Been off work since March with first flare up since diagnosed in 2010,I had a bad bout of depression with it also, during this time I found this website, which has helped tremendously, I know most of you have the more serious forms of the vasculitis and my thoughts are with you all, I have joined a gym and I go 3x a week, the manager has designed a exercise program that suits me with my arthritis. I have been talking to a counsellor who has referred me to a pain management clinic which I would have thought this would have been done at the beginning of the diagnosis. From the start I have been very naive about everything and felt I had no where to turn to. The depression has knocked my confidence and I need to build that up. I have weaned myself off my steroids and anti depressants and slowly lowering my methetrexate, I read an article in the daily mail another drug that is more effective (will get back to you about the name of the other drug, do not have the article with me at the mo, hopeless I am). People have commented on my appearance already ie losing weight, face is not puffy and less tired which has lifted my mood, I am not 100% , I know that will never, but I am trying to think more positively at the moment, speak to you all soon x
First flare up since diagnosis but now stable - Vasculitis UK
First flare up since diagnosis but now stable
Sounds to me like you are doing brilliantly! Well done! I know it took me ages to get off my steriods and it wasn't easy.
I wish you all the very best.
Sounds all very positive keep us posted.. Methetrexate and Azathioprine were not successful for John's WG... he is on Cellcept now.. it took 10 years for John to be weaned off Steroids...Good luck and take care
Glad that you found 'us'; I find just 'talking' to other people helpful.....After all all we are all 'in the same boat'. Best wishes.
AndrewT
I hope its the way you have put it, & the weaning myself off steroids & metho` is on your doc`s advice. I like John have found Celicept (mycophenolate), to be the bees knees, a couple of months after changing from Methetrexate , my bloods where much improved
Very best of luck Tony
Well done. I have been on steroids for 9 years without a break. I hate the moon face but I'm still on my feet so I put up with it. You were very lucky to find us so quickly. I went 9 years never having met anyone with the same condition. I felt a bit of a freak. Now I can chat and share problems and ask questions of people who really KNOW what its like.
Keep up the good work but don't be afraid to go back on the tablets for short periods if you need them. I am on happy pills at the moment after a bout of depression and they have given me my life back. Good luck. Keep well, Christine x