Hi everyone, I just came upon this board by chance while looking into my new treatment option - I used to post here often and had many friends but after lots of internet issues lost touch.
In case you don't remember me I'm now 28, from the UK and have lived with Still's Disease since the age of 14. I'd been on Enbrel & Cyclosporin for many years with much success but the past year or so we've had to try alternatives - I should be starting Orencia in the next few weeks and haven't found much information about it so far - not so many people on it in the UK apparantly. So any advice would be much appreciated.
Ps. I tried to update my signature but I get redirected to another site
Welcome back, Moonie :)Hi Lorrie, thanks for the welcome back!
And thank you Gale for letting me know your experience with Orencia. I'd been on Enbrel & Cyclosporin for 7 years when the Cyclo started to make my Kidneys fail. We tried replacing that with Azathioprine and Mycophenolate, tried Anakinra - but none of these have helped or have had terrible side effects. So even though the Enbrel still works for me to a point, we are switching to Orencia and Methotrexate. I've been told that it has a similar mechanism to Cyclosporin and the Ig therapy I had years ago so he seems pretty hopeful. I got my hopes up after reading about a 73% success rate but this doesn't apply to me, since Still's Disease is quite different.
They are planning on starting me on 500mg fortnightly, as I weigh under 60kg. It's good to hear that there are no side effects in your experience. I haven't had any with other biologics. I too seem to build up resistence again the meds I take, they work great at first and then not so much - I didn't know that Orencia was known for this so I will mention it to him. Just waiting for my letter from the ward to let me know when to start!
I hope you were able to find something more suitable for you after Orencia?
Best wishes
Moonie x
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