Just an Update guys, I’m still in solid remission. I have been for about 5/6 months now. Dropped down on the Xeljanz/ Tof to 5MG twice a day (maintenance dose) last week and so far so good. The only...
Was in exact same position as you. In hospital with a severe flare on IV steroids, high dose tablets etc before. Nothing controlling the flare then was put on Xeljanz/Tofacinitib. Got discharged from...
Had exactly the same in January and I’m from the UK too. Short story of it, I was in full remission with infliximab for 3 years. My IBD team decided to take me off it due to high anti bodies with no...
Lovely messages guys. Thanks....
Everything still going well guys. On 10MG pred now so only got a few weeks left then off that. Been in full solid remission about a month now so here’s hoping the Xeljanz keeps me there long term...
Hey guys, always interested in other UC sufferers remission and how they are during it. I’m currently now recently out of a horrendous flare which i was hospitalised. Roughly 2.5 weeks now in full...
Yes currently on 10MG twice a day. I just received my blood results and inflammation levels completed down to normal now which is great. Only issue is my iron levels have dropped, so going in for a...
Took me 3.5 weeks to get in solid full remission with Xeljanz which is same class of drugs as Rinvoq. I was hospitalised with a severe flare and Pred/IV wasn’t getting me better, but Xeljanz finally...
Xeljanz is a J - inhibitor medication tablet form. Can combat flares and also acts as a maintenance drug to stay in remission long term similar to biologics ( infusions) etc. It has finally got me...
I don’t think you will get normal stools on the pred as you have dropped to such a low dose. Usually high dose 40MG plus should be hitting it. Hopefully your infusions are the things that turns you....
Update - 5 days in row of full solid normal stools. 2 x day normal consistency. No UC symptoms finally. Took me roughly 3.5 weeks on Xeljanz to get there, but 100% was Xeljanz in hospital that turned...
I’m exactly the same. In remission I can eat whatever I want, when i want, consume alcohol etc. My stomach is like any normal persons stomach without UC when im well. No food triggers anything...
I’m the complete opposite lol i lost a lot of my gym weight in hospital and love the fact my appetite is back and I’m packing on the weight again. That’s the only side affect i like about the Pred is...
For me i find when i been in a bad flare it takes me a long time to achieve it, especially if i have been hospitalised. But, once i get there and if I’m on the right maintenance medication combating...
Thanks for the positive feedback guys. Have had 3 days in row of full solid remission style stools. Going my normal 1/2 times a day now so I think I’m there now guys. I know my UC and it’s usually a...
@poopydoop, thankfully my urgency has gone now. Even if i feel i need to go, I can hold it and that’s been a few weeks of that. @sara, Honestly pred hasn’t got me well this time. In fact, I don’t...
Thanks guys. Yeh considering how unwell i was and in hospital, the Xeljanz has really turned me quick. I’m getting on with my life now which is fantastic, but you know what it’s like getting...
Guys, just wondering how long it takes to get into full remission on Xeljanz for some people? Been on it just over 3 weeks since coming out of hospital and symptoms have improved significantly, but...
Keep going Wayne. I was in hospital 3 weeks ago with a severe flare. 13/14 times a day. Incredibly unwell and seeing no light at the end of tunnel. 3 weeks later I’m home now recovering slowly. Been...
Update- still not quite in remission yet but only been on the Xeljanz 2 weeks but toilet trips are down to roughly 4 a day now. Usually 2 morning and sometimes 2 night so retaining food much better...
Thanks guys. Certainly not there yet and in remission at the moment, as I’m still seeing liquid stools at points but that’s usually the last thing to go once all the inflammation is tackled. But,...
Hey guys, just an update as been a horrendous last 2/3 weeks for me but feels like I’m finally coming out of this nightmare. Flare ended up getting out of control with blood etc, so had no choice but...
Yeh nearly 2 weeks on 40MG. Going to ring GP see if i can accelerate the Rinvoq quicker...
Honestly bloody despise this disease I really do. You honestly forget just how horrendous it is when you been well for so long. Even more so, frustrating that my IBD team are basically the cause of...
Awesome. Well Azathioprine kept me in remission for 4 years before i come off it and infliximab to, so hopefully i respond well to Rinvoq. Sounds like a wonder drug for UC sufferers...
How long have people been in remission for with Rinvoq? As stated on previous posts, i was in remission 3 years on Infliximab until my IBD team messed that up by taking me off it. Just hope this...
I know this is a maintenance therapy that supposed to keep IBD sufferers into a long term remission like Biologics, but does it actually turn people into remission who are actually in a flare? Or...
Fantastic. I do tend to respond well to maintenance Medication thankfully. Azathioprine kept me in remission 3/4 years before coming off it, plus like i say the Infliximab worked wonders too. Really...
Currently slowly going into remission after a month flare with Pred and I’ll be starting Rinvoq very soon so I’m really hoping this keeps me in remission long term again. Infliximab kept me in...
Thanks guys. Keep you updated...
Maybe that’s me reading it wrong then but that’s the plan anyway. Still angry they got me into this but got to move on now and hopefully this works for me...
upadacitinib (Rinvoq)...
Update guys. They going to put me on this new tablet form Biologic drug. Will try find out the name, but has been out a few years and meant to be excellent results for UC patients and fast acting....
Thanks. Already emailed my IBD team demanding they get me back on a Biologic treatment whilst this Pred kicks in. Thankfully, i have improved over the weekend and find myself finally turning. It’s my...
Had the sig moidoscopy guys. Very red and aggressive flare left hand side of colon. Further up its healthy so isn’t spreading but no wonder why I’m so unwell and it’s taking ages to shake. Looks like...
Try being in remission for 3 years on Infliximab Biologics, doing fantastic and then your IBD team decide upon themselves to take me off it due to antibodies build up and for me to then flare 3...
Not sure yet, but looks like will be some sort of Biologics. Have my Flex Thursday with my actual IBD doctor so will be having strong words telling him I’m not happy with how they have handled this...
Well i got a flex sigmoidoscopy Thursday and bloods i did the other day, so they just need these results to push for another Biological treatment so I’m getting somewhere at least. Doesn’t make me...
I will let everyone know how i get on next week. Will call my Doctor first thing tomorrow and get them to accelerate the need for me to get back on Biologics and make sure they contact my IBD team...
Oh and sorry guys my apologies, was every 8 weeks my infliximab infusions, not every 2.5 months like originally stated. Point still remains that I’m angry they abruptly took me off it and...
I was having zero issues whatsoever. I was getting my 2.5 monthly infusions and maintained perfect remission for 3 years. Blood tests etc always come back normal. They basically took me off the...
Pretty much mate. I have felt better tonight so clearly the higher dose Pred is working but I’m going to lie Wednesday even if better and say no improvement and demand i be put back on the Biologic...
Thanks guys. Had stern words with my IBD team and GP today as obviously not happy with the situation and they have upped my pred to 40MG for now. If by Wednesday I’m still not improving, i am to...
Thing is I usually respond to Steroids and it usually puts me in remission, but the issue was it kept coming back so i was dependent on it. This is why the Biologics was a game changer for me. From...
Hey guys, just a quick summary. 37 years old male from the UK, UC sufferer for roughly 12 years. Finally after years of being in remission, back in a flare, in remission, flare every 3 months or so...
Not to sure, but this has been my infusion since the beginning. Every 10 weeks i head to the hospital, get my bloods and infusion then come home. Worked wonders for me. I’m only on Mesalazine...
Hey guys, Just a quick summary of my current situation. I have been in long term remission now for nearly 3 years due to the game changing Infliximab (Biologics) in which i get an infusion every 2.5...
Cheers guys. There’s definitely hope out there for us UC sufferers, which doesn’t involve the harsh steroids route....
Hey guys, I posted a while ago about my journey on biologics in which I started taking early last year. I was far to reliant on Pred and was constantly in and out of flares every 3/4 months. Getting...
Infliximab has changed my life to. Nearly a year remission since I been on it. Haven’t had this long term remission in a very long time, so I know for a fact it’s the Biologics. I haven’t had any...