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Ulcerative Colitis
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Posted 9/18/2011 1:28 PM (GMT -5)
OK.. I've been working on remission for quite some time since my diagnoses in July 2010. Was doing ok until I hit 5mg of Pred when symptoms came back. Currently these are my choices per my GI:


iv steroids, complete bowel rest
surgical resection of the colon
Remicade/humira

Doc is skipping 6mp/Imuran as he says it no longer practical for me as it take several months to take effect. I heard of others using Remicade to get into remission and then switching to 6mp. Just don't like Remicade due to side effects and it seem to stop working in 3-5 years. I heard of people being on 6MP for 15 years. Not to sure of IVs steroids would work. Seems the steroid helps with the inflammation but interfering with my colon healing.

My symptoms are mainly blood and mucous (sometimes red dust) more during the early morning 2-3am and when I get up. It painful to pass. No frequent/urgent BM during the day. BM are mushy. I actually feel quite normal during the day and been able to exercise 3x a week

So could anybody relate their experience to these treatment types? Is there any combo I haven't tried? Can't tolerate Asacol and Apriso doesn't seem to be working.
Posted 9/18/2011 2:00 PM (GMT -5)
Have you tried colazal? I had the same problem when I got to a low dose of pred. I had already been on pred for quite a while and I started 6mp and waited. I wouldn't discount 6mp/Imuran because they take longer to work, they do work quickly for some. I actually saw a doctor the other day who seemed to think Remicade was a better option than 6mp but he didn't explain why he felt that way. I would like to get off 6mp but right now, I am feeling good and I don't think it's an option. Have you considered the anitbiotic combo? I feel like I have improved since starting Pristiq antidepressant. I am not sure if it is due to the medication or due to the lowered stress level but in either case, something helped. How long have you been on prenisone? Are you stilll on LDN? I am not sure if bowel rest would help, if it would, I would definitely give it a try for a few days. When I was flared up badly, I barely ate anything and I didn't improve. Are your symptoms severe or mild? You could stay on 5mg if they are mild and start 6mp/Imuran and wait a month at the low dose for the 6mp to help (not ideal but it's what I did). I am not sure if Humira will be on option since it is not approved for UC yet.
Posted 9/18/2011 2:44 PM (GMT -5)
the prednisone didn't help my symptoms so my doctor added 6mp and remicade. the 6mp started working for me the next day. i started remicade about 2 weeks later. both seem to be helping me a lot. i'm still on the prednisone, too, so i don't enjoy being on all these medicines. i'd like to get down to none eventually.
Posted 9/18/2011 4:18 PM (GMT -5)
couple of other things to consider, insurance wise my insurance company would not have covered remicade without me trying Imuran.

Also, what if they up your pred and then add imuran and then taper you? Def get a second opinion, your Doc would!
Posted 9/19/2011 12:38 AM (GMT -5)
i agree w/beth75 - a 2nd opinion sounds in order. i would want to try 6mp before remicade/surgery. perhaps you could do the pred/bowel rest AND start the 6mp. my doc said it sometimes works in a couple of months - sometimes sooner and sometimes later. everyone is different...but you could give it a try. good luck and i hope you feel better.
Posted 9/19/2011 12:02 PM (GMT -5)
Typiaclly a GI will start you on maintenance meds and also on pred at the same time in the hopes that the pred will "bandaid" some of your symptoms until your maintenance meds kick in.

Pred by itself rarely leads to remission it's basically used as a bandaid to give some short term relief or as a booster until the maintenance med kick in.


Best of luck to you!
Posted 9/19/2011 7:38 PM (GMT -5)
Thanks for all the encouragement!

I found out over the weekend that I'm over doing it on all the steroids! Too much steroids is causing me not to heal. Skipped the Budesonide yesterday and this morning. I feel much better....less bathroom issues in a sense.

Just emailed my doc to let him know I'm responding the 20mg of Pred and I'm also going to try a Orgain Protein drink diet for 3 days to rest my bowel to promote healing. A bit sore in the lower left die but it's tolerable. Asking if 6mp is an option.

Maybe now the LDN will kick in..I think all the steroids were canceling it out!

Dosing is certainly tricky..just got to keep trying to get the right one!
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