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Ulcerative Colitis
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Posted 10/11/2017 4:29 PM (GMT 0)
Hi again,

In the last 2 years I have been dealing with GI issues. First it started out with C diff Nov '15 then lead to a proctitis diagnosis finally summer '16 treat w/canasa flare in the fall again then added cortifoam flare a few months later in '17, add Rowasa- helped tons then added 2 balsalazide 2x a day as insurance while in remission. Felt super duper March - September of this year. Flare again (fall time-once again) out of nowhere and now w/left side UC normal colon first 40cm due to Rowasa (doc still thinks UC not crohns) new inflammation mild-moderate 50-70cm. I am on prednisone wean which helped in the 1st 3 days. Now on 30mg weaning every 7 days by 5. I am not feeling hopeful that I can achieve a long remission. I truly thought I had this summer but now its higher and worse.
Doc says Humira if I fail again. I am starting to wonder if I should just consider entyvio now if I achieve remission with prednisone instead of going with just the 9 balsalazide/Rowasa and waiting for the next flare. I had 2 vacations booked back to back after being sick for 2yrs off and on and this flare started one week prior to the 1st vacation with no real warning. How can I ever plan anything in my future? I read all your stories and they don't sound great for people who can't get it together in 2 years. Maybe its because my disease is new and it was trial and error at first. I just can't live my life worrying about the next flare. Doc said Humira works faster than entyvio so thats why he mentioned that but maybe I should just go for entyvio if I get remission from prednisone this time. How many of you maintained remission on ASA's after prednisone.??? I am feeling blah about my future
Posted 10/11/2017 8:35 PM (GMT 0)
I didn't take ASA's (I'm a non-metabolizer), so went straight to Entyvio after mesalamine didn't put me in remission. I started Entyvio a year after my disease started. I've been on Entyvio for 6 months now and am symptom-free (well, pretty much, some minor stuff every once in a while). No real side effects, although I had body aches and tiredness for the last couple of weeks, but am hoping that was just due to it being time for my next infusion (had infusion #7 yesterday). Had a colonoscopy last month and visually there was no inflammation (my last sigmoidoscopy in Feb showed inflammation all through my sigmoid), so I'd say Entyvio has done its job for me. I haven't seen my biopsy reports yet.
Posted 10/12/2017 12:41 AM (GMT 0)
Generally, you cannot just start a biologic like entyvio when you're in a remission as there must be a clear medicinal need. If you're flaring and mesalamines no longer work then you might have a case.

Insurance often insists that you try humira before entyvio, you can ask yours and see.

Insurance often requires immunomodulators (6mp or imuran) be tried before biologics, you can ask yours and see.
Posted 10/12/2017 5:15 PM (GMT 0)
They are 5-ASA (mesalamine and ilk) ...NOT ASA (which is aspirin). Please dont mix the two....be clear in what write and what you use. Shorten something and those who have no clue will continue it.

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