christmas the RV recurred despite having had my second goli jab so back on the steroids. This time they made me soooo sick over Chritmas that I couldn't keep anything down. I saw the nurse on Jan 4th who got the consultant as I was so poorly, he says I have drug induced lupus, stopped the goli immediately and wanted me on rituximab. As it would take 6-8 weeks to start my nurse got him to agree I could retry enbrel. I had to persevere with the steroids and start enbrel again next week.
On Tuesday the RV got so bad and I was getting nosebleeds, I spoke to the nurse who got me in that day for a steroid jab but when she saw me she said there was no point, it wouldn't help and to come back the next day for an infusion.
I think the steroids are kicking in at last although neither the RV or the horrendous swelling have gone but I can move a bit better today.
Thanks for reading, sorry I've gone on so much, I've been feeling at bit sorry for myself and everyone one on here seems so lovely and supportive from the things I've read.