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UC "burns itself out?"

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Posted 3/17/2015 6:13 PM (GMT 0)
Ha, ha, ha, me too!! I almost started laughing at the GI when he said that because I was like....."What?" I keep telling myself that I misunderstood him. He never even talked to my hubby...so heck I could have heard anything lol. I mean seriously, what GI would tell a UC patient to go off meds even if they have been in a long remission!! Geez....
Posted 3/18/2015 12:52 AM (GMT 0)
Wow Lonie! I hope you are a success story with this. I also heard this burn itself out theory but I put it in the urban legend catagory like the tooth fairy and pots of gold at the end of rainbows.
B
Posted 3/18/2015 1:28 AM (GMT 0)
Lonie...awesome all looked clear! hopefully, he took biopsies throughout?

Strange he told you to stop the Pentasa...it's a low dosage with probable positives to stay on it.
q
Posted 3/18/2015 2:05 AM (GMT 0)
I have heard of this in different ways:

"..How long will IBD last? IBD is a lifelong (chronic) condition. A few patients find their disease becomes milder (“burned out”) after age 60, but many do not..."

University of Michigan


"...Ulcerative colitis characteristically waxes and wanes. Many patients experience long remissions, even without medication. Ulcerative colitis may mysteriously resolve ("burn out") after a long history of symptoms..."

Medicine.net

"...The disease can burn itself out after a period of time in some people..."
Queens University Ontario

There are many similar, vague references to this which I've seen in different articles throughout the years.

Please share any specifics - the golden ticket on how to get there would be appreciated

lol
Posted 3/18/2015 5:31 AM (GMT 0)
It seems to have happened to my father. Suffered from it from his 35-40s, then it faded away (he is in his late 60s now).
Posted 3/18/2015 12:14 PM (GMT 0)
Sign me up! :-)
Posted 3/18/2015 1:24 PM (GMT 0)
Quincy -- he did take biopsies, so I'm anxious to hear the results from that. The original GI that dx'd me was so much better to deal with. I'm sorry that I had to switch insurance that left me with this new GI. Even our pharmacist can't figure out why he switched me from Pentasa to Lialda because he said they are both mesalamines.

Still taking the Pentasa because it was so expensive and I had a lot of it. Now he says to stop taking meds? Well, my next appointment will be interesting! Possibly my UC did burn out...the rest of my life has been odd, why not add this to the list, lol!! :-)

Posted 3/18/2015 5:36 PM (GMT 0)
Well, if the definition of burning itself out is becoming milder (aka)limited to the rectum, then I'm in that category, but I'd never stop my meds to see if it's in fact true.

Burning out doesn't mean it won't return in my opinion...

The cellular architecture of your biopsies throughout the years would tell a story tho.

Keep us posted when you get them. You'll be a poster UCer for that term.

q
Posted 3/18/2015 5:40 PM (GMT 0)
I've had normal scopes since 2008. No inflammation whatsoever, but scarring from previous ulcerations. I'm too chicken to go off Remi, though, because I was so very sick before.
Posted 3/18/2015 6:08 PM (GMT 0)
I've heard this mentioned several times over the years on the forums. There was a study in one of the threads showing much milder disease in you old fogeys compared to us youngin's.

Hey, one good thing to look forward to with old age, hopefully.
Posted 3/18/2015 6:13 PM (GMT 0)
ha, maybe it's because our hormones go all to crape and we just have a don't care about anything attitude because family and friends die and we're all alone.

q
Posted 3/18/2015 7:42 PM (GMT 0)
I think Quincy is right. The older I get the more "I don't care attitude" I get. It is what it is....well, most of the time, lol.

I'm with you Judy; I was so sick when I was dx'd, I'm too chicken to go off meds entirely. It took me two years for me to trust my other GI that I was okay to discontinue Remi. Who knows what the future brings, but I still think staying on my present meds is the way to go.

Thanks to the OP for posting this topic!!

Carol

Posted 3/21/2015 2:38 PM (GMT 0)
I had thought/hoped that was the case. For over 2 years perhaps longer, my timeline feels a bit off) I wasn't having any issues. I went for a colonoscopy in May 2013 and the doc said "if I hadn't read your file, I wouldn't even know you had UC (thats how "clear" I was) I was only taking 1 lialda a day.

The flare up that started right after Christmas and that I think is finally subsiding (2 + weeks without blood and stomach cramps/pains have definitely decreased) kind of brought me back to the harsh reality that this can re-occur at any time.
Posted 12/5/2016 11:00 AM (GMT 0)
Hi,

I'm bumping up this old but interesting post from 2015.

I'm into my 4th year of remission now. I'm on 150mg of Imuran per day with no symptoms. My GI said the very words that are in the title of this post to me last week that we should consider the possibility that "my disease has burnt itself out". He figures to eventually stop or cut down my Imuran dosage in the next 12-24 months.

While I'm thankful for 4 years of no symptoms, at the same time I'm a little nervous about coming off a med that has worked so well for me. I enjoyed reading this post and I'm just wondering whether other people came of Imuran and then did their symptoms return or did they indeed remain in remission.

I know this topic is controversial so I don't want to induce a "UC can't burn itself out / Oh yes it can" debate. Just interested in hearing about anyone's situation who was taken off Imuran by their GI because they had been symptom free for so long and what was then their experience of such withdrawl.

Cheers,

D
Posted 12/5/2016 12:45 PM (GMT 0)
I was in a 2 year remission on remicade and 6mp (very similar to your imuran) and at my doctor's recommendation, i quit the 6mp (a slow working med which takes months to exit the body). I flared 6 months later, and have been fighting this flare for about 6 months. I've reintroduced the 6mp, plus lialda and rowasa and am trying to taper down prednisone (after several failed attempts).

Not to say that would happen to you, but it did to me ugh. Something to consider... changing what's working can have repercussions...
Posted 12/5/2016 12:54 PM (GMT 0)
Thanks for your response iPoop.

Were you still on Remicade when you flared? Do you think 6mp is now working less well for you second time around? Did you have a c-scope and biopsy before your GI decided to remove 6mp?
Posted 12/5/2016 1:15 PM (GMT 0)
Yes i was only on remicade when i flared.

Yes, prior to removing the 6mp, i had a scope and i was in a histological or deep remission, no signs of active inflammation visualy or in biopsies.

Is 6mp working better or worse this time? I don't know the real test is getting off of pred. I added back the 6mp in September and am at the 3 month mark back on it, and I've been able to cut prednisone from 20 mgs to 10mgs over that time. It's been a bumpy road, but in retrospect i might have been tapering the pred faster than i should've. As 6mp/imuran are very, very slow working.
Posted 12/5/2016 3:33 PM (GMT 0)
That sucks ipoop... to think you've finally licked it to getting kicked back into a flare.
Posted 12/5/2016 5:31 PM (GMT 0)
The mistake is to believe it can burn itself out.....period. Remission is just that....a disease maintained at a calm state.

Besides....I'm huge on the point that some don't recognise early symptoms or there just aren't any symptoms with simmering inflammation.

Damo....what you could do is get on a lower dosage 5asa oral / and rectal regimen to keep things covered at the very least. But to go no meds.....it would only last until the next tipping point to push things to the new active level.

Your call.

Is your bloodwork iffy on the 6MP?

q
Posted 12/5/2016 11:56 PM (GMT 0)
Anecdotal from work colleague:

Pan colitis early 20s. Treated in hospital with IV steroids, hard to settle but it did and went into remission. No issues for 10 yrs, on Asacol and Imuran over most of that time. After about 8 years taken off Imuran, then off Asacol. Had 10 year follow up scope recently (UK guidelines are 10 year follow up scope for anyone who had pan colitis even if not needed treatment since) and told that there is active UC visible on biopsy which surprised him as he is feeling no symptoms. Now back on Asacol, I'm not too sure though if went back on Imuran too.
Posted 12/6/2016 9:12 AM (GMT 0)
Thanks for the replies. Very interesting. My GI was saying that he sees an increasing number of cases now where UC is burning itself out in his patients - thinks this happens more with people from their mid to late 50s. I'm grateful for the remission that imuran has given me but if there was a reasonable chance of successfully getting off this I'd still want to give it a go.

D
Posted 12/6/2016 9:49 AM (GMT 0)
Marauder93, I have UC with rectal sparing and have since diagnosis. I am not one of the three categories you mention, for what it is worth. I was diagnosed as an adult, I don't have fulminant disease (I have mild colitis) and have never needed rectal meds. My GI didn't know what to make of it and didn't say anything other than he's seen it before and it can sometimes initially lead to a mis-diagnosis.

On the burn-out question, I know a few people who've gone into spontaneous and very long and continuing remissions. Is that the same thing as burnout?
Posted 12/6/2016 6:38 PM (GMT 0)
Something to look forward to as I get older...lol! I am so scared to get off of the enemas...I don't know what I would do with all of the time I would save not to mention the space in my house that would now be freed up with those huge enema boxes :)
Posted 12/6/2016 7:00 PM (GMT 0)
HateUC ...what's the regimen of the enemas?

I have no plan to go off them, and know my butt would be in total dire straights without them.

q
Posted 12/6/2016 9:18 PM (GMT 0)
Hi Q, no plans to go off them anytime soon unless some cure comes up. LOL. My butt would go haywire with one night skipped. I do them every night and have been for years.
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