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Flare on 6mp - considering the next steps

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Ulcerative Colitis
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Posted 6/8/2011 5:57 PM (GMT -8)
Hi all -

After 2 years symptom-free on 6mp I seem to be at the beginning of a flare, with going to the bathroom 20x/day, cramps, diarrhea and a small amount of occasional bleeding. My GI is having me do a stool sample test tomorrow to check for infection. However - if there is none I think he'd like me to do a short course of prednisone and start on remicade. I absolutely refuse to do prednisone again unless my colon is completely disintegrating or something and also prefer not to start on a new, next level up drug. Unfortunately i can't tolerate the 5-asas so cannot use any rectal meds, other than anusol suppository.

Anyway - i was wondering if anyone had any suggestions for other courses of treatment. I'd love to go to my GI with a few other ideas, other than what he has in mind, before switching to remicade. I'm currently on 50 mg of 6mp - in the past I had one episode of elevated liver enzymes when on a higher dose of 75 mg - I sort of feel like it might be worth a try to up the dose to at least try to get out of the flare. In the past I've tried using Bentyl for the urgency and cramps (no effect) and also probiotics (no effect either).

Any ideas? I feel like I've tried a lot and am too quickly cycling through my options.
Posted 6/8/2011 7:05 PM (GMT -8)
I am sorry you're going through this bklyngrl. I am in a similar spot where I am on 6mp but my blood counts drop too low when I take it so I can't safely stay on it and I need to figure out the next step. In your boat, there are a few things worth considering. If you get negative results (hopefully you have a bug - funny that we think that here, isn't it?), you could try antibiotic therapy. Someone posted a very hopeful article recently about an antibiotic combo of drugs that can help stop a flare up.

Here is a link to that:
http://www.nature.com/ajg/journal/v105/n8/abs/ajg201084a.html

Another thing you could try is upping the dose of 6mp as you said. if you liver enzymes get elevated, you could try adding allopurinol and lowering the dose of 6mp. I've been taking the combo for a while with good results but unfortunately my body doesn't really like 6mp and my blood counts were never high so lowering them makes them too low.

You could try alternative therapies, worms, LDN, fecal transplant, probiotics, diet... there are a lot of options but they all seem to have their own challenges. Worm therapy is expensive, LDN has low success rates, fecal transplant is most helpful is your gut is devoid of good bacteria... It is all so inidividual.

Diet doesn't seem to help or hurt me at all but some people here are able to maintaiin remission with diet alone.

Have you tried any rectal meds?

Posted 6/8/2011 7:28 PM (GMT -8)
I think you should try Cortenemas...they are a steroid enema and if you could try to use every morning and night that may help...

 

I would also go up on the 6-MP if you could . 50mg is a fairly low dose

my 10 yr old daughter is on 50 so it seems like you could increase.

 

What about switching to Imuran? LDN??

 

I would try everything before just switching to Remicade although I understand never using Pred again...I won't do that either.

 

Good luck and keep us posted

Posted 6/9/2011 12:45 AM (GMT -8)
Sorry to hear about your sudden flare.

Like notsosicklygirl wrote, "It is all so inidividual." For me the only medicine that really has always worked is prednisone. I did manage to accomplish a 3-year remission with probiotics years back. I've no idea why I went for remission for 15 years when I was around 30, maybe it was my diet, maybe something else.

We're a diverse group of individuals, and this site is a proof that many things work for many people. The main thing is to keep on trying.

All the best to you.
Posted 6/9/2011 4:25 AM (GMT -8)
bklyngrl,

What kind of diet are you on?

Which supplements are you taking?

IMO, I would recommend Transdermal LDN. I am a big fan of starting off with low side effects drugs before you bring out the big guns like Remicade, and others.

LDN is cheap, and most importantly has been proven very effective at  putting people in remission.

Although I must warn you, it's unlikely your doctor will be open to  prescribing it.

Anyway, if you are interested and need more info, I'll be glad to post it here for you.

Good luck, and I hope your flare gets better real soon.

Posted 6/10/2011 9:20 AM (GMT -8)
Thanks for your suggestions everyone. they were helpful when i spoke with my dr yesterday. He prescribed upping my dose of 6mp to 75 mg and also started me on an antibiotic, in case my tests come back with an infection. We won't know the results of that til Monday or tuesday but if they're negative i will go off the antibiotic and start on a steroid enema. Meanwhile, after just one night on the increased dose (and possibly the antibiotic, but I'm skeptical it's a bug) i am feeling somewhat better - so fingers crossed!
Posted 6/10/2011 11:46 AM (GMT -8)
      It sounds like your doctor is on top of things.   My liver and pancreatic enzyme levels went through the roof when my GI doctor increased the 6MP to 100 mgm.  I always took 50 mgm but it stopped working.  I was on it for seven years.  The next step for me was Remicade, which failed after the third infusion.  Tried Humira for three months...nada, became prednisone dependent and finally had a total colectomy with end ileostomy last June 28th.  Other than bone problems (thanks to prednisone..osteoporosis), I feel great! yeah

     Keeping my fingers crossed you find a treatment that works for you.  God bless.

Posted 6/10/2011 7:47 PM (GMT -8)

6 MP didn't work for my daughter either.   She is now on Methotrexate shots once a week....is that an option for you?

I TOTALLY get it about the pred....I hope we never, ever have to take it again

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