Re: prednisone weaning - Lynne

[Guest guest]

When I was doing it I took a little longer. If I felt bad I would not drop

it anymore, until I felt better.

I hope it goes well for you. Try not to get frustrated and just take your

time. Let your body tell you when to lower it. If you have to increase it

a little as you are coming off, don't worry about it. That happened to me.

Good Luck,

Lynn

[ ] 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.

>> >> >>

>> >> >>

>> >> >

>> >> >

>> >> >

>> >> >

[Guest guest]

,

I wish I had better advice or more examples of protocols you could use, but

there isn't a lot out there that is very specific (or maybe I simply can't

find it!).

I know there are other strategies such as those alluded to in the Merck

Medicus reference, and that's why it might be a good idea to see an

endocrinologist for help.

Rheumatologists seem to be very good at prescribing prednisone but not so

good at

helping their patients taper off.

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] prednisone weaning - Lynne

> 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,

>

>

[Guest guest]

Hi ,

Thank you SO much for the information you already gave me. I think

I'm going to try going down by 1/2mg every other week rather than 1

mg the month. I'm sure my doc won't mind me doing that.

It also was reassuring to read that many of the symptoms I'm having

are likely to be a result of the prednisone withdrawal, itself, and

NOT that the RA meds aren't working. That was what I was really

concerned about. (and I know the doctor is too) From what I read, I

think it really _is_ from the prednisone withdrawal rather than the

RA, because although my joints are getting very sore, there is no

swelling or heat.

While I'm not feeling great, it's certainly not as bad as it was

before I started being treated at all. And since this has already

been going on for almost a year, I guess I can put up with it for

another 10 months if there is a good chance that that will be the

end of it.

If it doesn't even out somewhat if I try only going down by 1/2mg, I

will ask her for a referral to an endocrinologist. It's just that

the thought of establishing a relationship with yet another Dr.

makes me cringe at this point. A year ago, I was one of those

people who hated even going to the Dr. for my annual check-up, and

now I'm on a first-name basis with all the office help and lab

technicians as well as the Doctors!<g>

>

> ,

>

> I wish I had better advice or more examples of protocols you could

use, but

> there isn't a lot out there that is very specific (or maybe I

simply can't

> find it!).

>

> I know there are other strategies such as those alluded to in the

Merck

> Medicus reference, and that's why it might be a good idea to see

an

> endocrinologist for help.

>

> Rheumatologists seem to be very good at prescribing prednisone but

not so

> good at

> helping their patients taper off.

>

>

>

> Not an MD

>

> I'll tell you where to go!

>

> Mayo Clinic in Rochester

> http://www.mayoclinic.org/rochester

>

> s Hopkins Medicine

> http://www.hopkinsmedicine.org

>

>

> [ ] prednisone weaning - Lynne

>

>

> > 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,

> >

> >

>