Ulcerative colitis - worried about medications

Sorry to hear about your situation. Have you tried diet at anytime during these years? I went on a Gluten Free diet almost 6 years ago and my bouts with colitis are rare unless I inadvertently eat something with gluten in it. It really isn't a hard diet to follow and many shack foods, are gluten free as well. Wishing you the best..

This is my first time postings, so excuse me for any mistakes. I was diagnosed with ulcerative colitis 23 years back. I was put on Asacol and prednisone. The beginning 6-7 years were really exhausting with flare up everytime the steroid was cut back. After I was introduced to azathioprine in 2003, my symptoms started getting better and the inflammation really got controlled. Since, then I had very few minor flares that got controlled with enemas. But, this year my flare up has really come back, with lot of inflammation in the entire colon, the doctor is thinking of switching me to a biologic Entyvio. I am really scared as I read about the side effects of this drugs, has anyone ever had experience with it? Any help is greatly appreciated.

@ssin20 Goo morning and welcome to connect we all care for each other and try to help. As baz10 said diet is so important with what you have . fruits and vegetables not much sugar and gluten free as much as possible ,no fried food or spices. At this point in history it is easier to get more gluten free food as there are so many stores carrying G.F. and websites you can order from . Research them and about colitis to see what you can do yourself. Good luck

I have been suffering with uc for 5 years. I have tried Humira, Entyvvio and now Sterlera. So far I'm not in remission.
What to do?

I had been on Entyvio (remission for 13 months, then stopped responding). Next biologic was Stelara, which just made things worse. I have been hospitalized 3 times in two months, dehydrated and put on IV steroids. I am currently on high doses of oral prednisone and just started Remicade (had first loading dose infusion last week). I will have the second loading dose on Wednesday and the third 4 weeks after that. If the Remicade doesn't work, I will be scheduling a proctocolectomy because I cannot stay on this roller coaster of hell. I have only had UC a little less than 4 years and it has escalated to pancolitis. My advice would be to talk to your doctor constantly and stay on top of things. Sometimes the biologics take several weeks to work. I have noticed a slight decrease in symptoms since starting the Remicade, so I am almost hopeful.... The prednisone is the worst for me - I shake constantly and I am miserable. This disease has ruined my life. I wish you the best and I hope and pray for a cure for all of us suffering with this unpredictable, debilitating disease.

I may not be the best to answer this but….currently I’m still on Entyvio & it worked amazingly (the light went out!). No side effects of any kind! However after 10 months I’ve had my 1st flare. Working w/ dr to get it under control w/ additional meds (hoping to stay on Entyvio). Hope it gives you as much relief as it did me….but for longer.

Good evening. I have UC for 18 plus years. Took numerous medications from remicade to Stelara currently on Xeljanz 10 mg twice daily. Which worked very good. Unfortunately my insurance made me go down to Xeljanz 11 mg ER. After a few weeks I am back in a flare. So back to prednisone and Xeljanz 10 mg twice daily. Drs are concerned that I might not have the same response that I originally had with the Xeljanz. Has anyone experience the same thing? Thanks

@jjob73, welcome. I moved your question to this existing discussion about UC:
- Ulcerative colitis - worried about medications https://connect.mayoclinic.org/discussion/ulcerated-colitis/

I did this so you can easily connect with fellow members like @mauionmymind @dval @ejlouboutin16 @baz10 @ssin20 @johnson53rl who are dealing with ulcerative colitis and talking about medications. I'll also tag @trying1975 @candrgonzalez who have experience with autoimmune conditions and taking Xeljanz (tofacitinib).

Did your doctors explain why they think your response to Xeljanz (tofacitinib) may not be as good this time?

It’s started off well until my insurance made me go down to the 11 mg ER pills. Not as effective as the 10 mg original pills. Hopefully it works again.

My Dr said it “ might be hard to catch lightning in a bottle “ twice. Meaning since it worked then had to take a lower dose it might not work as well again.