Any Advice Welcomed! Just Diagnosed!

[Sangye]

No one can say whether or not you can get off pred completely. You can only find out by trying.

There are 3 ways to taper pred:
1) Same dose each day and taper it. (eg 5mg every day, then taper it to 4mg a day every day....)
2) Alternating zero pred days (eg Monday 5mg, Tuesday 0mg, Wed 5 mg....)
3) Alternating dosage days (eg Monday 5mg, Tues 4mg, Wed 5mg.....)

I don't think your current taper is the slowest way at all. You could try alternating 5mg/4mg if 5/3/5 is giving you trouble. If you've been on pred for longer than the initial 3-6 months, you might have to drop 1mg a month to get below 5mg. To get from 5mg to 2.5mg I had to taper by 1/4 mg every week or so. Sometimes I had to hang out at a new dose for a couple weeks. So I was generally tapering by 1mg a month but I couldn't tolerate dropping it the entire 1mg at a time.

[Rose Cozzette]

No one can say whether or not you can get off pred completely. You can only find out by trying.

There are 3 ways to taper pred:
1) Same dose each day and taper it. (eg 5mg every day, then taper it to 4mg a day every day....)
2) Alternating zero pred days (eg Monday 5mg, Tuesday 0mg, Wed 5 mg....)
3) Alternating dosage days (eg Monday 5mg, Tues 4mg, Wed 5mg.....)

I don't think your current taper is the slowest way at all. You could try alternating 5mg/4mg if 5/3/5 is giving you trouble. If you've been on pred for longer than the initial 3-6 months, you might have to drop 1mg a month to get below 5mg. To get from 5mg to 2.5mg I had to taper by 1/4 mg every week or so. Sometimes I had to hang out at a new dose for a couple weeks. So I was generally tapering by 1mg a month but I couldn't tolerate dropping it the entire 1mg at a time.

you may be right. I have been on preds for 2 yrs, thats when I got so sick and was dxed. what a trial and error business this is!

[Sangye]

Oh yeah, 2 years is a long time and you'll have to be very patient tapering. Dr Seo has really gotten that into my head.

[Rose Cozzette]

Oh yeah, 2 years is a long time and you'll have to be very patient tapering. Dr Seo has really gotten that into my head.

well shoot, patience is not my strongest point. plus I am concerned abt the long term damage preds can do.

[Sangye]

You'll do far more damage to yourself if you hurry a taper. In fact, if you mess it up like I did last year you'll have go back up to the dose where you began, sit there for 6 months and then start all over.

And if you taper off pred before your adrenals turn back on, you'll be in very bad shape. Trust me on that one.

[Rose Cozzette]

You'll do far more damage to yourself if you hurry a taper. In fact, if you mess it up like I did last year you'll have go back up to the dose where you began, sit there for 6 months and then start all over.

And if you taper off pred before your adrenals turn back on, you'll be in very bad shape. Trust me on that one.

how do we know when the adrenals turn back on?

[Sangye]

Mostly you'll know when they don't. Afternoon sleepiness, tearfulness, feeling like you don't have enough steam, etc... are signs that you've tapered too fast and your adrenals aren't kicking in. If you have these symptoms after you drop the dosage, don't let it continue more than 2-3 days or you'll get into trouble and have to increase the dosage a lot to fix it.

If you taper the dose and you feel fine your adrenals are probably kicking in.

[Rose Cozzette]

Mostly you'll know when they don't. Afternoon sleepiness, tearfulness, feeling like you don't have enough steam, etc... are signs that you've tapered too fast and your adrenals aren't kicking in. If you have these symptoms after you drop the dosage, don't let it continue more than 2-3 days or you'll get into trouble and have to increase the dosage a lot to fix it.

If you taper the dose and you feel fine your adrenals are probably kicking in.

well I had a crying spell yesterday and never have good energy so that one is not new. I pretty much take a nap every day for 30 min. so doesnt dound like my adrenals have kicked in.

[Sangye]

Maybe, maybe not. If the crying spells, low energy and afternoon sleepiness are more than usual then it's likely the pred is too low. I find it very useful to keep a daily log of pred dosage and symptoms. When I look back over days and weeks of log entries I can see trends that I'd miss otherwise.

[Rose Cozzette]

Maybe, maybe not. If the crying spells, low energy and afternoon sleepiness are more than usual then it's likely the pred is too low. I find it very useful to keep a daily log of pred dosage and symptoms. When I look back over days and weeks of log entries I can see trends that I'd miss otherwise.

the only new thing was the crying but better today. I used to cry more on higher doses.