Prednisone not helping

Stay on the 40 until symptoms go away then try taper again. How much are you tapering by?

Tapering by 5 a week, was down to 30 went back up to 35mg yesterday and today. He was on 40 for 10 days for same reason already. I will look into Uceris. Thank you! Is 10-12 weeks too long for a 12 year old?

Uceris is an oral steroid just like prednisone. The big difference is uceris has a protective coating that only releases the medication once it reaches the large intestine. The advantage to that is uceris is mostly topical and effects only the large intestine without the medication spreading throughout the entire body, so it should have far less side effects then the dreaded pred. Prednisone is systematic, effecting the entire body (causing side effects in your eyes, bones, effecting blood-pressure, messing with your sleep and so forth). Given, some of uceris does spread through the body, but I heard it was like 6%, which is way better than pred's 100%. Uceris is an 8 week course with no tapering required (unlike pred). Uceris is new, meaning it is a lot more expensive, so I would make sure your insurance covers it 1st (I think it is like $1,200 compared to a few hundred for pred).

What is too much for a 12 year old? Generally, you don't want to be on steroids any longer than is necessary. The thing is right now it sounds like he needs it to heal, so it is a necessary evil with the benefits outweighing the side effects. Long term use (a broad term not well defined) increases the odds of getting osteoporosis, glaucoma, and other nasty things. So I drink lots of extra milk while on this, myself.

Best of luck with your son,

iPoop - the only diet that helped my son, was very low sugar and no wheat, corn, or milk - stopped his bm's for the past 6 months to 1 or 2 x a day. (Until this week of course an then it's been 3 x only in the mornings. I'm sure it has increased to do bleeding.

Post Edited (Dawn89) : 4/4/2013 9:36:46 AM (GMT-6)

He is going 3 or 4 times in the morning, with blood and not well formed. Yes, I am ready to cut out the rice, just so hungry being 12 on Pred.

i had been on prednisone on and off the last year and a half. it worked for two flares but my most recent flare even 60mg did not work. sadly sometimes people develop steroid refractory ulcerative colitis, my understanding is it can be as high as 30 to 40% of people. This isn't to say your son has that since he does show response to it, but it sounds to me like he needs to stay at a higher dosage for longer before starting a very slow taper.

personally for me, long story short, ended up getting a remicade infusion last monday and immediately have seen a remarkable difference and I am now tapering prednisone 10mg per week until i get off of it.

A 12 year old should not be on prednisone that much - even if it was working. Prednisone can interrupt child growth patterns. There have been some here, including me, who got worse on the Renew life 80 billion probiotic. I also didn't have any luck with slippery elm or fish oil. Slippery elm can cause medication absorption problems. Are you sure these and the ohter supplements are working? Everyone is different. Some of these things can make you worse instead of better, including the VSL. VSL helps many of us but some have reported getting worse. I usually add one new thing at a time. If it works I keep it and add more. If it doesn't work, or makes me worse, it gets dumped and I try a new one. If you start too many things all at once it is difficult to know if any are making you better or worse, or having no effect at all. It can sometimes be counterproductive to throw everything at the problem all at once. Also, elminating things that don't really have to be eliminated can throw a monkey wrench into the problem as well. Are you sure there has been improvement since eliminating the things you have eliminated? It is also good to eliminate one by one instead of all at once. This can all be a time consuming process but it is better to go slow than to panic, using everything all at once or eliminating things all at once to the point of not knowing what is working and what isn't.

ya, i agree with gary as far as throwing too many things at the problem at the same time - better off to try one at a time -

try to keep it simple - that's another thing with pred - when it's working, it makes everything else work - or at least appear to -

If pred is not working and you've tried 6mp or imuran and MTX isn't working, you should probably see about trying a biologic. There is also possibly the option of trying antibiotics but i am not sure whether that is common in children. It's great if diet or probiotics help, none of that helped me when I was flaring.

"If pred is not working and you've tried 6mp or imuran and MTX isn't working, you should probably see about trying a biologic"

I concur with the biologic. I think there is much more risk with pred than with bio. Bio is for long term, pred more than six months at one time it's alot.

But nobody will completely agree here. Gary doesn't like biologics, Soystud doesn't like rice lol , so you see you know....and last but not least, I don't like sh***t that don't work. I hate that.

Just curious, how is your 12 year old dealing with all of this. Must be tough on him mentally. Especially at 12 years when his friends go eat McD and have fun. Instead, he has to take predinsone and eat like a hermit.

I feel for him, I share a similar boat.