Long Term

[Empty bucket]

I was wondering what is considered long term use of preds ? If you've been on preds for long term should you taper slower than short term use ?

[elephant]

My thought is if you have been on prednisone for longer than six months you really have to taper very slowly especially with Wegeners. I have been on prednisone on and off my whole life. I was on prednisone about 15 years continuously, then off for 10 years and now I am on again...

[JanW]

The longer you're on the longer you should take to get off, is what I've always heard. Also, while some people may have to remain on steroids their whole life once they are diagnosd with this disease, goal is always to get to the smallest dose possible -- pred does have it's own side effects, many of which don't show up until years later.

[renidrag]

I started at 80mgs a day and six months later was off completely, and still am. Dropped from 80 to 2.5 and done.
It is however not the preferred way from what I read on this forum. I was very nervous doing the taper as directed but I followed Doctors orders. Most users here will drop very very slowly. Some can not get off at all.
Dale

[Sangye]

An endocrinologist told me if you're on at least 20mg for 3 weeks, then your adrenals have shut down and are dependent on the pred. That means you have to taper gradually. All of our docs know that-- it's pretty basic.

What they don't all appreciate is how slowly most people need to go once they get below 15mg. And slower below 10mg. Snail's pace below 5mg. You have to tiptoe out of the room so you don't wake up the Wegs.

[JanW]

The other thing that you need to grasp is that if your body is going to be under any stress -- my surgery last month for instance -- that docs may need to offer additional steroids because your adrenals cannot ramp up to do the job to deal with the stress. I had a steroid shot for 'allergies' in September, and the ENT and rheumy calculated together how much additional steroid I would need post surgery for my body to deal with the stress. And didn't send me home with any additional, because my docs believe that the risk to me is not worth the reward at this time.

[Empty bucket]

Thanks All. My doctor always seemed happier that I was off the preds and wasn't to concered about the ctx. Actually I think the preds worked great for me but he just didn't like for me to take them. I had no side affects from them either.

[JanW]

Preds always make you feel great. It's what they do to the insides that's not a pretty picture. The risks of ctx have been pretty well established. Unless you don't respond to anything else, you shouldn't be on it for a long time.

[Sangye]

I know it does for many people, but pred doesn't make me feel great. It makes me feel weakened and depressed. Even the big hits of pred during the rtx infusions instantly made me feel awful. I've got no love for pred... no love at all.

[renidrag]

I must be very light on my feet
Dale