prednisone weaning - Lynne

[Guest guest]

Thanks, Lynne.

I read all the stuff posted last night. What a font of

information she is!!!

I noticed that the site I think you are talking about suggested

going down 1/2 mg every 7-10 days. I'm supposed to be going down 1

mg monthly. So if I tried the 1/2 mg step after the first 2 weeks, I

could see if it really helped.

Thanks,

> >>

> >> ,

> >> I just came off of predisone after nine years. It is hard

> > getting off the

> >> drug. I did it by dropping the dosage a 1/2 mg, a month. I did

> > it very

> >> slowly and it took a long time. Sometimes I would have to go

back

> > up for a

> >> few days. Yes, my pain is worse now but for me, I think I am

> > better off. I

> >> am off of it but there are times when I over do or a flare and I

> > have to

> >> take it, to get out of the flare. I just took my time and went

> > very slowly.

> >> Lynn (MeMom)

> >> [ ] Re: haven't been around much lately

> >

> >> >

> >> >

> >> >> Boy, it sounds like exactly what has been happening to me! I

> > was so

> >> >> thrilled when the Embrel seemed to be really helping, but as

> > soon as

> >> >> we started weaning the prednisone again, I started having

more

> >> >> trouble. I went from 15mg, to 12.5 for a month which was not

> > TOO

> >> >> bad, to now I've been on 10 for 3 weeks and am absolutely

> > miserable

> >> >> still.

> >> >>

> >> >> The current plan is that after I've been on 10 for a full

> > month, I'm

> >> >> supposed to start decreasing by just 1mg per month from then

on.

> >> >> But if I never get on an even keel at 1mg, I'm afraid of

what a

> >> >> further reduction will bring.

> >> >>

> >> >> I REALLY want to get off the prednisone. I haven't been on

it

> > as

> >> >> long as you have, but I've been on it since January, and have

> > gained

> >> >> 25 pounds since then. I haven't had any other serious

problems

> > from

> >> >> it yet, but I don't want to get them either!

> >> >>

> >> >> OTOH, my quality of life right now is pretty miserable, and

at

> > this

> >> >> rate of reduction, it's going to take me 10 more months to be

> > off

> >> >> the stuff. I'm not serious, and I know you can't do this,

but

> >> >> sometimes I wish it were safe to just stop " cold turkey " and

> > get it

> >> >> over with, even if it meant I was going to feel REALLY

terrible

> > for

> >> >> a couple of weeks!

> >> >>

> >> >> Then I was talking to my new " case manager " nurse who is

> > assigned by

> >> >> my health care plan, and she told me that some people have to

> > take

> >> >> prednisone indefinitely to control their RA, even with other

> > drugs.

> >> >> I'd heard of that, but the people I'd heard of doing that

were

> >> >> taking really small doses, like 2-5mg daily, not 15 (which is

> > where

> >> >> I've been comfortable) She said that there are people who

end up

> >> >> taking that much long term, that anything under 20mg was

> >> >> considered " low dose " , and that although it was best not to

need

> >> >> any, when you were balancing quality of life vs. the meds,

> > sometimes

> >> >> you just need to take the prednisone.

> >> >>

> >> >> So now I don't know what to think.

> >> >>

> >> >>

> >> >

> >> >

> >> >

> >> >