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Anyone have any luck on immunomodulators?

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Ulcerative Colitis
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Posted 9/9/2013 9:16 PM (GMT 0)
Anyone have any luck on immunomodulators? Is there a high success rate? I think this is the next step for me. I'm worried that I will be vulnerable to getting sick especially if I am around people who are sick. And is there anyone out there who has achieved remission for a long period of time on these?
Posted 9/9/2013 9:39 PM (GMT 0)
took 200 mgs of imuran for a year...no luck
Posted 9/9/2013 10:21 PM (GMT 0)
I started Imuran in April at the same time as a 9 week course of pred.

I came off the pred with no problems and have had no issues since - solid remission. No side effects either.

When I first started I was also concerned about getting sick more often but that soon passes - I feel great, better than I have for ages, no colds, infections - nothing!

I get monthly blood test to make sure everything it ok, and what can I say? So far so good! Enjoying being back to normal!
Posted 9/9/2013 11:53 PM (GMT 0)
I took Imuran for about 4 years. Now it doesn't work anymore. I am tapering dose, was on 200mg 3 months ago, now on 50mg. Will stop next month.

But when I started, it was a godsend. I started along with Colazal.

If you go that route, make sure to do CBC and liver function before every dose up.
Posted 9/10/2013 12:04 AM (GMT 0)
I have been on Imuran for 17 years, the last 10 on only 50 mg. I also take apriso, used to take Asacol...and now had a bad flare after last colonoscopy. I would say that the 2 kept me in remission fairly well, though often had a little bleeding but not the 24/7/365/6years chronic pain! At higher dose I did get odd occaisional rash, and anything infectious really took me out. For my 40th birthday party went out to dinner and we all got...food poisoning! Oh, rapture! everyone else was good after 12-16 hours but I could not even keep a sip of water down for almost 3 days. I had a cold that went on and on and on and went into my hears and my hearing was affected and it was draining out my eyes...ugh eyelashes all glued together in the morning. I wash my hands A LOT. I try to stay away from sick people. I work at home now so that helps a lot.....I do worry about long term effects of this med and would like to go off it, though I am on a fairly low dose. THis med though has been around for a long time so it has an established track record (good or bad..) I also do probiotics making my own soy yogourt with several varieties (In separate, sterile containers) and am now increasing fermented foods including tempeh, home made kraut, miso paste...will see how that goes. Make sure they check your liver enzymes- I was on a high dose....think was around 150 and it totally borked my liver enzymes.
Posted 9/10/2013 12:42 AM (GMT 0)
2013,

Another immune modulator you may want to do some research on is: LDN, low dose naltrexone.

There's a post on it on the UC Resources page.

It's cheap, has almost no side effects, and put me in remission.

Posted 9/10/2013 1:58 AM (GMT 0)
I have been on 6mp for a few years and I've been in remission for quite a while. I think it's working for me. I haven't gotten sick at all either, which I am surprised about because i used to get sick fairly often.
Posted 9/10/2013 3:46 PM (GMT 0)
I've been on generic Imuran for...I guess 4 years now. It works fairly well, with a low rate of side effects for me. I also don't seem to get sick any more than I used to.
Posted 9/10/2013 8:06 PM (GMT 0)
It's worked well for me for 2 years almost-6mp.

I only take 50 mgs because I'm in the low end of being able to metabolize it. Unfortunately it really doesn't have a good track record for CD and UC though. It was definitely worth a shot for me to try before going to the third level of biologics even knowing that.

I had a terrible reaction taking it and pred at the same time, however.

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