Steriod Advice

Two months ago I started a severe flare (pancolitis) so my GI raised my Imuran from 50 mg to 100 mg and started prednisone to keep me stable until the Imuran kicks in. Over the last two weeks my symptoms have gotten worse. I’ve added a fever and dehydration even with drinking fluids all day and night.

 

My GI said stay on the prednisone and taper when symptoms improve. I asked him if I could increase the prednisone if I got worse and he said yes.

 

Today I decided to go up 20 mg to 80 mg. Years back I've been as high as 70 mg prednisone plus 60 mg solumedrol, so I feel I can tolerate the dosage. My question is how high should I feel comfortable going if I feel no obvious side effects? The side effects I don’t see are my concern. I need to work Monday I’m considering going to 100 mg prednisone on Sunday if I don’t improve with this added amount.

 

I’m waiting on the prescription for a steroid enema as well. VSL#3 DS is on order.

That does seem a lot. It might depend on your body weight and fat ratio, or at least it used to. I'm pretty small, about 120 lbs and 5'4" and I was as high as 60 mg in September. I felt like crap both from the UC and most especially from the roids. It also didn't do much for my flare as I bled like crazy and I got super dependent on it because I was on a trip visiting friends and I did not want the UC to get in the way of fun. I watched what I ate and didn't drink alcohol but I still just felt awful. I would most definitely talk to your GI about changing the dosage. I changed mine without consultation and I paid for it via longer tapering and of course longer exposure to the harmful effects of that bittersweet drug and it didn't even touch the flare aside from short term relief. It wasn't until I talked to my GI who also put me on another drug therapy program that things started to calm down and he immediately wanted me to get off of 60 mg and back down to 40 mg. that's my story...

Since you were already on Imuran but at a lower dose, I believe that the increase should take lesser of a time to activate. When I was only on 50mgs and then my doc increased me to 100mgs (for two days only a week) it took approximately a month or so to activate at the higher level.

I would hope that the steroid enema would really turn things around for you! I hope you can start them soon!
I had a wonderful relationship with my old GI, and he trusted me on almost everything about this condition, BUT he would get upset if I started or upped steroids without his consult. Do be careful, they are potent in so many ways.

I asked the nurse for a steriod enema prescription Tuesday but that's not come yet. I'm sure he will write me one and I'll call today again.
I got the okay to raise the prednisone during my last office visit last Friday. I asked, specifically, "If I get worse should I feel free to raise the prednisone?" He said "Sure, that's reasonable." I just didn't think it would really happen so I didn't ask how high should I go. Now that I'm having to do it I'm nervous about what it will do to my other organs.
You all are very helpful and caring, thanks.

I didn't know doctors started out at low doses of Imuran, mine just started me on 125mg and I've been on that ever since. They want me to decrease when I'm 100% in remission again, but I just don't feel comfortable doing it. If it ain't broken don't fix it... I just feel like that'd be asking for trouble.

Anyways, yeah, really pester them about that enema. I wouldn't go over 80mg of pred even if I was 6'3". I might start adding in supplements and stuff though.

Sorry...I just saw that you have pancolitis. Still the enema might help since that lower portion seems to be the hardest to heal.

Oh, in that case I'm not lowering mine. I might be okay but I don't feel like risking it. I hope things start improving for you.

I hear what you're saying Old Hat; I read another post where you stated that. I actually tried to taper after reading that just to see if removing the steriod would eventually get things healing again. With approval from the GI I lowered prednisone from 60 mg to 50 mg even though I was still bleeding with diarrhea and I got much worse. After a few days of getting worse I went back up. I'm kind of stuck here waiting for the Imuran to start working. I understand the risks of steriods but they are holding me stable for now.I get yearly physicals and everything else with my body, heart, sugar, liver, kidney's... is in excellent shape I'm told.

If I didn't have steriods I would not have a colon. So what does that book suggest because I've tried everything else everyone speaks of in here at one time or another and when I have this severe of inflammation, steriods and liquid diet are the only things that get me out of the hospital.

Let me say again I did ask the GI about raising the steriod if I felt worse and he agreed. I just didn't discuss specifics. I will call the office to tell them of my fever. I didn't not have one at the time of the office visit.

I'm not ready to call it quits just yet. Thanks for all the help. I come across rude and stubborn, steriods don't help that, eveyone has been very kind and helpful. thanks

It seems you are in quite the stubborn flare. If this pred and upped Imuran dosing doesn't help you, what do you think you are going to do? Have you looked into Remicade and/or the surgery yet?

Yes this is a very hard decision that only you and your doctors can make. I want you to know that we went through the same agony and my son had his colon removed Sept 2nd....it is not the end of the world. For him the absolute opposite. He has more energy now than he can remember and in every way is HEALTHY....all this in 90 days! Before surgery he was as sick or sicker than you, for two long years. You should be spending some time talking to a really good colorectal surgeon just to know your options and to get real answers to the multitude of questions that you must have. At least that way, if at some point you need to have surgery it is not a rushed decision. Just so you know we look at this as a COMPLETE VICTORY over that $&%^* colon and not a defeat. It actually brings a smile to my face to think of it laying in the garbage, dying a slow death! I know that is a little over the top but this thing was trying to kill my kid.

In my view, the only thing that was as much of a threat to my son, as that colon, was prednisone.

I understand what you're saying, but I've decided that if my flares get to the point where they're really hard to get into remission, and I don't stay in remission for long stretches, then I'm having surgery. Yeah, there's always the chance that you'll finally get into a good remission, but I don't want to miss out on life when flaring badly. If I were you, I'd be asking about getting back on Remicade or about Humira. You've been in this flare for a long time, and even if you're dealing with it ok, remember the damage that's being done to your colon in the meantime!

Hi Burli. My son tried Remicade and it seemed to be helping but after a few months he made antibodies against it. We were given the option of Humera but my son had had enough and was getting sicker and sicker and made up his mind that enough was enough. We, as a family, decided against imuran. Our GI really does not like it (just a little too heavy hitting) and we were not willing to wait the extra months on high pred to see if it would work.

I wish you all the best.