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Ulcerative Colitis
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Posted 4/18/2022 4:46 AM (GMT 0)
I just want to thank everyone for the comments of support while I was going through my first transfusion. I’ve had 3 and will now go on to the sub cut injections. I’ve been off prednisone over a month. I had absolutely zero withdrawal because I followed advice given on here and cut down to 2.5, then half again. I also added budenofalk enemas which I think have helped keep me stable. I’m still getting the hot flushes though not as intense (maybe these were menopause and made worse by the pred idk. My anxiety is a lot better,although I think I’ll always fear the future. My symptoms are a lot better though I don’t feel like I’m in remission. I have no bleeding and no pain but I still have porridge like consistency stools . Sometimes they’re formed but lack bulk so this tells me I’ve still got inflammation. I also still have urgency. Hopefully it gets better. Im finding cabbage juice amazing and I’d urge people to try if they haven’t yet. Still having joint issues so I intend trying some MSM to see if that helps. Has anyone else tried MSM? My goals are now to try and counter any possible future side affects that entyvio may present. I’ve started using broccoli seed extract. Making sure I eat as clean as possible. I also try to do a minimum of 12000 steps a day. I think walking is the key to good health. I have a couple of questions. What is sulfasalazine and why wouldn’t my Dr have tried this before entyvio? Is it a immunosuppressants or mesalazine? Or is it a different type of drug. This was never mentioned to me.
Posted 4/19/2022 3:00 AM (GMT 0)
Sulfasalazine is mesalamine bonded to sulfa-- so that it hopefully dissolves closer to the colon. However, it can cause unwanted side effects, including photosensitivity to the eyes. It sounds like you're on a much better track now-- congratulations for getting off Pred!!!!!! That's really a BIG accomplishment. Try to stay positive, to relax, and avoid pushing yourself with heavy exercise goals. Best wishes for steady progress to UC remission; sometimes it takes longer to achieve than we would like. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 4/19/2022 3:04 AM (GMT 0)
I’ve been wondering how you were doing! That’s a great sign that you were able wean off prednisone! It is too early for you to be in remission on entyvio yet but I really think you’re headed there. Being able to get off prednisone was my first sign that I was heading to remission.

Sulfasalazind is another form (basically) of mesalamine. Others who know more about it will chime in. Old hat, I think?
Posted 4/19/2022 10:30 AM (GMT 0)
Good to hear you are improving. My advice is to not go down the road of trying to focus on counter-acting the side effects of Entyvio. This will promote and maintain anxiety on your part. Instead focus on continuing your improvements, enjoying life and reducing your anxiety levels. This will promote and maintain a healthy state of body and mind on your part.
Posted 4/19/2022 1:10 PM (GMT 0)
Glad to hear that you made it off of prednisone without any issues, that's an excellent sign. As another member said, it's too soon to expect remission since Entyvio is a slow starter.

Take care.
Posted 4/20/2022 5:50 AM (GMT 0)
Thanks everyone. How long would I be able to use the steroid enemas without any trouble?
Posted 4/20/2022 11:11 AM (GMT 0)
I used steroid enemas for almost a year at one point without issue.
Posted 4/20/2022 2:13 PM (GMT 0)
Glad you're off the pred and doing pretty well. Entyvio has a very good safety/side effect profile. I don't know why your GI wouldn't have tried sulfasalazine before Entyvio. Like others have said, it's similar to mesalamine, but an older medicine. You could try it if you feel you still aren't quite back to "normal." Good side effect profile. I think they have you supplement with folic acid while on it.
Posted 4/20/2022 3:17 PM (GMT 0)
For depression and anxiety I take John's wort. It's over the counter. I've always had depression and anxiety and after every surgery it got a lot worse. After my last surgery I took John's wort and it cut my anxiety down so much that I was able to return to normal within 3 days when it was 3 weeks before
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