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How prednisone doesn't work for everyone?

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Ulcerative Colitis
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Posted 10/12/2012 2:59 PM (GMT -5)
Ya know a year ago I was on pred it did not put me into remission so why did I think taking it now it would help? I need relief before my Imuran kicks in, but it only half helps. I've done doses of 40mg and less and still it doesn't give me remission at all!

I thought this was a shoe in for everyone, everywhere. Too bad.

 

Posted 10/12/2012 3:04 PM (GMT -5)
prednisone made everything worse for me. i do not do well with steroids either. i was on 40 mg, too.
Posted 10/12/2012 3:05 PM (GMT -5)
The more I was on prednisone the less it worked. They call it steroid refractory.
Posted 10/12/2012 3:28 PM (GMT -5)
The first time I was on it was great. The second time not so much.
Posted 10/12/2012 5:46 PM (GMT -5)
Twice in the same year seems to be the ingredient for failure. I think those are the times it failed for me. Not having taken it in 2 years it worked like a miracle 6 weeks ago. 5 mg starting Tuesday.

I tossed out the Yerba Mate and stopped the sugary keefir and pretty much any other sugars and now I am feeling ready to taper down to 0. Taking 10mg per day in 2.5 mg doses every 6 hours, when I forgot to take it for nearly 12 hours I felt some withdrawal pain but I think it woke up the adrenals.
Posted 10/12/2012 9:55 PM (GMT -5)
The human immune system is amazing,when you block some parts, it finds a work around and starts the attack
all over again,it is desperately trying to kill something. But never fear the research doc's are working on a drug to inhibit,
the pathway that inhibits pred.
More meds,yea.
Old Mike
Posted 10/12/2012 10:03 PM (GMT -5)
Pred works like magic for me, but The lowest I seem to be able to get without suffering recurrent flares is about 5 mg. i mean, at 5, which I cant feel or see (i lose pred face below 10 mg) any effects- but I know even 5 isnt acceptable forever and ever- hence I will prob have to do surgery. But i dont find it less and less effective with use- works very reliably for me and, other than pred face and insomnia, I dont find taking it very problematic at all. But that and its long term toxicity makes me hate it in other respects.
Posted 10/12/2012 10:07 PM (GMT -5)
@Probiotic - wow...that's interesting. I thought the human body was "supposed" to make the equivalent of 5mg (I've also heard 8). Has your doc every explained it? Are you pred dependent? I'm just honestly curious.

I'm sorry you can't taper off.
Posted 10/13/2012 8:57 AM (GMT -5)
ActiveUCer- yeah I reckon, based on the body's own production of about 5 mg pred equivalent cortisol, that one could probably be on 5 mg pred forever without toxicity. Indeed, those who have had their adrenals surgically removed for reasons such as cancer, are documented to suffer no toxicity from that level of pred whatsoever even when theybtake that level for the rest of their lives... So it is logical that if ones adrenals temporarily go to sleep (or are under producing for whetever reason) and oneis mrely topping up cortisol, that low doses for years and years would be perfectly safe. That said, I try and avoid pred. I am almost off pred right now and if I do have to keep using even 5 mg to avoid flares I will probably opt for surgery though.
Posted 10/13/2012 12:10 PM (GMT -5)
Probiotic, I know several adults with CD who have maintained of 5mg/day of pred for years. They don't live in the US though and I think that may make a difference in terms of which drugs are considered acceptable. One of them was a woman who almost died of CD and she's been on 5mg of pred for 20 years or so. She's now in her 70s and doing fine. No osteoperosis etc.
My daughter's GI feels a low dose of pred is preferable even in children than the immunomods/anti tnfs. This is very unorthodox and worrying but at the same time she's a top international specialist and a paid consultant for centaucor etc. She says for adults low dose pred is very acceptable. But many would disagree. At what point is it better to lose an organ? It depends on the results of surgery I suppose. I suppose if your colon looks bad on scoping surgery will be in your future anyway so best get off it, if it looks good, it might be worth speaking to a few GIs about low dose pred?
TAM - We were told by my daughter's GI that imuran is not proven to induce remission but to maintain it. I have heard it inducing remission in some people but there's no research supporting it. I guess most people who need it are not in a position to wait 3-6 months for it to kick in anyway so that's one reason why there isn't this research. Some docs will use tacrolimous if pred is not working as a bridge with imuran until it kicks in. That's another option for you if you don't want to go to remicade and the pred does not work.
Posted 10/18/2012 9:15 AM (GMT -5)
I think maybe I will try just 5mg and my rectal meds for a while and see how I do. Then really eat a bunch of spinach and sunflower seed butter. I've got to try something!
Posted 10/18/2012 12:48 PM (GMT -5)
Pred worked amazing first time for me at a 40 MG taper then second time I was held at 40 MG for 4 weeks and did nothing! Enemas saved me.
Posted 10/18/2012 8:17 PM (GMT -5)
I was on 40mg for 6 MONTHS!! Didn't do anything for me. :(
Posted 10/19/2012 5:03 AM (GMT -5)
Prednisone worked for my flare ups instantly for about 6 years (30mg - 40mg) with taper to 0 in about 2 months. Fortunately it has lost its effect right now and I am in the middle of a major flare up (ive got a topic going sonewhere). A small guess was I maintained no anti-inf diet during the years which really should be done even uf you dont feel it changes anything.
Posted 10/19/2012 6:40 AM (GMT -5)
I agree with what probiotic said.

Some people have adrenals that don't work or are surgically de-activated.
They seem to thrive for many years on 5mg prednisolone with minimal side-effects.

I believe that I have adrenal insufficiency. Hence a 5mg dose of prednisolone works wonders as it compensates for the inadequacies of the adrenals.

Doc put me 40mg prednisolone tapering down by 5mg every week.

Dropped by 5mg every 3 days instead.
Figured out that just 5mg keeps me in remission.

Also, the body isn't getting quite a hammering from higher dose of prednisolone.
And there is plently of prednisolone left in case of emergencies.
Posted 10/19/2012 6:48 AM (GMT -5)
Prednisone never worked for me.
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