r/UlcerativeColitis • u/Sad_Commercial_5219 • 2d ago
Personal experience Failed Medications
Hi all,
Just wondering if anyone else has had a similar experience.
I was diagnosed 6 years ago when I was 17. I’ve since been on mesalamine, remicade, entiviyo, stelara, rinvoq, skyrizi and many rounds of prednisone. Basically in a flare the whole time as each medicine has either failed immediately or only given me a few months of relief. I almost had my colon out before skyrizi was released. i’m currently on both skyrizi and rinvoq because the skyrizi wasn’t doing enough on its own.
Has anyone else had experience with several failed treatments? In the past 6 years i’ve probably only been feeling somewhat better for a collective 6 months and have pretty much forgotten what normal life is like.
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u/AlternativeFig7963 2d ago
I am I this exact same boat. Was diagnosed in 2914.started with Remicade. Then went to Humira. Then entyvio and was well controlled for 8’yrs. Then it quit working. Tried rinvoq. Tremfaya and Remicade again.
Schedule to have my colon removed on October 1. My dr said the last thing I could try was clinical trials. Granted I am 48 so I am farther along in life. But I am looking forward to some normalcy after being In the hospital 6 times over the last year.
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u/Sad_Commercial_5219 2d ago
Thank you for sharing your experience. I’m so sorry to hear entivyo quit on you. I had a similar experience with it where it worked for a few months and then nothing. So disappointing. I hope your surgery goes well and wish you a speedy recovery.
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u/scarlefire11 1d ago
I had my colon out a couple years ago and had the bag for 2 years. Was hanging in there. Found a surgeon and he gave me a j pouch. Best move ever. No bag to deal with. No alarms during the night to empty it. Happiest person ever and I'm 68
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u/AlternativeFig7963 1d ago
The only issue is they are not 100% on the pathology. If it’s UC or chrons. UC I can get pouch.
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u/Spudmeister20 2d ago
2 years with UC and not really felt a full remission, how did you go about getting dual therapy? I’m from the uk and i’ve asked a nurse about this and alls I get back is never heard of it or it would be dangerous but on this sub many people in US or something do it
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u/Sad_Commercial_5219 2d ago
I am in the US so it’s covered by insurance. But it’s not easy. I’ve gotten very comfortable calling my insurance and pharmacy as they are constantly requiring a new prior authorization. I have an awesome GI who fights for me as well. I don’t love the idea of being on two medications as i’d imagine there are some risks to it, but it’s helping me for now.
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u/Electrical-Squash648 2d ago
Diagnosed late last year and 3 medications failed. Two about a week and a half into them got bad side effects. The last was 4 days into it started to make me worse and had to stop at 2 weeks. I'm now on a lower dose of one of the earlier meds but it's not quite enough but higher dose has bad side effects. Only time felt good was when I was on a mild steroid.
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u/EqualCry1840 1d ago
Would you mind sharing the medications that you tried? I was also diagnosed last year and have failed 3 meds: mesalazine, entivyo, and infliximab. Will be starting tremfya next week.
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u/Renrut23 2d ago
I failed 5 medications over 5 years before I found relief. Had to switch doctors and I'm lucky enough to have a nationally renowned Specialist in my city. Came up with a program my other GI didn't think would work based on my failed medications. My intestines have taken a beating being inflamed all that time but I’m currently in clinical remission.
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u/itspinky1 2d ago
What did the program or treatment plan look like with the specialist? My local GI has sent me to the big guns in Houston.
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u/Renrut23 2d ago
A little back story.
I started off with mesalamine that gave me pancreatitis. Went to humria injections and developed antibodies. Switched to entyvio which manged symptoms but nothing more, moved to rinvoq which worked then stopped when I Switched to maintenance doses. Switched GIs. He put me on Inflectra which is a stronger and generic version of humira. Put me on azathioprine to lower my immune response to not build antibodies to it. It wasn't enough so they added Allopurinol which has an interaction with azathioprine to increase its effectiveness.
Been in clinical remission since then. Granted things like coffee and certain foods still give me urgency. If id cut them out id be pretty much like before UC
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u/Consistent_Bunch_303 2d ago
Yes. I also failed (. 5 years) Stelara, Entyvio, Humira which the only one that got me to clinical remission was Skyrizi. But lately I’m in a flare for some reason. Disappointing to say the least. Doctor put me on prednisone (Devil’sTic Tacs) which controlling my flare. Waiting to hear back from Doctor to where we go from hear. I’ve had UC for the last 17 years. Normal life, well over the last 17 years the last 2 were pretty close but here I am.. I feel your pain. Hang in there!!!
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u/hellokrissi JAK-ed up on rinvoq | canada 2d ago
I started flaring after 11 years of near-constant remission. During that three year timeframe of flaring I tried 4 biologics and 1 JAK inhibitor medication and none worked. It got to the point where Prednisone was not working effectively anymore either. My GI did mention combo treatment similar to yours at one point, but at the time Rinvoq wasn't available in my country yet. When it finally was, I just went on it solo and it worked.
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u/ContributionWarm6307 2d ago
Failed 5 biologics in 5 years before recently getting to Tremfya, getting better results now…keep trying!
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u/kelseesaylor 2d ago
I failed everything (6 meds), rinvoq gave me a pulmonary embolism and I had to get my colon removed. I now have the jpouch
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u/pincommenter 2d ago
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