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Hi:

Just wanted to say you were lucky to get off of prednisone. I can't get off

it, tried 4 times. Went off all the way, down to nothing each time. The

pain was incredible and wouldn't stop. I had been off a whole week and had

to go back on because the Doctor said my body doesn't make any cortisone any

more since I was on prednisone so long. I have been on it for 14 years. I

have a kidney transplant and asthma and R/A which I needed prednisone for all

three. So now I have to stay on it or I can't walk and can't breath and have

too much pain if I try to stay off it. Good luck to you and take care.

Sincerely,

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Suzanne ~Fly wrote:

> Just a little funny here from someone who SHOULD have known better, but

> didn't!

> Back in May, I had a horrible outbreak of poison ivy. It was everywhere...

> yes, everywhere. I did the Calamine bit as long as I could but finally had to

> go to the doctor's and she put me on Prednisone, 20mg, 3X a day. That's 60mg!

> Hey, I teach and never seemed to find a time when none of the 2nd graders were

> watching. I remembered my days on Prenisone before. It took me 6 months to

> wean from 10mg a day down to 5, then 2.5, then 1, then .5mg, till I finally

> got off of it. Well, Dumbo here, after 4 days and feeling pretty darn good,

> was SOOOOOO excited that I just stopped it. Just like that! Within " 2 " days, I

> got up in the morning and was feeling good, till I went to brush my hair. OH!

> The pain!!!! Pain on my neck, shoulders, back, arms, EARS...... Nothing hurt

> till I touched it LIGHTLY, then OYVEY!! the pain was tremendous. This lasted

> for a couple of days till I mentioned it to my best buds,(thank you guys )and

> they asked about the Prednisone. When I told them I quit all of a sudden, I

> could feel the smacks through cyber space!!! Good thing the WEREN'T standing

> next to me! :)

> I immediately went and ate a 20mg'er and continued on 40mg/day right away,

> then weaned off of it. Since I wasn't on it for more than 4 days to start

> with, I didn't need to wean off of it for months. The pain slowly subsided but

> took about two weeks to go away completely.

> When I went off of it before, I was thinking I wished I'd never went on it in

> the first place because of the painful withdrawl. I feel for all of you who

> are trying to get off. It's rough, but please do it gradually.Someone once

> told me it takes as long to wean off as you were on it. I don't know about

> that, but I do know it will take a couple of months depending on the dosage.

> Just take your time and don't end up calling yourself a Dumbo. Leave that name

> for me! LOL

> Good luck.

>

> fly

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Hi Delaine and Everyone:

I had to write after reading your email this AM. I can really relate to your

story about prednisone. I know some people pop them like they are candy.

That really upsets me. I have been on prednisone for about 15 years or so.

I had to take them over the years because of 3 problems: Asthma, a Kidney

Transplant, and Rheumatoid Arthritis. I can't get off them. I have tried

several times. When I stop them I can hardly walk and the pain is just

unbearable. That's all for now.

Sincerely,

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  • 2 weeks later...
Guest guest

Hi, My name is . I read your email about prednisone. I have been on

it for 14 years. I have tried 4 or 5 times to get off it but I can't. I get

down to zero mg. and even after a week off of it I am in excruciating pain

that I can't even get up from a bed or a chair. Forget walking. My Doctor's

say that my body has stopped making cortisone on its own, so I have to take

the pills. I had to take it for a kidney transplant and asthma which I can

still use it for those things anyway. I have come to accept that I will

never get off of it. I get so upset when I hear about others who pop them

like candy for pain. They say they are the only things that work and get

angry if you tell them they are not pain pills. There are pain pills. If

they are in pain they should ask their Docs for pain pills. Not fool around

with prednisone. Used the wrong way it is very bad for a person. I also

have osteoporosis and cataracts from it. I wish I never had to take it.

However, I had to take them. My life mattered on it at the time. I pray

that the Docs wouldn't give them out so freely. They are afraid to give out

pain medicine when that is what is needed but they give out prednisone for

the wrong reasons and predisone can destroy your body. It just doesn't make

any sense to me at all.

Sincerely,

Anjillah@...

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:

I understand how you feel about Prednisone. I have been on it now since 1997

in varying doses as high as 60 mg. for Asthma too and then down to 30 and 20

mg. for RA. I am on my slow taper off right now. I am tapering 1mg. every

two weeks. Right now I am at 14 mg. and it is going well. I am very

discouraged though to hear that when you are down to as low as 1 mg. you

cannot get off without a flare. It is a devilish drug isn't it? I have

gained over 40 lbs on it with moon face, moon body and a big buffalo hump on

my back. Fortunately I have not lost my hair (I am also on MTX), but I have

lost the hair on my arms and legs which is great. Supposedly your adrenal

gland is to start producing its own cortisone once you get as low as 7.5mg.

of Prednisone. I am counting on things to go well.........they never did

before but I am expecting a mircle this time. There's no time like the

present for a miracle right? LOL

Jeannette

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  • 1 month later...

Prednisone is a wonder drug to be sure. I don't think there is anything

that can quite compare with it's anti-inflammatory capabilities. It acts

swiftly and surely. I have been on it for 17 years now. At differing

doses and, yes, after all of that time it has taken it's toll on my body.

I have fractured two bones by basically just twisting. Nothing serious.

I had a bone density scan as well, and it showed some bone loss, but

again nothing drastic. It does seem to affect one's mood somewhat

however. I do feel better on higher doses. Burst of energy and all of

that. Don't know if that's from just feeling no swelling/pain, or if it's

the drug itself. Weird.

I just recently had cataracts removed from both eyes too. Again, caused

by long term use of Prednisone. And I bruise easily. But overall it

could be much worse. I know that.

Jenna

FREE SPIRIT - Starlight Writers Publications

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  • 4 years later...

Theresa,

Welcome.

You need to keep in mind that prednisone effects everyone

differently as to what side effects they have. I have been on high

doses since August, 60 mg/day until 1 1/2 months ago when I started

to taper off them. You also need to weigh the good effects against

the bad. For me, if I didn't take the pred I couldn't breathe. Your

Doctor is really the best judge of this. The Doctors don't

prescribe it unless it's really necessary.

The worst thing for me has been the weight gain, 30lbs since Aug.

Also pred can make you have rapid mood swings at high doses. One

minute you are happy and the next weepy. So if this happens to you

don't think you are going crazy, it's just the pred. And these

things don't happen to everyone, your dose is quite low compared to

what a lot of us take, so you may not see any side effects. Pred

can deplete the potassium in your body, so I eat a bannana every day

for this. Low potassium can give you cramps. Pred also makes your

bones brittle, so it is probably a good idea to take calcuim and

vitamin D too.

I'm also on inhaled steroids too and use a steroid nasal spray, so

I'm really getting alot more than you will be.

There is a great book you need to read, Coping With Prednisone. You

can get it at the library or I found my copy on Amazon.com for about

$7.

--

- In , Theresa Nieman <nieman@g...>

wrote:

>

>

> I have been prescribed a low dose of prednisone, both for

polymyalgia and

> for severe allergy reduction. I am currently waiting on my

insurance about

> xolair coverage.

>

> I have read lots of discussion about the long term use of

prednisone on this

> board.

>

> BUT I have also read the DANGERS of using prednisone, and how it's

side

> effects can be horrendous and damaging.

>

> I will only be taking 5mg twice a day. At least until my sed rate

goes

> down. (it's 48)

>

>

> Can anyone give me some assurances about the effects of this drug,

what I

> can expect?

>

> Thanks

> Theresa

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Theresa,

At that low a dosage, depending on how long you have to take it of

course, you will probably only see minimal side effects. That said,

there are a few folk who experience side effects just on inhaled

steroids, which have little to no side effects for most people. In

short, people's experiences can vary.

Even on 20mg daily, I experience mood swings and a small increase in

appetite and some water retention.

If you are going to be on this small dose for more than a month, I

agree with (I think it was) - get a copy of the book Coping

with Prednisone. It has good suggestions for dealing with the

cravings.

One thing that is very important for anyone taking pred, but esp.

for women: it leaches calcium from your body. So make sure to get

additional calcium 3 times daily while you are taking it. If you

can't tolerate dairy products, ask your doctor to advise as to an

appropriate supplement.

good luck,

Addy

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  • 3 months later...
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I agree! My dog was on Prednisone for about 5 years before I started. He had 's disease. I never understood why he would bark for no reason, have horrible nightmares and periods of insomnia until I was on myself. Poor Dudley probably had reasons of food dancing around us! Now I understand why he used to eat everything in sight!Take care,Steph in VA

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~----- Original Message ----- From: Maggie > Aaaaaaaaaaaaaargh!!! Don't remind me! LOL I think for many people, weight gain is the worst side effect of prednisone use. But, that's just because it's one thing you can SEE! Nina

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One of my ferrets takes prednisone. We share pills lol. Haven't seen any side effects in him yet tho!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Maggie

http://www.4HockeyFans.com

http://www.4FloridaHockey.com

MSN: Maggies1429

AOL: Maggies85

-----Original Message-----From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ]On Behalf Of DeNicolaSent: Wednesday, April 20, 2005 9:08 AMRheumatoid Arthritis Subject: prednisone

I agree! My dog was on Prednisone for about 5 years before I started. He had 's disease. I never understood why he would bark for no reason, have horrible nightmares and periods of insomnia until I was on myself. Poor Dudley probably had reasons of food dancing around us! Now I understand why he used to eat everything in sight!Take care,Steph in VA

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A fat ferret won't be a pretty site. lol

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

From: Maggie

Rheumatoid Arthritis

Sent: Wednesday, April 20, 2005 10:35 AM

Subject: RE: prednisone

One of my ferrets takes prednisone. We share pills lol. Haven't seen any side effects in him yet tho!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Maggie

http://www.4HockeyFans.com

http://www.4FloridaHockey.com

MSN: Maggies1429

AOL: Maggies85

-----Original Message-----From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ]On Behalf Of DeNicolaSent: Wednesday, April 20, 2005 9:08 AMRheumatoid Arthritis Subject: prednisone

I agree! My dog was on Prednisone for about 5 years before I started. He had 's disease. I never understood why he would bark for no reason, have horrible nightmares and periods of insomnia until I was on myself. Poor Dudley probably had reasons of food dancing around us! Now I understand why he used to eat everything in sight!Take care,Steph in VA

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

From: Maggie

> One of my ferrets takes prednisone. We share pills lol. Haven't seen any side effects in him yet tho!

I had a dog once that took it. She sure showed side effects.

Nina

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