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Ulcerative Colitis
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Posted 1/28/2009 7:07 PM (GMT 0)
5asa and cortifoam works about 50/50 with me... No more blood but very long lasting spasms can occur two times per week following a bm, weight loss with inability to gain, bouts of massive stool, sore rectum and tailbone etc etc. You can reference my signature for what else I'm trying.

So what should I try via meds next...go straight to remmie or humria, try 6mp first and why?
Seeing new GI tomorrow and I'd appreciate any insight or feedback before I go.
Getting close to the end of my rope...

Thanks
Posted 1/28/2009 11:43 PM (GMT 0)
I just wanted to say Good Luck with the new GI. I haven't used those treatments, so no help here.
Are you against trying prednisone? You know he or she will suggest it...

Have you ever tried cutting out all those supplements to see what happens? Perhaps one of them is causing you more harm than good.
Posted 1/29/2009 12:26 AM (GMT 0)
I went Remicade first because the 6mp takes a while to kick in and I needed a miracle ASAP!  Then I went on azathioprine.  Now I am about to wean off the remicade (after almost 4 years) and stick with just the azathioprine.  Your other choice it to do a quick round of pred to get you over the hump & start 6mp at the same time so you feel better quicker and give the 6mp time to do its thing.
Posted 1/29/2009 1:54 AM (GMT 0)

My thoughts are with Peety - maybe too many supplements - you never know.  Be sure to tell new doctor everything you are taking and doing so he/she can help you properly.

ElaineNY

Posted 1/29/2009 4:13 AM (GMT 0)

Peety said...
I just wanted to say Good Luck with the new GI. I haven't used those treatments, so no help here.
Are you against trying prednisone? You know he or she will suggest it...

Have you ever tried cutting out all those supplements to see what happens? Perhaps one of them is causing you more harm than good.

Thanks for the good wishes. I refused pred and my current GI agreed with me
Posted 1/29/2009 4:18 AM (GMT 0)
Thanks all... I'll report the new docs thoughts tommorow night. I'm so scared about crohns...we almost have mo right to complain compared to those poor folks
Posted 1/29/2009 1:25 PM (GMT 0)
     My GI doctor hates putting me on prednisone too but it is the ONLY drug which helps me achieve remission.  He tried starting me at 30 mgm with a 10 mgm per week taper last year but that just didn't cut it.  Not until he started me back on 40 mgm for a week with a 10 mgm per week taper did it work.  Prednisone, 6MP, Colazal, Cort enemas, Canasa and probiotics.....worked all together and brought me to remission FINALLY after seven months of suffering and a ten day hospitalization.
Posted 1/29/2009 2:41 PM (GMT 0)
Wow, you guys and gals with your 10 mg pred tapers per week amaze me.  I am lucky of I can manage 5 mg every two weeks at the high doses and 2.5 mg a month at the lower ones.  But I guess that is the definition of pred dependence which is why I am now on Remi (had to beg for it though) and getting close to surgery.  Still, I think most doctors are out of their minds on the rates they want patients to lower their pred- all it does is make them reflare immediately and end up right back on  a high dose, so slow tapering is the lesser of evils in my view (unless one has a magic bullet).

Posted 1/29/2009 4:10 PM (GMT 0)
How are the side effects on pred you guys?
Posted 1/29/2009 5:57 PM (GMT 0)
side effects can be bad... but one of them is weight gain. I lost weight on it at first... 41 pounds to be exact. but now i have gained 15 of that back and since I like the weight I'm at now, I'm fighting to stay here. Moon face is bad. Insomnia, but that has went away also now that I am tapering to a lower dose. Grumpy, moody.... that has also lessenes on the lower dose ( least girl friend hasn't complained lately ) Lack of sex drive ( on higher dose )( back to normal on lower dose )
Gi started me at 40mg.... Now am finally down to 17.5 mg and am to go to 15 mg in about 5 more days.
Up sides of pred?... they are few but there are a couple. Lots of energy. No more joint pain. Oh and the fact that it helped get me out of a flare.
Posted 1/29/2009 6:01 PM (GMT 0)
Thanks. Wel at least you're feeling better. I do not want to try pred and my GI doc said she doesn't blame me one bit. I'm seeing a new GI today and see what the next step is.
Posted 1/29/2009 6:05 PM (GMT 0)
I've had GIs that thought pred was a terrible drug to be avoided at all costs. I've had GIs that thought immunosuppresant drugs should be avoided. In my experience, a short course of pred, starting at a moderate dose and tapering fairly quickly can give great results without the side effects.

bbc, what antifungals are you taking? Sometimes these can upset the gut enough to mimick a flare.
Posted 1/30/2009 1:45 AM (GMT 0)
Why can't they make a drug that does the same thing as Pred (usually put people in to remission) without the horrible side affects???

Has anyone ever thought, it's usually the good things that are bad for you!!!

Posted 1/30/2009 2:28 AM (GMT 0)
So well said, Shadam, so well said. Pred is soooooo soooo cheap, too- if only they could make it benign long term. Whenever I visit San Diego, I always hop across the border to Tijuana to stock up on pred. Much as I hate taking it, it is a wonder drug for its sheer anti-UC power and can be a true flare stopper/reverser. Anyhow, it is not only very cheap, but in Mexico it is OTC... so I always load up so that I have it on hand. The only chance I will ever up it hugh again, though is to not be in agony while I await surgery, as I am pred'ed out so to speak.
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