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Ulcerative Colitis
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Posted 5/28/2016 2:01 PM (GMT 0)
1. How long did it take you to maintain a stable remission?

2. Did you have set backs along the way?

3. Did you need to add anything to achieve remission besides the remicade?

4. How long have you been on it?

5. If you are on it but not in remission yet how long have you been trying for remission? Is it slowly healing you? And how long will you give it before moving on?

Thanks guys!!
Posted 5/28/2016 5:53 PM (GMT 0)
Thanks Alice! Regarding your increased frequency and dosage...you say you would go back to baseline. What were the determining factors behind that?

I know we are all different but so are our GI's so I am curious as to how others handle things ;)
Posted 5/28/2016 9:37 PM (GMT 0)
1. How long did it take you to maintain a stable remission? 1-year

2. Did you have set backs along the way? Nope. Still 5mgs per kilogram every 8 weeks.

3. Did you need to add anything to achieve remission besides the remicade? Lialda + rowasa + 6mp + remicade +prednisone

4. How long have you been on it? 2.5 years

5. If you are on it but not in remission yet how long have you been trying for remission? Is it slowly healing you? And how long will you give it before moving on?

I'm in remission. It was slow steady healing for a complete year to achieve remission. 60-ish percent of uc patients that try remicade receive an improvement in their symptoms. 30-ish percent (of that initial 60-ish percent) go on to achieve remission within a year of starting remicade. Not everyone achieves remission on remicade, some just have an improvement in their symptoms.

I'm just on remicade to maintain my remission.
Posted 5/29/2016 7:36 PM (GMT 0)
1. I was very sick when started it i I had major improvements overnight
my colitis was not active in my scope in jaunary but I was still having symptoms
Now, it looks like its CD so I dont think I was ever in remission
but I am feeling pretty good

2. after a few days I started regresssing, giving my second dose early and doubled helped a lot

3. I was on IV steroids at the time, and I started imuran

4. one year

5. I have seen drastics improvemnts, the before and after c-scope pics look like they came from a differnet person. I am not ready to call it quits becuase I am scared I wont find something that works and I am able to function as I am right now

hope this helped,
Posted 5/30/2016 11:12 PM (GMT 0)
1. How long did it take you to maintain a stable remission? about a year and a half

2. Did you have set backs along the way? Nope

3. Did you need to add anything to achieve remission besides the Remicade? I was originally on 6mp in addition to the Remicade but that combination was too harsh for me and started causing foot neuropathy which is a rare complication. Right now I am maintaining my remission with Remicade and Apriso only.

4. How long have you been on it? 5 years

5. If you are on it but not in remission yet how long have you been trying for remission? Is it slowly healing you? And how long will you give it before moving on? I actually gave myself a two year timeline. If it didn't work, I was going to opt for surgery. I've had this too long and have tried everything with little to no results.
Posted 5/31/2016 12:36 AM (GMT 0)
1. approx. three years; improvement was constant but slow.
2. Had a few flares from time to time. Was prescribed cortisone ememas until flare was under control again.
3. Kefir, Asacol, Dicyclomine, Clidenium, and ememas
4. since 1997 I think before it was officially approved for treatment of UC.
5. Once again I'm in remission!!! Before my insurance forced my doc to half my dosage, I'd been in remission over 5 years. Recently got back on my max. dosage and am doing great again. I'll stay on Remicade as long as I possibly can. It works for ME. Good luck
Posted 5/31/2016 11:40 AM (GMT 0)
I was on Remicade in 2009

1. How long did it take you to maintain a stable remission?
- instant

2. Did you have set backs along the way?
- after a while I started pooping mucus, we had to set the frequency of the infusions from 8 weeks to every 6 weeks and it was fine again.

3. Did you need to add anything to achieve remission besides the remicade?
- I think my GI gave me a shot of pred before each infusion but I didn't take anything else.

4. How long have you been on it?
- 2 years

It was very effectful for me however my 23andme test showed that I would have been more prone to cancer while on it. I'm glad I'm not taking it anymore however I really enjoyed my remission. I did a step back to Azathioprine which is unusal. But it worked. I'm glad my GI tried this option with me.
Posted 6/2/2016 9:59 PM (GMT 0)
1. about 7 months
2. I've had to deal with IBS and several other non-UC issues, but no UC setbacks.
3. I've stayed on mesalamine the entire time and required steroid and mesalamine suppositories for a few months to get into remission.
4. Almost exactly 8 years
5. I needed the extra help of the rectal meds to get me into remission. Remicade had healed almost all of my colon after a couple months but a few centimeters of inflammation remained in the rectum--hence the suppositories. My last scope showed clinical remission/clean biopsies.
Posted 6/3/2016 1:44 AM (GMT 0)
1. 9 months on Remicade but haven't a seen solid remission yet. I had 6 months with normal bms and no symptoms but didn't have a scope to know if it was true remission

2. I've had one major setback. I think it was a result of using stool softeners after major constipation from pain killers used during a hospitalization for un unrelated issue. Took me 3 months to get back to normal

3. Added azathyropine but just stopped it this week due to low wbc count. It really helped.

4. 9 months

5. Willing to give it at least a full year.
Posted 6/3/2016 11:32 AM (GMT 0)
1. on the second loading dose :)
2. only set back was we tried to get me off of azathioprine but started flaring again. they put me back on aza and no problem since then.
3. azathioprine
4. 3 yrs
5. does not apply
6. remicade and aza gave me my life back. I rarely think about UC anymore.
Posted 6/3/2016 11:58 AM (GMT 0)

TotesMagotes said...
1. How long did it take you to maintain a stable remission?

2. Did you have set backs along the way?

3. Did you need to add anything to achieve remission besides the remicade?

4. How long have you been on it?

5. If you are on it but not in remission yet how long have you been trying for remission? Is it slowly healing you? And how long will you give it before moving on?

Thanks guys!!

1. I had been in a raging flare for 5 years, ever since I was diagnosed. I started improving after the second loading dose, and continued gradual improvement over the first year. I'm not sure I actually recognized remission at first because I'd never experienced it before, but for sure I was in a stable remission at six months. I had a colonoscopy about 2 years after starting Remi, and it showed complete healing.

2. No setbacks until the past two months. I've started having much less solid stools.

3. I was on Aza when I first started Remicade; my doctor took me off when the stats started coming out about the combination therapy being associated with lymphoma in some people. Remission didn't change when I got off the Aza. (I had been on it since before I started Remi, and it never did anything for me.)

4. I had my first dose in March, 2006. So just over ten years.
Posted 6/3/2016 2:52 PM (GMT 0)
1. I had immediate response to remicade so I would say few months

2. Setback in 2013 but just bad luck not remicade's fault. Had pancreatitis followed by c-diff followed by bad flare each requiring hospitalization. Flare was raging proctitis and I had one more "simmering flare" of proctitis this past winter. Required prednisone but no hospital.

3. Because of events in 2013, I now get infusions every 6 weeks and I will use canasa if I think I need it

4. Initiated Fall/winter 2009

5. N/A
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