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May try imuran, since LDN doing nothing for me now

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Ulcerative Colitis
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Posted 8/28/2012 9:17 PM (GMT 0)
I am allergic to all 5ASA's and keep flaring if I get below a very low level of pred. Was hoping that some combo of LDN, diets and probiotics such as Mutaflor would do the trick to keep me in mantenance, and had a med free spurt of around 10 months on LDN alone but have been on the precipice of surgery again as I am low dosepred dependent. Failed remicade and Humira, failed worm therapy, failed fecal therapy, and faied retarded rekease phosphatidycholine- and am inclined to only do surgery if its a matter of life and death. I think my quality of life on low dose pred is superior to what it would likely be with a jpouch frankly- but I know I cant goon forever and ever on low dose pred even though I feel no side effects. I think i am going to admit to myself that LDN has let me down and will give Imuran or 6MP a try.

My GI woud rather try that than try things like xifaxan or triple antibiotic. In the meantime I am trying to set up a surgery re-consult. Oh, I am also going to try and wrangle up a transdermal LDN rx and give it a week or two perhaps to see if maybe that makes any difference. I have no small gut inflammation, however, so absorption oforal LDN is not an issue for me.
Posted 8/29/2012 2:04 AM (GMT 0)
My GI lelt me try Xifaxan and it didn't help me much :(

I think 6mp or Imuran are a good option. It worked for me and I was pred depending. I personally think life with a pouch would be better for me than on a low dose of pred, I was so fat on pred. It made me depressed and lowered my already low confidence. I am so thankful to be off that stuff. I have to say, you've tried a lot of treatments! I think I would go for the 6mp or Imuran if I were you, otherwise, you could try a clinical trial. I think i'd also consult with a surgeon just to get a feel for what that's all about. You could even get a referral to speak to a patient who has lived through the surgery. I feel like that would be very useful for me because it's all such a mystery, these people are out there but we don't know who they are or how they are living but I bet you they are living like normal. The surgery is just such a large and longterm undertaking. it's a big committment.
Posted 8/29/2012 10:28 AM (GMT 0)
Notsosicklygirl- yeah, thanks for the moral support- indeed, I will probably give Imuran a shot at this stage, while soon doing a "refresher" consult with a surgeon (did one a few years ago, and it appears I need to see them more frequently to still have the "green light" to pull the trigger at a time of my own choosing). I am going to attempt transdermal LDN for a couple weeks, if possible, before totally giving up on LDN though. Pred, in anything below moderate doses, never caused me to feel any side effects. I realize that it's itoxic, but as far as feeling side effects, in low doses for me it feels like a wonder drug. imuran seems to have much more issues as far as feeling side effects, even though, properly monitored it s supposed to be a safe maintenance drug. It doesnt thrill me, but at this stage if it allows me to put off the bug S decision for another few months, what the heck.
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