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Ulcerative Colitis
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Posted 4/23/2014 9:29 PM (GMT 0)
Hi,

I was on between 30-60mg of prednisone for a month with a strong reduction in symptoms but no real remission (always urgency/stomach cramps in the morning). As soon as I tried taking 20mg I started bleeding again. Apparently a small minority of people are “steroid non-responders” who cannot achieve remission by taking prednisone. So, my question is when is it time to give up on achieving remission through prednisone and try a different drug? Is it worth trying another month at 60mg of pred/day? Or is it time to try something else to get the pain to go away? I’m willing to try just about anything, at this point. I try to be hopeful, but after a flare of a full ten months now, remission just seems like such a dream.
Posted 4/23/2014 10:53 PM (GMT 0)
If you've been flaring for ten months with no real relief, and can't get below 20mg of pred without issues popping up again, I'd say it's time to start looking into other meds. Does your GI think for some reason things might change? Are you taking anything else besides prednisone?

I never responded to steroids (iV or oral pred, and tried uceris but it just made bleeding and flare worse) and they were the first thing I tried and stopped almost immediately when I first got sick so I'm not as well versed in them. Arent they typically used as an induction medicine anyway? I thought most times people still needed some kind of maintenance therapy after the prednisone helped with the inflammation and initial flaring?
Posted 4/24/2014 1:24 AM (GMT 0)
Don't do pred again. It will destroy your body and you're not getting anywhere near enough benefit from it.
Posted 4/24/2014 1:34 AM (GMT 0)
Ive been on prednisone for 10 months. Every time I get myself off of it another doctor puts me on. But it has never helped my symptoms let alone put me in remission.

Time for new meds!
Remicade has already started working wonders for me.

Screw prednisone.. stay away from it... especially if its not helping!
Posted 4/24/2014 1:38 AM (GMT 0)
I was steroid refractory. I wouldn't respond to it if it was lower than 60mg which just isn't good. So that was the end of prednisone for me. Run far away from that stuff if you can and try another med. It's so damaging to the body.
Posted 4/24/2014 2:53 AM (GMT 0)
My last flare, I was taking 40mg per day. It did nothing for me. Nothing! I weaned off it quickly since it wasn't working and started Simponi. It took me out of my flare within 3 days.
Posted 4/24/2014 3:42 PM (GMT 0)
My doctor told me he’s had a 75% or better success rate with a high dose prednisone + lialda combo, so that’s why he wants me to stay the course with the drug for another month. I’ve been taking probiotics and fish oil too, but he said that they wouldn’t do any good and the only supplement that might is drinking aloe vera. I’m going to see if I can find some, but anything with a possible laxative effect seems worrying.

Other things I have access to try:
-“Vitalzym”, an enzyme supplement. Supposed to help with inflammation and digestion.
-Transdermal cannabinoid patches (legal where I live.) Supposed to reduce inflammation without getting you high.

But insurance won’t cover the alternative meds so I can’t really afford to take them long term. I'd be worth it for sure if they worked though.
Posted 4/24/2014 9:25 PM (GMT 0)
All of my doctors kept trying to make prednisone work.
If it hasnt worked to get you into remission at high doses within a month... I doubt it will.

Don't let this disease ravage your body for another month. If you want to try something different, tell your doctor.

I wish I would have had doctors that listened to me. By the time I was able to be seen by a GI who wanted to work WITH me to fight my UC... I was already so far gone.

If you think prednisone is not working. Then it's not.

I suggest Simponi or Remicade.

If you arent having too bd of symptoms and can wait a couple months for results... you could try 6mp or Imuran. They are generally considered the 3rd line of drugs (1. mesalamine like lialda. 2. prednisone. 3. immunosuppresive. 4. biologics (remicade, etc).)
But they take a little while to start woking.


IMO, it seems like its time to ditch the pred and move up the medication line. If your doctor disagrees.. when its time to ditch the doc too.
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