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Is it odd that I'm only on Prednisone?

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Posted 4/6/2008 7:00 PM (GMT 0)
I've been reading, reading, reading, and I've noticed that most the time prednisone is used in conjuction with other meds. however, my GI pulled me off asacol and rowasa to have me strictly on prednisone. And i've been on the pred 40 mg for 20 days, then 60 mg for the last 3 days and now back down to 40 mg (all this at the doc's orders) and i'm still not "better". I'm still going 9-12 times a day, am up at night with cramps and pain, and am still pretty much miserable.

She mentioned if the oral pred didn't work, she wanted me on IV pred, will that really make the difference? I'm so confused....
Posted 4/6/2008 7:06 PM (GMT 0)
I'd suggest you sit down with her and discuss her treatment plan. In my case I was off Asacol and Rowasa and on Pred only for a couple of weeks because we determined mesalamine was making my symptoms worse instead of better. After a couple of weeks, I started back on Rowasa. So short-term use of pred to get a flare under control in this situation may be appropriate. But there should be a plan for beyond the Pred, because it isn't appropriate for long-term treatment. Also, as you're finding, eventually you become resistant to the Pred and it doesn't help.

If she has no plan beyond Pred, I'd seek a second opinion or even a new GI to take over my care.
Posted 4/6/2008 9:56 PM (GMT 0)
When I had my allergic reaction to colazal, I was solely on pred for a few weeks. Then I started Sulfasalazine. So it may very well be that your doc wants to get it under control. Sounds like it's time to talk to your doc to figure out your future treatment plan.
Posted 4/7/2008 3:28 PM (GMT 0)
Try not to get discouraged; it can be very hard to subdue a flare initially after diagnosis. It's not unusual to take only Pred; I did that to fight a severe left-sided flare that nearly blocked my colon entirely. For me, the 40 mg daily started working right away. The problem is that your inflammation has not responded to a conservative dose of Pred so your doctor upped it to the maximum permissible oral daily dosage, 60 mg. It could be that you do need IV medication if this higher dose of Pred still does not relieve your symptoms. There are many members here who have experience with IV meds-- hopefully they'll give you helpful feedback soon. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remission)

Posted 4/7/2008 3:49 PM (GMT 0)
you need to find out why your doc does not want you on any other meds. You should be on a maintenance med when transitioning out of pred.
Posted 4/8/2008 12:52 AM (GMT 0)
After flaring for two years, IV steroids had me back down to one solid stool within three days. Then I did 60mg pred for a week... 40 for two weeks... 30... 20 etc.

I was able to achieve full, med-free remission within six months without a maintenance drug... though I stopped taking it against my doctor's orders (I don't recommend that)

The SCD was also a big part of that for me.
Posted 4/8/2008 4:46 AM (GMT 0)
When I tapper off a high dose of Pred then Doc will start me back on other drugs.
Posted 4/8/2008 9:30 AM (GMT 0)
hai, actually i am new here. I on prednisone because of the minimal change disease thats relapse after about 2 years stop taking the medicine. Actually i am facing the swelling problem at my feet, i already control my water intake, and take low sodium diet, but still swell after a whole day work, probably standing and sitting only. Last week i get a week leave the condition turn better, but once i start working again, it seem like swell back. So actually, do you all have this kind of problem? I am quite confuse now with my conditon. and i am not only on prednisone, i also on a cyclosporine 100mg. So anyone that can lend me a hand in this? Thanks.
Posted 4/8/2008 12:08 PM (GMT 0)
Hi Kym, you should post your own thread so that people can respond directly to you. I'm sure that people will have all kinds of helpful comments.

MathGeek, when you speak with your doctor, I suggest asking about rectal meds. Depending on where you disease is, these can be really helpful. While you eventually taper off the oral steroids, using a rectal steroid med could ease the transition.
Hang in. It sounds like you're in the midst of a bad flare and it can be so discouraging. Fortunately, there are people here (me included!) who can attest to the fact that the flares end and you can eventually find a combo of meds that will help you keep in remission.

If I were you and meeting with my doctor, here's what would be my list of talking points:
1) why just pred?
2) why did you stop the Asacol and Rowasa? Did she think you were allergic?
3) why not try another 5ASA drug (similar to Asacol but different formulation)?
4) what's the long term plan? Usually doctors want another drug to take the place of the pred when you get the UC under control.
5) What can you do in the short term to stop running to the bathroom? What about Levsin or Lomotil or other anti-spasmodic drug that will slow down your intestines? Would a small dose of valium help? Anything to calm down your body so you can sleep through the night, would be great.

If you don't get answers that you can understand, then I would see another doctor for a consultation. You don't have to switch doctors to get another opinion and sometimes that second opinion will help you understand the treatment you are receiving.

Keep us posted. :)
Posted 4/9/2008 12:40 AM (GMT 0)
Last post for you was filled with good questions for your Doc. Get to the best guy/gal around., and keep reading!
If you are weened from the pred, and they want you on a drug like the 6mp, it takes a long time to work
(2 months ish), so a real plan is needed. You'll need enzyme tests at take a week before they even give it, and then the time to build that drug up, whiel you are weening the pred.
Hang in there, and don't stay on the pred any longer than you have to.
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