Prednisone for ever and evermore?

[Kimbangu]

Hi, I was diagnosed Nov2009. Mr. Wegener has so far confined his attentions to my right hand, hearing loss and kidney problems.

I have been on regular cyclophosphamide infusions since then. Started off at 60 mg prednisone and presently at 15 mg/day.

On my last visit to hospital there was some discussion about the tapering of prednisolone. They're just following a protocol ( reduce by 2.5 mg every 2 weeks) and I was interested to know what happens when we get to 5 mg/day. I know from reading this forum that this is when the fun starts.

I was a little surprised therefore to learn that when they get me to 5, the idea is to leave me at 5 mg/day for a year. Assuming I am in remission they will keep me at 5 mg for a year. The thinking seems to be that if I am stable and in remission at 5, is it worth ever trying to cut it out completely? When I asked about the long term, I was told that many WG people never manage to get off Pred completely.

Well, I thought the idea WAS to get off prednisone completely. I know that this particular medication has undoubtedly saved my life but I hate the side effects.

Any thoughts on this? - should I count my blessings and accept I'll be on Pred for ever? ( I'm only 56) .... or when the time comes, should I be more insistent that I want off steroids completely? - Because I am already getting the feeling they won't push this decision, and they seem to be quite happy to leave it up to the individual(?)

[Jack]

The regime they are suggesting sound to be about right although everyone is different. I myself can't get below 10 mg without intolerable problems, but others manage to get off it completely. Unfortunately you are right about the side effects, I've had most of them and they are a real problem, but the alternative is even worse. Welcome to the world of Wegener's!

Sticking at 5mg for a year and then perhaps trying to ease it down even further sounds like a reasonable plan to me. You are still at a fairly early stage in treatment and for now I would be far more concerned about getting off the cyclophosphamide and onto something less toxic if your symptoms seem to be under control.

[Kimbangu]

Thanks Jack, much appreciated. You are my guru in these matters!

[elephant]

I agree with Jack, I can't get down below 10mg of prednisone either. I got down to 5 mg three months ago and had to increase it to 10mg. My ears and sinuses got worse. They seem better since I increased it to 10 mg.
Being on 5 mg of prednisone for a year is not bad. After my Kidney tranplant in 1989, I was tapered down to 5 mg of prednisone and stayed on that for 10 years. Then I talked to the Transplant team about me getting off. But that all changed in July 2008 ....prednisone, prednisone.....I will be on it for life.

[Jack]

That's interesting. I used to be able to manage on 5mg after transplant, but can't get away with it anymore.

[Sangye]

(I love your new avatar Timbo!)

A lot of Weggies can get off pred. I was off it for 2.5 yrs (after starting with 1,000mg IV pred and tapering from there). Our docs are very anxious for us to get to 5mg for sure but really want us off pred altogether if possible. Even at 5mg there are many consequences--short-term and long-term. As long as you don't have a major flare and/or do damage, any time off pred is a good thing. It lets the body repair a bit.

I think the plan to keep you at 5mg for 1 year is looking too far down the road. A Weggie year--especially for newly diagnosed-- is a very long time. Maybe just take it 3 or 4 months at a time and see where you are.

[JanW]

I agree with Jack and from what I have read, reducing the most toxic immunosuppressant, in your case ctx, is the first concern (many in US are going with a 3 to 6 month timeframe on it if they can get away with it). Listen to what Sangye is saying -- even at 5 mg there are long and short term consequences -- I was never on much more than that with asthma (and not consistently at that) and my bones are shot. I was shocked that even though I last got a one-dose steroid shot in September they gave me extra steroids during my surgery -- surgeon and doc agreeded that my adrenals would be no where near normal. And that was one shot at the allergist for allergic nasal inflammation (sorry, doc, that turned out to be Wegs).

[Sangye]

I can't even tolerate 5mg pred. I can barely tolerate 4mg. Your bone loss is exactly what I mean, Jan-- pred at any dose is still causing harm. The docs say 5mg is close to what the body makes so it won't cause bone loss, etc... BALONEY. It's a synthetic steroid and the body knows it.

"It's not nice to fool Mother Nature."

[JanW]

Seriously. I probably took pred less than a dozen times, over five years, at doses no more than 5 mgs a day (several medrol step-down packs in there), and I am an African-American, so starting out with more bone density -- yet my DEXA shows significant pre-menopausal bone loss. My doc's big thing is that doctors prescribe steroids because they are so much more comfortable with them than they are chemo drugs and yet they don't look at the devastating side effects down the road. As little as possible (or none) for as short a period as possible is his motto. My pulmo wrote the script for them all the time, and my allergist loved giving a shot of it every once and a while if you complained of allergies.

[DEE]

im still on rollercoaster of preds nearly got down to 20 mg !!!!!!!! now on 55mg again coming down 5mg every two weeks untili get to 30mg but glad to say it helped with ear infection DEE X