Sara14 it’s a long story. I’ve been stuck on pred for 18months+ every time I wean off symptoms return. Started Tofacitinib (Xeljanz) back in June after failing infliximab, had absolutely no response...
This would make sense sara14 I am flaring, well at least my recent calpro test says so. 1174 after my third loading dose of vedo. So went back on 40mg Pred. Now down to 15mg and just had my fourth...
This is very useful information thank you. I will bring this up with my team....
Hi all I was wondering if any one could help. I keep seeing my mezavant tablets in my stool. Somethings they come out whole sometimes they appear broken up. A simple google search told me it’s quite...
Oh I am still dealing with the moon face! Been on pred for almost a year. Finally off it now and I think it must have something to do with the smoking..... problem I have is that I quickly crept up...
You have summed this horrible disease up absolutely perfectly!!!...
Thank you for your reply onedayatatime99 I’m not going to lie I have enjoyed escaping my busy household for a few minutes of peace and quiet. Maybe there is something in that....
Hello I was hoping for some advice. I started Xeljanz 14 weeks ago after losing response to infliximab. I was taken off Azathioprine in preparation to start Xeljanz. Two weeks after stopping...
How are you doing MLP2060? Any improvement yet? Have you asked about rectal meds? I am now at week 14. Off pred and seeing a significant improvement this week. No bleeding at all a little urgency but...
I was taken off Azathioprine (imuran) two weeks before starting Xeljanz. Due to not being able to take both for risk of over immunosuppresion. That’s when my bleeding really kicked in! Going from...
Yes that’s right I’m in the UK, we don’t tend to use the brand names here. I was offered this or Xeljanz. I left the choice up to the doc. He said we should try the Xeljanz as if it worked would be...
Yes it’s all the UC nothing else found. I spoke to my consultant and he said the next option is vedolizimab. Hoping to start it in 4-6 weeks if funding is approved. He said that I could still see a...
Sara14 Doctor has perscribed more Budenofalk 2g once a day I believe this is the steroid foam. It worked when I first started using it but it doesn’t seem so effective now. I tried the salofalk foam...
Thank you all for your replies. It’s been very useful. I am also on the highest oral dose of mesalamine. I’m taking 4800mg Mezavant XL. Hoping something kicks in soon!...
Hello can I please get opinions on the best rectal medication for left sided colitis. I am currently using Budenofalk foam and it provides slight relief but I don’t think it gets up high enough. I...
This happened to me too!!! I was advised to go back up to 40mg Pred 7 weeks ago and it did nothing! Really unusual for me as usually it sorts me out fast. Hence why my doctor wrongly thought that my...
It’s great you are doing so well with it limey. Had my flexi sig this morning. As I suspected I still have moderate/severe inflammation from the rectum all the way up to the splenic flexure with...
Hi I am 13 weeks in to Xeljanz. So far for me it’s not great. Lots of bleeding and urgency. Although stool is now more formed. Calprotectin down from 407 in February to 206 in July after being on...
Write the book! I’d be interested however for me I’d be more likely to read a blog rather than actually purchase a book. I always like to read success stories....
Hello I’m so sorry you are going through such a stressful time. My UC seems worse in times of stress. But then of course the vicious circle begins. Where your symptoms add to the stress and...
Ribbon23 I’m sorry I have nothing to add suggestion wise but wanted to say I know exactly how you feel! This disease is a mine field! I’m constantly questioning what I might have done wrong when this...
Thank you ipoop its good to hear you are in remission. And I’m not alone with these symptoms. It’s very reassuring. My issue is the not being able to pass gas without the bleeding. I can’t remember...
Sorry when I say I’m almost there I mean almost well not back in the full one flare....
Notsosicklygirl yes exactly! This is the thing my improvement has been really good from where I was 8 months ago I was exactly as you experienced! So I’ve come a very long way. The Remicade was given...
I did actually ask if this could be a fistula/piles/abscess or something and she said they would all usually be very painful and mostly bleed with bowel movements and not also with passing wind! I’m...
Yes it’s me again lol! Still normal bowel movements. Just more and more bleeding farts! 🤦♀️ It get worse through the night! I asked the nurse today and her only theory was it must be the...
Momto2boys this is interesting I have the same situation with my dad. He is convinced he was diagnosed many many years ago and his medical records say he was prescribed Asacol. He continued to smoke...
Yes I had to come off Azathioprine in order to start Xeljanz. You can’t take them together. I have a suspicion that this is why my current flare went from bad to worse. I went from loose stools...
Yes I have failed infliximab (Remicade) currently 4 weeks in to Xeljanz seems to have lowered my inflammation markers but still experiencing extreme rectal bleeding unfortunately. I’m also on...
Thank you MariaMaria for your reply. How fast did you see improvements after starting 3-5 a day? I think I am going to give this a go as the more I read the more I find other getting relief this way....
Hello I wanted to find out if anyone had tried smoking to help with UC symptoms. I’ve done a lot of research on the subject and it’s widely known that there is a link. I gave up smoking 2 years...
DBwithUC this is a really good point thank you! I think when my body is playing up like this I kind of over think things and panic! I’m just petrified of ending up back where I was last year!...
Hi everyone looking for advice. Story so far. Diagnosed with severe left sided UC in August last year. Hospitalised and started infliximab seemed to calm everything down. Sent home with the usual...
Hello I have been on Xeljanz for just over 3 weeks. I too am experiencing worsening symptoms. Stool quality seems to be improving but bleeding is getting progressively worse! I was moved to Xeljanz...