Re: Prednisone as maintenance

[Guest guest]

A few months ago I was cruising along pretty well with Humira, Methotrexate and 2 mg of prednisone. My doctor and I decided it was time to try and get off the Prednisone completely. I remember someone on this list had recommended a pretty detailed taper when you get down that low. Well, I didn't do it - I just cut it in half. After about 6 weeks my RA came roaring back to life. I had to up my Prednisone to 10 mg again and start a whole new taper. I'm currently holding at 5 mg and not seeing much hope of going lower since I'm hurting more these days.

Now the question is: was it better to have tried and failed or not to have tried at all? (This isn't love, after all!) I could still be holding at 2 mg and doing well instead of having kicked myself back up to a higher dosage. What dosage is considered "safe" for maintenance? I'm not sure I'll ever be able to get off it totally. While I don't now suffer from moonface, bone density loss or teeth problems I don't want to in the future. I do take precautions with calcium, doing Fosamax 1Xweekly and I do a lot of strength exercises which are supposed to help with bone density. My weight is up a bit, but not too much.

Maybe in this case the practical is preferable to the theoretical. I would like to be off prednisone, but until I can find another combo of drugs that maintains my ability to function as well as possible, I'm not willing to trade my present for an uncertain future. Am I protecting myself enough against the long-term effects of prednisone? I'm sure some people are far more prone to its ill side effects than others. Drugs affect different people differently. And if I do something different, how will I know it's possible to get off of prednisone? I have to admit that I'm a bit gunshy and it'll probably be another year or so before I get within range of trying to go off completely again.

Sorry this was so long, but I'm kind of frustrated. Love to hear others feelings on this.

gloria

[Guest guest]

In a message dated 6/28/04 10:02:20 PM, gloriarex@... writes:

And if I do something different, how will I know it's possible to get off of prednisone? I have to admit that I'm a bit gunshy and it'll probably be another year or so before I get within range of trying to go off completely again.

 

Gloria,

I just finished tapering off prednisone.

I was originally on 15 mg then tapered a few every month till I got down to 7 mg.

Then I tapered one mg per month till I got down to zero.

When I was getting down past 5, my RA slowly came back to life (I am on Imuron and humira).

With each mg tapered it got worse.

So I am not sure if tapering slowly always makes a difference.

My body misses the preddy, it took the inflammation away.

Pris

The book for the extreme pig person -

This is not Pighood 101, it's a step beyond "how to" books.

Color photos, problem solving, tricks, aggression tips.

"Potbellied Pig Behavior and Training"

www.valentinesperformingpigs.com

[Guest guest]

Pris:

So you are completely off prednisone, but not feeling very well? It sounds like you are still suffering from inflammation. Are you willing to gut it out in order to stay off the prednisone and just hope that the inflammation goes away on its own? Or that some other drug will help reduce the inflammation? I can't and won't be in that kind of pain and discomfort. I'm no baby, but I have to be able to function at a pretty high level to keep my life going. My hat is off to you if you can do it.

How long have you been off of it? Any improvements over that time?

gloria

[Guest guest]

In a message dated 6/29/04 10:21:38 AM, gloriarex@... writes:

So you are completely off prednisone, but not feeling very well? It sounds like you are still suffering from inflammation. Are you willing to gut it out in order to stay off the prednisone and just hope that the inflammation goes away on its own? Or that some other drug will help reduce the inflammation? I can't and won't be in that kind of pain and discomfort. I'm no baby, but I have to be able to function at a pretty high level to keep my life going. My hat is off to you if you can do it.

 

How long have you been off of it? Any improvements over that time?

I have been off it several months.

I could "gut it out" but don't know if I want to.

I would probably be willing to trade the side effects of preddy for being more pain free.

Since I stopped the preddy I have developed restless leg syndrome.

I have never had any side effects from the pred in 6 years.

My Dexa scan was normal.

It's as if my body NEEDS prednisone!

Should I go up to Humira weekly?

We are in the fastlane now performing all over the US.

There is no time for messing around with blood tests.

ABC new Good Morning America called to day and we will be on it performing in NYC Times Square July 26....

Pris

The book for the extreme pig person -

This is not Pighood 101, it's a step beyond "how to" books.

Color photos, problem solving, tricks, aggression tips.

"Potbellied Pig Behavior and Training"

www.valentinesperformingpigs.com

[Guest guest]

In a message dated 6/29/04 12:43:16 PM, lmthib@... writes:

What band are you in and what instrument/vocals do you perform?  I'm going to tape it and want to know.  Big news and break a leg in front of the cameras.

 

We perform with our pigs!

Valentinesperformingpigs.com

Pris

The book for the extreme pig person -

This is not Pighood 101, it's a step beyond "how to" books.

Color photos, problem solving, tricks, aggression tips.

"Potbellied Pig Behavior and Training"

www.valentinesperformingpigs.com

[Guest guest]

Pris,

Try taking niacin for the restless legs. Don't get the time release, get the regular, and start with 100 mg. before you go to bed. I've taken it for years, and it seems to work. Because exercise(walking, riding x-bike) also works to take it away, I'm guessing that it has something to do with the circulation, and niacin dilates your blood vessels. You'll get that rush of heat if you don't have something in your stomach, but that's not a big deal -- it goes away in about five minutes.

----- Original Message ----- From: NELLIESTAR@...

Rheumatoid Arthritis

Sent: Tuesday, June 29, 2004 2:41 PM

Subject: Re: Prednisone as maintenance

In a message dated 6/29/04 10:21:38 AM, gloriarex@... writes:

So you are completely off prednisone, but not feeling very well? It sounds like you are still suffering from inflammation. Are you willing to gut it out in order to stay off the prednisone and just hope that the inflammation goes away on its own? Or that some other drug will help reduce the inflammation? I can't and won't be in that kind of pain and discomfort. I'm no baby, but I have to be able to function at a pretty high level to keep my life going. My hat is off to you if you can do it. How long have you been off of it? Any improvements over that time?I have been off it several months.I could "gut it out" but don't know if I want to.I would probably be willing to trade the side effects of preddy for being more pain free.Since I stopped the preddy I have developed restless leg syndrome. I have never had any side effects from the pred in 6 years.My Dexa scan was normal.It's as if my body NEEDS prednisone!Should I go up to Humira weekly?We are in the fastlane now performing all over the US.There is no time for messing around with blood tests.ABC new Good Morning America called to day and we will be on it performing in NYC Times Square July 26....PrisThe book for the extreme pig person -This is not Pighood 101, it's a step beyond "how to" books.Color photos, problem solving, tricks, aggression tips."Potbellied Pig Behavior and Training"www.valentinesperformingpigs.com

[Guest guest]

We are in the fastlane now performing all over the US.There is no time for messing around with blood tests.ABC new Good Morning America called to day and we will be on it performing in NYC Times Square July 26....Pris

Pris,

What band are you in and what instrument/vocals do you perform? I'm going to tape it and want to know. Big news and break a leg in front of the cameras.

Congrats,

Lynette

[Guest guest]

Gloria,

The same thing happened to me at first on lowering prednisone. But I was very DETERMINED and even though I had to go up again for a bit I also pursued in the lowering effort. Maybe next try you can go a bit slower. It does get much harder down below 3 mg. and it took me a while back and forth a bit but I don't have red hair for nothing! Ha! Hang in there and keep up the positive attitude because that is VITAL to keep up the fight!!!!

Good luck to you,

Kay

----- Original Message -----

From: gloriarex@...

Rheumatoid Arthritis

Sent: Tuesday, June 29, 2004 12:01 AM

Subject: Re: Prednisone as maintenance

A few months ago I was cruising along pretty well with Humira, Methotrexate and 2 mg of prednisone. My doctor and I decided it was time to try and get off the Prednisone completely. I remember someone on this list had recommended a pretty detailed taper when you get down that low. Well, I didn't do it - I just cut it in half. After about 6 weeks my RA came roaring back to life. I had to up my Prednisone to 10 mg again and start a whole new taper. I'm currently holding at 5 mg and not seeing much hope of going lower since I'm hurting more these days.

Now the question is: was it better to have tried and failed or not to have tried at all? (This isn't love, after all!) I could still be holding at 2 mg and doing well instead of having kicked myself back up to a higher dosage. What dosage is considered "safe" for maintenance? I'm not sure I'll ever be able to get off it totally. While I don't now suffer from moonface, bone density loss or teeth problems I don't want to in the future. I do take precautions with calcium, doing Fosamax 1Xweekly and I do a lot of strength exercises which are supposed to help with bone density. My weight is up a bit, but not too much.

Maybe in this case the practical is preferable to the theoretical. I would like to be off prednisone, but until I can find another combo of drugs that maintains my ability to function as well as possible, I'm not willing to trade my present for an uncertain future. Am I protecting myself enough against the long-term effects of prednisone? I'm sure some people are far more prone to its ill side effects than others. Drugs affect different people differently. And if I do something different, how will I know it's possible to get off of prednisone? I have to admit that I'm a bit gunshy and it'll probably be another year or so before I get within range of trying to go off completely again.

Sorry this was so long, but I'm kind of frustrated. Love to hear others feelings on this.

gloria