Re: is anyone surviving without prednisone?

[Guest guest]

I weaned myself off in 2003 after being on Pred for 2 years. I weaned very

slowly. There have been times when I think that I should have re-started but

I pushed through. My pain levels vary. I was managing with Ibuprofen and

now I rarely need that. I do think though that my Stills was the acute type

since I don't have the chronic pain like most of the others. (My heart does

go out to all of you by the way). I'm resting more and swimming more as

well.......Still have a long way to go.........

Good Luck,

Beth G

Houston

[Guest guest]

Luckily high dose Nsaids (Motrin type drugs) have helped my arthritis ,

never the fatigue that I struggled with long and short term. I Took Predisone

for

8 weeks once when I had a severe skin reaction to a medication called

s syndrome.

Quite sick,for about 8 or 9 months then do able for 2 or three months. My

arthritis did not give joint changes until recently. So, I was not treated

with steroids.

I was in the hospital for 3 weeks in 1972. Age 16

Now 50 ,and dealing some days better than others.

Hugs

Liz NJ

[Guest guest]

I have only had to be on it occassionally, I think there are a few times I

should have asked for it short-term though.......

Beth

(Houston, Teacher)

[Guest guest]

Hi, I was able to get off Prednisone many years ago. As for pain free, that

comes and goes depending on how I'm doing but I've never had to go back on the

Prednisone. Hope this helps and welcome, Melt

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[Guest guest]

,

Swimming is such a life saver for me.........Unfortunately my apartment

complex's pool isn't heated so I can only swim when it's warm enough. I might

join the UTMB gym in the cooler months as their outdoor pool is

heated...........The swimming de stresses me so much. Between work, my family

and my

outrageous son. I need all the stress relief I can get...........

Keep swimming!

Beth G

Houston

[Guest guest]

Beth,

Isn't swimming great! I get in the pool and do my stretching and it

really helps - I sure can go further stretching in the water! lol

houston

[Guest guest]

Been off prednisone for over 4 years now . Not pain free much but under

control enof I get out and do things now and then and I do enjoy not

having the side effects all the time. there are days I do wish I was

still on it when the pain just gets to much but when I get that way I

just look back at what it did to me and suffer threw it and rejoice that

I am lucky enof to live as I do with out it

Hugs

Marty

is anyone surviving without prednisone?

Hi guys

I'm new to this message board and have been reading your posts with

interest. I was wondering whether any of you have ever managed to wean

completely off prednisone and managed to stay reasonably pain-free?

My Rheumy wants me to stay on at least 5mg for a whole year even

though I'm currently in remission

[Guest guest]

Hi i've had three flare ups in the past year and have been put on prednisolone

every time, i'm on 20mg at the moment, but hoping to get tapered off them soon

as i will be starting on methotrexate, as soon as i get normal labs i think. i

hate the side affects the steroids give and can't wait to get off them.

take care all

Mumta

(Coventry, UK)

Mumta Bhutta

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[Guest guest]

Hello and Welcome;

No....I have been on high levels of Pred. for over a year and a half, almost

the entire time of my disease. I am currently

on, and have been for app. 7 months, 40 mg daily.

So far, it has cost me both hips. If you are on 5 or can completely go off,

that is a blessing. Even on 40, I have days on end of excrutiating pain! I'll

probably be on fairly high levels from now on....talk about staying " one day at

a time " , this is it. Good luck and please keep coming back.

God Bless!

Larry B. from NC

n1shanathwani wrote:

Hi guys

I'm new to this message board and have been reading your posts with

interest. I was wondering whether any of you have ever managed to wean

completely off prednisone and managed to stay reasonably pain-free?

My Rheumy wants me to stay on at least 5mg for a whole year even

though I'm currently in remission

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[Guest guest]

Hi, Yes, I've been able to avoid Pred almost completely. Admitedly, my

three-year Stills battle is a pretty weird case. I have all the classic

symptoms but pain is mild except for extremely severe seasonal flares every

fall. Early detection Methotrexate and Enbrel seem to be preventing most

damage so far. I was on non-stop ibuprofen the first two years, but lately

I've been doing without most days (I'm lucky that an occasional

hydrococadone will reduce the pain for days without side effects for me).

My rheumatologist has been very supportive of my desire to avoid

steroids as much as possible. That said, I did try a prednisone dose pack

last year when I had to finish a big project in the middle of a massive

attack. But to be honest, I only felt the benefit for a single 48 hour

period and tapered off as fast as possible when it was clear that it wasn't

making much difference. But as I say, I'm a weird case.

Best to everybody,

Steve

[Guest guest]

I have been off prednisone completely for about 6 months (except for

a short flare in March when I took a low dose for a couple of days).

I tried to get off it three times before and had to go back on it

because my pain level went too high. I have been able to function (I

work 50-60 per week as an attorney) with manageable levels of pain.

I have also lost about 40 pounds since I got off the pred (I still

have a lot more to lose, though).

I am currently taking Methotrexate and Kineret, which seem to have

taken over the job that neither could do alone without the pred.

I feel really lucky to get to the " stable sick " state where I am

now. I still have low-level joint pain every day, some fatigue, and

occasional nausea, but haven't had fevers or rash in a long time

(except for the short flare in March).

in NYC

>

> Hi, Yes, I've been able to avoid Pred almost completely.

Admitedly, my

> three-year Stills battle is a pretty weird case. I have all the

classic

> symptoms but pain is mild except for extremely severe seasonal

flares every

> fall. Early detection Methotrexate and Enbrel seem to be

preventing most

> damage so far. I was on non-stop ibuprofen the first two years,

but lately

> I've been doing without most days (I'm lucky that an occasional

> hydrococadone will reduce the pain for days without side effects

for me).

> My rheumatologist has been very supportive of my desire to

avoid

> steroids as much as possible. That said, I did try a prednisone

dose pack

> last year when I had to finish a big project in the middle of a

massive

> attack. But to be honest, I only felt the benefit for a single 48

hour

> period and tapered off as fast as possible when it was clear that

it wasn't

> making much difference. But as I say, I'm a weird case.

> Best to everybody,

> Steve

>

>

>

[Guest guest]

I don't take prednisone. When I was first diagnosed - which was at

least 4 years after initial onset - we tried prednisone via shots and

then a dose pack. I was so hot all the time, my head sweat and it

made me have worse pain. So after that tiny little trial, I haven't

tried prednisone since and never, ever, ever will. I do consider

myself a lucky one in that I never had to get on the pred path and do

the whole tapering thing. Plus I have enough weight issues, pred would

have really done damage to me in that area.

So yes, there is life without prednisone. I currently take Kineret and

MTX with Flexeril, pain killers, and Ambien added as needed - which

right now is not that often.

[Guest guest]

I managed to get off all drugs for around 15 years until this last flair

about 6 years ago. I'm now down to just the hard to shake pred and the odd

paracetamol, but I'm still working on it :-)

Graham (37)

West Sussex, UK

At 23:12 15/06/2006, you wrote:

>Hi guys

>I'm new to this message board and have been reading your posts with

>interest. I was wondering whether any of you have ever managed to wean

>completely off prednisone and managed to stay reasonably pain-free?

>My Rheumy wants me to stay on at least 5mg for a whole year even

>though I'm currently in remission