how long is too long on pred?

Hi there,

So, long story short, been on pred since February 2012 and been trying to taper since. Started at 40mg and now down to 15mg. Had gotten down to 10 about 2 mo ago, but had to amp pred back up to 20mg/day when symptoms came roaring back.

So, basically been on pred 4 months now. I feel like I have a lot of side effects and signs of steroid dependence/withdrawal...fatigue, hair loss, moon face, weight gain (esp. around abdomen), joint pain...I am sooooo looking forward to being off pred, but even at 15mg/day things are *shaky*, if you know what I mean...definitely NOT in remission.

How long have you guys been on pred with a successful taper to zero and with stable symptoms? Have I already been on *too* long? Should I try to taper more quickly despite return of symptoms? Or should I maintain a slow, steady drop, assuming that all will be OK in the end and I will *eventually* be off pred?

Ta and thanks for any advice,
Lisa

CoLah,

I started at 40mg in Jan 2012 and have been trying to taper ever since. I had to stay at 40mg for 8 weeks before I got my symptoms under control and that should have been my first sign that the pred was not working for me. I persevered and was able to taper to 10mg. I tapered by 5mg every 7-10 days depending on how I was feeling. The number of BMs increased and the bleeding increased each time I tapered but after a week they would disappear. I continued to taper by 1mg but found I could only taper every 2 weeks. This was when I decided that I had had enough and I started Remicade.

The pred has taken a huge toll on me. I have gained 20+ pounds, moonface, fatty deposits under my chin and between my shoulder blades, hair loss, etc. Now I also have increased anxiety and trouble concentrating. If I don't take a sleeping pill at night I am waking up with nightmares every 2 hours. I just want to jump out of my skin. I have uncontrollable bursts of anger and I am easily frustrated. For me, it just made sense to get off the pred as fast as possible.

I had my second Remicade infusion this morning and I will continue to taper from the pred later this week. The doc said I may be able to taper by 2mg each week if the effects of the Remicade hold.

Hope you are doing better on pred than I did. Good luck to you!

I took 60 mg a day for nearly 7 months. It helped me a lot, the only side effects I had were a fat face and green stool. Then my current "specialist" told me Prednisone was bad and Remicade was safer. I tapered off of it zero Pred in about a month.

It's hard to say what's too long. I think it depends on the dose, if you're tapering and you're on a good path to remission and you've been on it for a few months, I don't think it's too concerning. What was a concern for me was that I was on it for about 2 months, tapered way down to 2.5mg and flared up. I had to go back up to 40mg to get it under control. I tried to taper down again and things were rocky most of the way. What looked like it would be a 2-3 month taper turned into 6 months, then 9 months! I had tons of side effects and I felt terrible about myself. A short course can nip a flare up but a short course can easily turn into a long course.

How long have you been on remicade and Imuran? I'd like to say, YES, taper and stay consistent but I know sometimes it's not possible. I had to listen to my body the whole way from 15mg to 0mg. I didn't taper weekly, I tapered when I felt stable. I tapered at 1mg a week from 10mg to 0. Luckily I've been off for quite a while now. I am not sure if I would take it again if I flared but it's easy to say that when you're feeling decent.

Four months of daily pred use is considered long term. The side effects you are mentioning are not indicators that you are pred dependent, but if you have problems maintaining remission while either tapering off, or getting off, you might be pred dependent.

Sue