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To Pred or Not to Pred...

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Ulcerative Colitis
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Posted 6/26/2010 9:47 PM (GMT 0)
I've been on Prednisone for almost 5 months now and I realllllly want off of it!!! I had a really bad flare that started in March... progressed very quickly and hit me like a freight train.  Started with 40mg, then bummped up 80mg dose while in the hospital but I was still not responding. I finally got into remission with a couple of doses of Remicade. Then, on my 4th Remi shot I went in to anaphalytic shock and can no longer use Remi. I just started Imuran as an alternative to maintain remission, but my GI says I have to stay on the Pred until the Imuran kicks in... in about 3-4 months. (Yuck!) Since my disease dose not respond to Pred and never has with any other flares... I'm wondering if I really need to stay on it. I'm already in full remission and it is my understanding that Pred does not do anything to maintain remission anyway. I was at 15mg when Remi failed, and have already dropped to 10mg against my GI's best advise. I'm doing fine, but kinda of afraid to keep going!!! I know some folks flare while tapering off Pred, but I've never had any problem with that. Does anyone else have pred resistance or similar experience???
Posted 6/26/2010 9:56 PM (GMT 0)
If you are not getting worse while tapering, why does your GI want you to stay on it?
My GI always prescribed it as a "try to get you into remission and then taper" drug, but it never worked for me and I would get even worse trying to get off it, which is why I was on it for a year. Not a good idea. I wish I had never tried it at all! I'd say if you can taper with no increase in symptoms, then I'd do that
Posted 6/26/2010 10:02 PM (GMT 0)
My guess (I'm not a doctor) is that he really wants to minimize the risk for the flare to come back until the Imuran has had a chance to work. With Prednisone not working well the only thing left for acute treatment is Humira and surgery.
Posted 6/26/2010 10:18 PM (GMT 0)
I agree with chcl.. makes sense really..
Posted 6/26/2010 10:25 PM (GMT 0)
You are what is referred to as "prednisone dependent". That is you cannot stay in remission without staying on prednisone. The plan your GI has worked out is the typical plan for steroid dependent patients. Keep them on pred until the 3-6 month window for immunos has had a chance to kick-in. Hopefully you will find success with Imuran and will be able to taper off steroids once and for all. Even though you are in remission right now it would not be a good idea to taper completely off until that magic window has passed. If you taper off pred at 6mos with Imuran and you flare then you know for sure that drugs aren't working for you.

Sue
Posted 6/26/2010 10:32 PM (GMT 0)
I don't understand why your doctor would want you to stay on pred. if it doesn't work for you...
Posted 6/26/2010 10:41 PM (GMT 0)
well, that's why I said what I said...because the poster said pred didn't do anything and that she/he is not having an increase in symptoms while tapering
Posted 6/26/2010 10:58 PM (GMT 0)
I don't think I would stop taking pred completely until I had been on the Imuran for a little while. It doesn't necessarily have to be 3 months but I would taper and give myself a few weeks. I know how frustrating it is to stay on when you want off but you don't want to risk another flare. I understand you say prednisone doesn't do anything for you, if you really think that's the case, talk to your doctor and see what s/he thinks. I think the prednisone is usually doing more than we think it is.
Posted 6/26/2010 11:58 PM (GMT 0)
When you are on pred as long as you have been you have to taper very very slowly anyway
Posted 6/27/2010 1:10 AM (GMT 0)

chcl said...
My guess (I'm not a doctor) is that he really wants to minimize the risk for the flare to come back until the Imuran has had a chance to work. With Prednisone not working well the only thing left for acute treatment is Humira and surgery.

This is exactly what my GI told me. Which does make sense... but, since pred did not get me into remission nor does it maintain remission... why would there be any risk of a flare comming off of pred? I guess I am just not seeing the logic in this (or mabey I just don't want to!!!) I don't think I am dependent... I've had no problem tapering now or in the past. It just dose not work for me. I wish I had never tried it again either! The side effects I am having are pretty bad this time... but I would be pretty mad at myself if I did stop and ended up in a flare again. I know it's a gamble... with UC it always is!!!  
Posted 6/27/2010 4:40 AM (GMT 0)
Are you on any rectal meds at all? Maybe a steroid retention enema might help while you're lowering the pred.

q
Posted 6/27/2010 5:12 PM (GMT 0)
If youre on predisone and not having symptoms i would try to taper of it as fast as possible because you will build a resistance the longer you are on it. It works great for me during a flare about 1 or 2 times a year, if i use it more than that then it doesnt work (even at 60 mg a day). After about 2 months of continued use it doesnt do much for me, I have to use it sparingly for it to work when i really need it.
Posted 6/27/2010 7:29 PM (GMT 0)
I have to ask again.....any rectal meds considered, onelove?

q
Posted 6/27/2010 9:17 PM (GMT 0)

ch13 said...
If youre on predisone and not having symptoms i would try to taper of it as fast as possible because you will build a resistance the longer you are on it. It works great for me during a flare about 1 or 2 times a year, if i use it more than that then it doesnt work (even at 60 mg a day). After about 2 months of continued use it doesnt do much for me, I have to use it sparingly for it to work when i really need it.

I'd say he should follow his doctors or get another doctors opinion.
Posted 6/28/2010 4:52 AM (GMT 0)
I am going to get a second opinion!

q- I tried enemas with my last flare, but it didn't seem to work at all and my disease progressed. My GI said that since the inflamation is so high up in my colon they can't get up there anyway.
Posted 6/28/2010 8:21 PM (GMT 0)
Well, you're suposed to use them in conjunction with the Asacol....

It's definitely a decision to use them...wish you'd reconsider.

q
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