Starting Tofacitinib/Xeljanz

I’m reading this thread with great interest. I was diagnosed 20 years ago and I’ve been flaring very badly now for the last 18months and just about had enough of it.

I have moderate to severe proctitis which just will not go away! I’ve stopped responding to pred, tried Golimumab which did nothing (but make me go a bit mad and gave me anxiety attacks). So I’m hoping if I can get access to Xeljanz if it may work, as it is possibly my last hope before having to consider surgery, which I’m really not keen on. However bad my symptoms are I want to try and keep my body in one piece as I can’t grow a new one!

I’m currently living temporarily in Sri Lanka so I don’t have access to my usual clinical support until I return to the UK, but when I get back I was considering going for private treatment in Manchester. How is your care at John Radcliffe?

Hope the new meds work out for you Warren.

limey said...
Another quick update from me, since going back to 10 mg twice daily I am glad to say that things are back to normal for me.
Very few BMs per day, no urgency and certainly not worrying about washrooms when I leave the house.
If life continues like this then I am happy.

Sounds like bliss!

P.s. hi mattsu, xeljanz is the only drug which worked for me. I also had a persistent severe proctosigmoiditis and nothing touched it, not even pred. Ive made peace with having surgery if it needs to be that way but obviously it comes with risks and a functioning colon is probably preferable.

Hi lopomme in the 4th week my dr sent me to see a surgeon because all his other patients on xeljanz were feeling much better within the first week and it did not seem to be helping me. Then in the 5th week I felt I was having less pain. Only after that the number of BMs started to decrease. By week 7 we could see my calprotectin coming down. After that it was a slow but steady improvement until my scope in week 15 where I was officially declared in remission.

Xeljanz seems to be working for nearly everyone that starts it. Has it NOT worked for anyone? Just curious. Worried my husband may be the first of this case 😞