good prednisone experiences?

Hello,

Well... I just barely posted this in the CD forum, but since I don't know whether I got CD or UC I took the liberty to approach you guys too! For the last year and 3 months I thought that I had Ulcerative Proctitis, but my last colonoscopy just a month ago showed not only 15 cm of the rectum inflamed, but also 4 cm up in the splenic angle. Biopsies didn't provide further light, so the doctor said it could be either UC or CD, and that it didn''t matter because the treatment is pretty much the same for both.

Anyway... After the colonoscopy I haven't been doing very well; my main problem is bleeding; I feel like I bleed a lot, I usually leave the toilet water all red every time I go to the bathroom, I'm also having cramps, tons of gas, and sporadic painful diarrhea. Over the last 2 months I've been eating pretty badly; I've lost 8 kilograms (about 18 pounds I think) in the last 6 weeks, so my doctor suggested that it was time to get on Prednisone.

I was on Pred once, when I was diagnosed last year I was on 20 mg for about 3 weeks; it did nothing so it was bumped up to 40 for a couple of days, then quickly tapered down to 30 mg and then tapering 5 mg every week or every 2 weeks, I don't remember. I was on it for a total of 8-10 weeks. I experienced only minor side effects (night sweating, a little insomnia, some weakness and some minor mood swings), I didn't gain weight or had blood pressure/heart beating issues as I've read others have. Now, however, I've been prescribed to take 40 mg for 1 week and then start tapering down 5 mg each week (down to 35, then 30, then 27.5, then 25, then 22.5... etc every week), so it looks like a more intense period.

I don't remember much about being on Prednisone, so I came back here to check what you guys had to say about it and all I found was horrible, terrifying experiences, so I'm wondering... has anyone had a good experience with Prednisone? (by good I mean not "too bad", I know Pred is an awful drug that has a lot of side effects, but I'm under the impression that pretty much anyone that takes it is supposed to live a miserable life of side effects...). So, please help me with this, I haven't started yet; I was supposed to start tonight but I guess I'll start tomorrow morning, now I'm just too scared!

Thank you all for your examples, encouragement, support, and for just being there as an evidence that I'm not alone in this.

Cheers from South America!

Post Edited By Moderator (notsosicklygirl) : 11/3/2011 11:21:55 AM (GMT-6)

I wouldn't say my experience with Prednisone has been horrifying/terrible, but it has been *uncomfortable*. When I was on a higher dose of prednisone (40mgs), the heart palpitations and dizzy spells were not pleasant, but they subsided as I tapered down (though I still have some palpitations early in the morning even now at 10mgs). The mood swings are also pretty unpleasant, especially when combined with PMS, but I wouldn't say it was horrific.

Thankfully I've never had to be on predisone for terribly long and I think that is where all the horror stories come from. Prednisone has its place and the good thing about it is that it generally works and it does so quickly. I would not be scared to start prednisone. The way I view pred is as a temporary bandaid and when the side effects start happening to just remind yourself of that.

I was on it for two months at one time and it did help my UC, but I could not sleep. I gained about 8 pounds, and lost it after I got off it. I don't like being on it and I will try anything else to avoid it.

If you want to wait until he calls back, that should be fine. I bet he tells you to start anyway. But maybe you can plan a faster taper.

Personally I love pred. My first (and only) time on prednisone for more than a 5-day burst started at 60 mg for 3 weeks and my total time on it including the taper was 3 months. I never had a negative side effect and did enjoy the euphoria and extra energy. That sounds similar to what you experienced. I think you'll do fine on 40, esp. since it's only for a week.

Hey Heptacampeâo!

Did you start the prednisone last night? I can't say I had a good experience with prednisone but it did manage my symptoms very quickly and I felt better. I had a very tough time tapering off without symptoms reappearing. I don't think this is common but I suppose if your UC isn't well controlled with the medication you're using for maintenance, it can happen. I wouldn't expect it to happen, it's probably much more common to take a course and taper off and feel better for quite a while. For me, I took the course, dealt with symptoms from 20mg to 2.5mg, had a major flare up, had to start over & start 6mp. At that point, I was dealing with major pred side effects. It took a long time but I was able to taper off & I've been off it for 4 or 5 months now. I think the best thing to do is to have a plan when you start it. Ask yourself the following question, if you can't taper down without symptoms, what will you do? Would you be willing to consider other medication? I didn't want to and I waited. I should have started 6mp sooner...

Personally, I wouldn't, if you're doing better. However, if you start to get worse again, then I'd start. Buts see what your doc says.