Thought I’d start a thread about
this as it may be helpful to anyone else starting or thinking about
taking Tofcacitinib/Xeljanz (I’m in the UK and they don’t seem to call it by the trade name here).
I’ve been in a flare for the past 2 months and a colonoscopy today which showed severe inflammation of the descending colon (I assume there’s more but the doctor didn’t want to go any further because I was so inflamed – really glad I spent last night drinking 4 litres of Moviprep and erupting like a volcano for just that lol). So my doctor and I have decided I’m going to start Tofacitinib. It was between that and Vedolizumab/Entyvio and we opted for the former because I live/work in Manchester which is quite a trek from my hospital in Oxford (I’ve considered transferring but the John Radcliffe hospital is one of the best in the country for IBD so I don’t want to give them up!) so it’s more convenient than travelling down for an infusion every 6 weeks. The drug was only approved for UC here in December and the doctors apparently only have 6 or 7 patients on it thus far, so I feel like a bit of a lab rat but we’ll see how it goes. I started on Prednisolone (for the first time in nearly 7 years) 2 weeks ago but it’s barely touched the sides. This doesn’t really surprise me as I lost response to it back when I was going on it all the time, although part of me had hoped that having such a long break form it would renew its potency – no such luck! On the plus side, as I’ve only been on it for 2 weeks and I’m already down to 30mg, my doctor says it’s safe for me to just stop and not bother with the taper so at least I won’t be taking it needlessly for the next 7 weeks; after getting off it all those years ago it turned out I have a jawline and I don’t want it to disappear again!
Annoyingly the pharmacy didn’t have Tofacitinib in stock so I can’t start today, it will hopefully be tomorrow or Wednesday. I’ll be starting on 10mg twice daily for 8 weeks. If things have significantly improved after 8 weeks, I’ll be dropping down to 5mg twice daily. If at 8 weeks I’m still unwell but have shown some signs of response/improvement, I’ll stay on 10mg for another 8 weeks before reducing. Or if at 8 weeks I’ve shown no response at all, it will be discontinued and we’ll go back to the drawing board. I’ll try to update this as and when to let you know how it’s going
If you’re interested in my disease/treatment history for context, here’s a good old thesis for you. I was diagnosed with Ulcerative Colitis when I was 18 way back in 2005 (I’m 32 now and it recently occurred to me that it won’t be long before I’ve had UC for half my life!). After a relatively breezy first few years on Mezalazine, Predfoam enemas and the occasional blast of Prednisolone, things took a bad turn in 2010 when my disease jumped from mild/moderate left sided colitis to severe pancolitis and I became steroid-refractory (even being admitted for IV hydrocortisone didn’t work). Infliximab worked like a magic bullet but I lost response after the first colon-saving infusion, so then I went on to Mercaptopurine and Adalimumab. Again, this worked and got me into complete remission with full mucosal healing in 2011 – for about
4 months! Then I flared again but I remained on the same drug regimen, and strangely went back into remission the following year (I still to this day don’t know what happened there). After staying well for another year, my doctor discontinued the Adalimumab in 2013 and subsequently I came off the 6MP in 2015 after getting shingles and developing some lovely genital warts that wouldn’t respond to treatment because my immune system was suppressed! (if you’re wondering, yes they did go away once I stopped the 6MP haha). I then stayed well for another 2 ½ years before experiencing a mild flare towards the end of 2017/beginning of 2018. A scope showed that it was only mild and after we increased my Mesalazine dose to the maximum, it cleared up without any further intervention (Vedolizumab was mentioned at the time but I was keen to keep the big guns in my back pocket until I really needed them). All was well again until new year 2019 when this current flare began, and sadly this one isn’t mild – so it’s time for those big guns!
It’s a strange place to be after 5-6 years of blissful remission. Even though I knew it wouldn’t last forever, I still naively hoped it would so I’m a bit gutted that things are so bad once again. But the fact that I was able to achieve such a perfect and long remission after being so ill in the past gives me some hope that I can do it again, and I’m grateful that I stayed well long enough for there to be new treatments available (in 2011 when it looked like the Adalimumab had failed, there was nothing else left to try, so I’m in a much better position now – assuming they work!). I’m also trying to mentally prepare myself for potential surgery should the treatments not to go to plan. Surgery is very scary to me, largely because I’m a gay (and single) man who engages in receptive anal sex and surgery would likely render that impossible. But at the same time there could be a lot to gain from losing this battered old colon. Both my grandad and uncle had bowel cancer (my uncle sadly died from it because he had learning difficulties and didn’t report his symptoms until it was too late). That coupled with my UC dx means I’m convinced I’ll get it eventually so I’d rest easier if I took those odds away.
Anyway if you read all of that then well done - even I'm bored of me. I’ll shut up now