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Off Imuran for awhile and I'm doing great

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Ulcerative Colitis
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Posted 4/26/2014 10:08 AM (GMT -5)
Just wondering if this has happened to anyone else. I started a bad flare Aug, 2013. With rectal meds, prednisone, and Imuran I was able to get into remission. This March I was hospitalized for a non UC related illness. They withheld Imuran so my body could fight off the virus, which it did. They dont want me back on imuran until I finish my antibiotics. I've been off of Imuran for over a month and my last blood test showed almost non existent levels. I've continued taking apriso and continue with rectal meds nightly and... I feel great. No urgency, no blood or mucus and fully formed stools. I'm wondering if I need to go back on Imuran if I'm doing well now? When I started the flare they said it was likely the apriso stopped working but now I'm wondering if it was the post partum hormones and not the apriso. Has anyone been on imuran or something similar, achieved remission and gone back on 5-ASA meds? Or is this just wishful thinking on my part?
Posted 4/26/2014 10:26 AM (GMT -5)
I've been med-free since surgery 15 months ago. The 5-ASAs are a joke for Crohn's and I don't want to be on immunesuppressants unless it's necessary, so basically I'm not taking anything. Given how random remission/relapse can be, it's not wishful thinking on your part. That said, if you'd rather be "safe", go back on the Imuran. It didn't stop you from flaring the first time, but maybe it might do so a second time. Maybe.
Posted 4/26/2014 10:59 AM (GMT -5)
I'm only on 5ASA...oral/rectal.

Yes, I think yours is probably related to the pregnancy/postnatal hormones.

If you're doing well at this time, that's awesome!

How long on the nightly enemas?

q
Posted 4/26/2014 11:09 AM (GMT -5)
There is often no rhyme or reason to this disease, and it's possible the treatment you received in the hospital has stopped the flare in its tracks, who knows! speaking for myself I wouldn't want to continue taking the Imuran....if it ain't broke dont fix it!

BUT, could it be possible that apriso isn't actually working as effectively any more? and might it not be a good idea to switch to another 5-ASA, just as a precautionary measure, as although you are good at the moment, it would be a shame if you flared and had to go back on Imuran again, because of this weak link...hope this makes some kind of sense, I am certainly no expert..I'm just bouncing ideas around really.
Posted 4/26/2014 12:12 PM (GMT -5)
Q, I never used enemas until the flare last August. I've been using sulfite free Rowasa nightly. My GI said I might be able to use it a couple times a week instead of nightly if I continue to do well but he wants to take things slow.

Poppie, the only other ASA that worked for me was Asacol. I was on it for over 10 years. All of a sudden started seeing undissolved pills in my stool so I switched to Apriso. Tried colazal and Lialda before but they made my UC worse.

I'd prefer not to be on Imuran. It's part of the reason I ended up in the hospital - I wasn't able to fight off the virus and just kept getting worse and worse.
Posted 4/26/2014 3:41 PM (GMT -5)
Sorry - dumb question here - but how come you are on antibiotics for a viral infection? Or did you have a viral infection and then recently came down with something else that requires antibiotic treatment?
Posted 4/26/2014 5:18 PM (GMT -5)
I had the same question Canada mark. I was having very high fevers, 103 and higher, migraines, nausea, hot and cold spells for 7 days before I was admitted to the hospital for 11 days. They ran every test in the book and all results were negative. So they said it was likely a virus that wasn't showing up on their tests. While I was in the hospital they pumped me full of different antibiotics because they had no idea what was wrong (basically they were shooting in the dark but worried because I was immunosuppressed due to Imuran and they were afraid there was an infection somewhere). I responded to one of the antibiotics they think. It could have also been the tail end of the virus so to be safe when they discharged me they had me take a course of the antibiotic.
Posted 4/26/2014 5:27 PM (GMT -5)
Luckily, through it all my UC didn't flare!
Posted 4/26/2014 6:28 PM (GMT -5)
That is a good question. Anyway, back to the original topic, I'm not a believer in Immunemodulators (such as Imuran) or biologics. If it were me, I would keep doing what you are doing, minus the Imuran.
Posted 4/26/2014 8:39 PM (GMT -5)
After my second clear colonoscopy in three years, I am tapering off of Imuran. I'm nervous but also really excited about the prospect of being free of it. My previous three flares were all brought on by pregnancy/postpartum hormones, too. But I wasn't on any maintenance meds at that time as my disease had previously been mild. I'm now on Asacol HD, and hoping that that will keep me in remission without the Imuran. If I were like you, off of it and still feeling good, I wouldn't be inclined to get back on it. Then again, I've been in remission for almost three years; some of the complete terror of flaring again has subsided for me. You might not be there yet. Whatever you decide, I hope you continue to feel good.
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