Re: Weaning off Prednisone

[Guest guest]

Hi Mel! Geoff Crenshaw here.

> Message: 25

> Date: Sun, 18 Mar 2001 15:59:33 +1200

> From: Mel <pelmels@...>

> Subject: Weaning Off Prednisone

>

> to the list also as I am a 15 year plus prednisone user. Geoffs 1 mg

> drop for us 'oldie' or should I say " long term prednisone users " is

> just too hard (in my experience)

I'm afraid you misread the routine:

Step SEVEN specifically cuts the drop rate to 1/2mg.

Step ELEVEN changes the periods between doses routine such that the

drop is manifested due to the dosing regimen.

Step SEVENTEEN cuts the drops to 1/4 mg

You are not reading nor quoting the routine properly.

Regards, -----------------------

Geoff ** Usual Disclaimers **

-----------------------

How can you have hope?

Get under the blood of the Passover Lamb.

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[Guest guest]

hi margret I know how you feel I have been gradualy coming off the prednisilone foe a while now and the fatigue has returned. the moon face etc has gone I didnt get the buffalo hump though. My doctor said It could take asbout six months for the symptoms to go away, but they will acording to him. cheryl.

[ ] Weaning off Prednisone

Good Morning,I have been on prednisone since February for Autoimmune hepatits and have had all of the 'bad" reactions. I started the weaning process 2 weeks ago and now I feel even worse.This week end I developed shortness of breath that is very scary, a hump on my upper back and the depression is just awful. I have put on about 20 pounds from the waist up. Sleep is nul without a pill to help at night. I have the "moon" face, a redness to my face and chest. How long does it take for these symptoms to go away after stopping the prednisone? My family has been very supportive and wonderful and I love them very much for this. The only symptom I had before starting this treatment was fatigue and elevated liver enyzmes found on a physical. I would love any information anyone can give me. Margaret

[Guest guest]

Margaret------ isn't this prednisone disgusting????

I get the same awful side effects. They seem quick to

arrive and somehow slow to subside -- at least it

seems that way to me.

The depression IS awful isn't it. I know a man who is

on prednisone for his arthritis and -- he's as thin as

a rake!!!!!! Mind you he also lives with so much

pain that I think I'd rather be " cuddly " .

My first session of prednisone started at 40mg and was

reduced fairly quickly - that was about 2 years ago. I

have fought against having to go back on until Jan

2002 when I developed autoimmune related leg sores

(pyoderma gangrenosum) and this necessitated starting

up again -- theywanted me to have 60mg but in the end

we compromised and started on 30mg. I am a bit awful

as I have an official dose and an actual dose. The

actual dose is always 5mg less than what they tell me

to take!!! That is howdesperate I can get. However

---- it is not really a good idea, one day I may get

into strife over it. However, at the moment I feel

good (except for my looks) and have blood tests this

week and a visit to my gastroenterologist on Friday

(he's a sweetie).

Caroline (NZ)

--- mmombeers <Mmombeers@...> wrote:

> Good Morning,

> I have been on prednisone since February for

> Autoimmune hepatits and

> have had all of the 'bad " reactions. I started the

> weaning process 2

> weeks ago and now I feel even worse.

> This week end I developed shortness of breath that

> is very scary, a

> hump on my upper back and the depression is just

> awful. I have put

> on about 20 pounds from the waist up. Sleep is nul

> without a pill to

> help at night. I have the " moon " face, a redness to

> my face and

> chest.

> How long does it take for these symptoms to go

> away after stopping

> the prednisone?

> My family has been very supportive and wonderful

> and I love them

> very much for this.

> The only symptom I had before starting this

> treatment was fatigue

> and elevated liver enyzmes found on a physical.

> I would love any information anyone can give me.

> Margaret

>

>

>

__________________________________________________

[Guest guest]

Margaret...

Yes you are experiencing what alot of people do when they wean down or off pred....the secret is to wean very....very....VERY slowly......it should take months to come off this med....little at a time....

Pred is something that we produce..although I don't think that is what it is called when we are producing it....but anyways....when you are put on a dose it causes our system to cut back on the production...so when you wean off you have to do it slowly so that your body has time to start producing again...little at a time....

So many are weaned down or off too quickly and find themselves back on it again...can become a viscous cycle. Hope you feel better....

take care and talk soon

Luanne Ty's mom

[Guest guest]

oh vikki... do i know the feeling of a starving lion... ha ha ha... i have

gained 30 pounds since the diagnosis... about last july.... i was put on 40 mg a

day.. for a few months, then down from there... i am doing 7.5 mg a day now...

we started a eat healthy diet today... so i sure hope that is going to help.....

something has to give, and i sure hope it is not going to be my britches... ha

ha ha

rae..

[ ] sulfasalazine ? and more

All my doctors have told me that I have to get off Prednesone, so I'm trying

again. It seems that I drop from my normal 10 mg to 9 mg, and I can't get

past the pain that I suffer. It's a small decrease, but it whips me every

time. Today I'm hurting from my hair to toenails. Does anyone have a trick

or advice for me, or do I just suffer through it?

I'm looking at possible meds my Rheumy will prescribe for me after talking

to his nurse and having a list he gave me of the meds. Why would he

prescribe the sulfasalazine for my RA, and not Crohn's, which I don't have?

The other meds on his list are Plaquenil and azathioprine. Which of the 3 is

better or are they all basically the same?

Ken, I've had this mess for 15 years and remember having almost the same

dragging, boring time you're talking about. For a long while, I moved the

bed into the living room. That way I didn't have to walk much at all. One

thing I did to help me was to get a motorcycle, a Honda Gold Wing. When I

needed fresh air, I'd jump on it. Well, I kinda crawled to it, actually. It

has cruise control and reverse, so it's not much of a problem to operate,

and the fresh air and beautiful surroundings make you forget about your

problems for a while. It worked for me because it was a distraction that

helped. Now, after turning the bike into a trike so it won't fall over, I'm

into building my race car and things like that. You've got to do something,

even if it's just playing games on your new computer. That's another thing I

do. I build my own computers, write programs for them, and do other work on

them.

Dennis

[Guest guest]

oh vikki... do i know the feeling of a starving lion... ha ha ha... i have

gained 30 pounds since the diagnosis... about last july.... i was put on 40 mg a

day.. for a few months, then down from there... i am doing 7.5 mg a day now...

we started a eat healthy diet today... so i sure hope that is going to help.....

something has to give, and i sure hope it is not going to be my britches... ha

ha ha

rae..

[ ] sulfasalazine ? and more

All my doctors have told me that I have to get off Prednesone, so I'm trying

again. It seems that I drop from my normal 10 mg to 9 mg, and I can't get

past the pain that I suffer. It's a small decrease, but it whips me every

time. Today I'm hurting from my hair to toenails. Does anyone have a trick

or advice for me, or do I just suffer through it?

I'm looking at possible meds my Rheumy will prescribe for me after talking

to his nurse and having a list he gave me of the meds. Why would he

prescribe the sulfasalazine for my RA, and not Crohn's, which I don't have?

The other meds on his list are Plaquenil and azathioprine. Which of the 3 is

better or are they all basically the same?

Ken, I've had this mess for 15 years and remember having almost the same

dragging, boring time you're talking about. For a long while, I moved the

bed into the living room. That way I didn't have to walk much at all. One

thing I did to help me was to get a motorcycle, a Honda Gold Wing. When I

needed fresh air, I'd jump on it. Well, I kinda crawled to it, actually. It

has cruise control and reverse, so it's not much of a problem to operate,

and the fresh air and beautiful surroundings make you forget about your

problems for a while. It worked for me because it was a distraction that

helped. Now, after turning the bike into a trike so it won't fall over, I'm

into building my race car and things like that. You've got to do something,

even if it's just playing games on your new computer. That's another thing I

do. I build my own computers, write programs for them, and do other work on

them.

Dennis

[Guest guest]

Hi Rae,

I hope your britches don't give either!!! <tee hee> The weight gain was the

worst part of the prednisone side effects for me. At least I didn't have the

mood swings and some of the other nastier side effects.

Over the course of 3 years, my dosage varied from 5mg to 20mg. After I realized

what a sneaky drug predinsone is - helping you in the short term and hurting you

in the long term - I decided to get off of it permanently.

It's been tough to get off of it, but I'm determined. It didn't help that I had

to go on a pred dose pack when I got strep throat and my throat started to swell

a few weeks ago (Eight 4mg pills the first day, then 7, 6,etc.), but I will be

pred-free very soon. Now if I can just drop this extra weight...

Vikki

[ ] sulfasalazine ? and more

All my doctors have told me that I have to get off Prednesone, so I'm

trying

again. It seems that I drop from my normal 10 mg to 9 mg, and I can't get

past the pain that I suffer. It's a small decrease, but it whips me every

time. Today I'm hurting from my hair to toenails. Does anyone have a trick

or advice for me, or do I just suffer through it?

I'm looking at possible meds my Rheumy will prescribe for me after talking

to his nurse and having a list he gave me of the meds. Why would he

prescribe the sulfasalazine for my RA, and not Crohn's, which I don't

have?

The other meds on his list are Plaquenil and azathioprine. Which of the 3

is

better or are they all basically the same?

Ken, I've had this mess for 15 years and remember having almost the same

dragging, boring time you're talking about. For a long while, I moved the

bed into the living room. That way I didn't have to walk much at all. One

thing I did to help me was to get a motorcycle, a Honda Gold Wing. When I

needed fresh air, I'd jump on it. Well, I kinda crawled to it, actually.

It

has cruise control and reverse, so it's not much of a problem to operate,

and the fresh air and beautiful surroundings make you forget about your

problems for a while. It worked for me because it was a distraction that

helped. Now, after turning the bike into a trike so it won't fall over,

I'm

into building my race car and things like that. You've got to do

something,

even if it's just playing games on your new computer. That's another thing

I

do. I build my own computers, write programs for them, and do other work

on

them.

Dennis

[Guest guest]

Hi Rae,

I hope your britches don't give either!!! <tee hee> The weight gain was the

worst part of the prednisone side effects for me. At least I didn't have the

mood swings and some of the other nastier side effects.

Over the course of 3 years, my dosage varied from 5mg to 20mg. After I realized

what a sneaky drug predinsone is - helping you in the short term and hurting you

in the long term - I decided to get off of it permanently.

It's been tough to get off of it, but I'm determined. It didn't help that I had

to go on a pred dose pack when I got strep throat and my throat started to swell

a few weeks ago (Eight 4mg pills the first day, then 7, 6,etc.), but I will be

pred-free very soon. Now if I can just drop this extra weight...

Vikki

[ ] sulfasalazine ? and more

All my doctors have told me that I have to get off Prednesone, so I'm

trying

again. It seems that I drop from my normal 10 mg to 9 mg, and I can't get

past the pain that I suffer. It's a small decrease, but it whips me every

time. Today I'm hurting from my hair to toenails. Does anyone have a trick

or advice for me, or do I just suffer through it?

I'm looking at possible meds my Rheumy will prescribe for me after talking

to his nurse and having a list he gave me of the meds. Why would he

prescribe the sulfasalazine for my RA, and not Crohn's, which I don't

have?

The other meds on his list are Plaquenil and azathioprine. Which of the 3

is

better or are they all basically the same?

Ken, I've had this mess for 15 years and remember having almost the same

dragging, boring time you're talking about. For a long while, I moved the

bed into the living room. That way I didn't have to walk much at all. One

thing I did to help me was to get a motorcycle, a Honda Gold Wing. When I

needed fresh air, I'd jump on it. Well, I kinda crawled to it, actually.

It

has cruise control and reverse, so it's not much of a problem to operate,

and the fresh air and beautiful surroundings make you forget about your

problems for a while. It worked for me because it was a distraction that

helped. Now, after turning the bike into a trike so it won't fall over,

I'm

into building my race car and things like that. You've got to do

something,

even if it's just playing games on your new computer. That's another thing

I

do. I build my own computers, write programs for them, and do other work

on

them.

Dennis

[Guest guest]

I too can sympathize with you both........i am on 5 mg

a day but have decided to try to get off that because

of the weight gain.......i am taking it every other

day now........and hope to be off it soon. Then

hopefully some of these extra pounds will come off.

Pat in So Ore

--- Vikki Wingfield <VWAvon@...> wrote:

> Hi Rae,

>

> I hope your britches don't give either!!! <tee

> hee> The weight gain was the worst part of the

> prednisone side effects for me. At least I didn't

> have the mood swings and some of the other nastier

> side effects.

>

> Over the course of 3 years, my dosage varied from

> 5mg to 20mg. After I realized what a sneaky drug

> predinsone is - helping you in the short term and

> hurting you in the long term - I decided to get off

> of it permanently.

>

> It's been tough to get off of it, but I'm

> determined. It didn't help that I had to go on a

> pred dose pack when I got strep throat and my throat

> started to swell a few weeks ago (Eight 4mg pills

> the first day, then 7, 6,etc.), but I will be

> pred-free very soon. Now if I can just drop this

> extra weight...

>

> Vikki

> [ ] sulfasalazine ? and more

>

>

> All my doctors have told me that I have to get

> off Prednesone, so I'm trying

> again. It seems that I drop from my normal 10

> mg to 9 mg, and I can't get

> past the pain that I suffer. It's a small

> decrease, but it whips me every

> time. Today I'm hurting from my hair to

> toenails. Does anyone have a trick

> or advice for me, or do I just suffer through

> it?

>

> I'm looking at possible meds my Rheumy will

> prescribe for me after talking

> to his nurse and having a list he gave me of

> the meds. Why would he

> prescribe the sulfasalazine for my RA, and not

> Crohn's, which I don't have?

> The other meds on his list are Plaquenil and

> azathioprine. Which of the 3 is

> better or are they all basically the same?

>

> Ken, I've had this mess for 15 years and

> remember having almost the same

> dragging, boring time you're talking about.

> For a long while, I moved the

> bed into the living room. That way I didn't

> have to walk much at all. One

> thing I did to help me was to get a

> motorcycle, a Honda Gold Wing. When I

> needed fresh air, I'd jump on it. Well, I

> kinda crawled to it, actually. It

> has cruise control and reverse, so it's not

> much of a problem to operate,

> and the fresh air and beautiful surroundings

> make you forget about your

> problems for a while. It worked for me because

> it was a distraction that

> helped. Now, after turning the bike into a

> trike so it won't fall over, I'm

> into building my race car and things like

> that. You've got to do something,

> even if it's just playing games on your new

> computer. That's another thing I

> do. I build my own computers, write programs

> for them, and do other work on

> them.

>

> Dennis

>

>

>

>

>

[Guest guest]

I too can sympathize with you both........i am on 5 mg

a day but have decided to try to get off that because

of the weight gain.......i am taking it every other

day now........and hope to be off it soon. Then

hopefully some of these extra pounds will come off.

Pat in So Ore

--- Vikki Wingfield <VWAvon@...> wrote:

> Hi Rae,

>

> I hope your britches don't give either!!! <tee

> hee> The weight gain was the worst part of the

> prednisone side effects for me. At least I didn't

> have the mood swings and some of the other nastier

> side effects.

>

> Over the course of 3 years, my dosage varied from

> 5mg to 20mg. After I realized what a sneaky drug

> predinsone is - helping you in the short term and

> hurting you in the long term - I decided to get off

> of it permanently.

>

> It's been tough to get off of it, but I'm

> determined. It didn't help that I had to go on a

> pred dose pack when I got strep throat and my throat

> started to swell a few weeks ago (Eight 4mg pills

> the first day, then 7, 6,etc.), but I will be

> pred-free very soon. Now if I can just drop this

> extra weight...

>

> Vikki

> [ ] sulfasalazine ? and more

>

>

> All my doctors have told me that I have to get

> off Prednesone, so I'm trying

> again. It seems that I drop from my normal 10

> mg to 9 mg, and I can't get

> past the pain that I suffer. It's a small

> decrease, but it whips me every

> time. Today I'm hurting from my hair to

> toenails. Does anyone have a trick

> or advice for me, or do I just suffer through

> it?

>

> I'm looking at possible meds my Rheumy will

> prescribe for me after talking

> to his nurse and having a list he gave me of

> the meds. Why would he

> prescribe the sulfasalazine for my RA, and not

> Crohn's, which I don't have?

> The other meds on his list are Plaquenil and

> azathioprine. Which of the 3 is

> better or are they all basically the same?

>

> Ken, I've had this mess for 15 years and

> remember having almost the same

> dragging, boring time you're talking about.

> For a long while, I moved the

> bed into the living room. That way I didn't

> have to walk much at all. One

> thing I did to help me was to get a

> motorcycle, a Honda Gold Wing. When I

> needed fresh air, I'd jump on it. Well, I

> kinda crawled to it, actually. It

> has cruise control and reverse, so it's not

> much of a problem to operate,

> and the fresh air and beautiful surroundings

> make you forget about your

> problems for a while. It worked for me because

> it was a distraction that

> helped. Now, after turning the bike into a

> trike so it won't fall over, I'm

> into building my race car and things like

> that. You've got to do something,

> even if it's just playing games on your new

> computer. That's another thing I

> do. I build my own computers, write programs

> for them, and do other work on

> them.

>

> Dennis

>

>

>

>

>

[Guest guest]

Hi everyone I'm new here so please bear with me but this is a topic

I'm also I struggling with and would like to join in. Before I go into a

lot of detail about myself I would like to test the waters. I posted

to another group and didn't feel like I was understood or welcome. So

here goes. My first question does my email show up each time I post

and if so can I do

something to make it private. Jan

--- In , " Rae Sandberg " <Raes_Yorkies@s...>

wrote:

> oh vikki... do i know the feeling of a starving lion... ha ha ha...

i have gained 30 pounds since the diagnosis... about last july.... i

was put on 40 mg a day.. for a few months, then down from there... i

am doing 7.5 mg a day now...

> we started a eat healthy diet today... so i sure hope that is going

to help..... something has to give, and i sure hope it is not going to

be my britches... ha ha ha

>

>

> rae..

>

> [ ] sulfasalazine ? and more

>

>

> All my doctors have told me that I have to get off Prednesone,

so I'm trying

> again. It seems that I drop from my normal 10 mg to 9 mg, and I

can't get

> past the pain that I suffer. It's a small decrease, but it whips

me every

> time. Today I'm hurting from my hair to toenails. Does anyone

have a trick

> or advice for me, or do I just suffer through it?

>

> I'm looking at possible meds my Rheumy will prescribe for me

after talking

> to his nurse and having a list he gave me of the meds. Why

would he

> prescribe the sulfasalazine for my RA, and not Crohn's, which I

don't have?

> The other meds on his list are Plaquenil and azathioprine. Which

of the 3 is

> better or are they all basically the same?

>

> Ken, I've had this mess for 15 years and remember having almost

the same

> dragging, boring time you're talking about. For a long while, I

moved the

> bed into the living room. That way I didn't have to walk much at

all. One

> thing I did to help me was to get a motorcycle, a Honda Gold

Wing. When I

> needed fresh air, I'd jump on it. Well, I kinda crawled to it,

actually. It

> has cruise control and reverse, so it's not much of a problem to

operate,

> and the fresh air and beautiful surroundings make you forget

about your

> problems for a while. It worked for me because it was a

distraction that

> helped. Now, after turning the bike into a trike so it won't

fall over, I'm

> into building my race car and things like that. You've got to do

something,

> even if it's just playing games on your new computer. That's

another thing I

> do. I build my own computers, write programs for them, and do

other work on

> them.

>

> Dennis

>

>

>

>

>

[Guest guest]

Hi everyone I'm new here so please bear with me but this is a topic

I'm also I struggling with and would like to join in. Before I go into a

lot of detail about myself I would like to test the waters. I posted

to another group and didn't feel like I was understood or welcome. So

here goes. My first question does my email show up each time I post

and if so can I do

something to make it private. Jan

> oh vikki... do i know the feeling of a starving lion... ha ha ha...

i have gained 30 pounds since the diagnosis... about last july.... i

was put on 40 mg a day.. for a few months, then down from there... i

am doing 7.5 mg a day now...

> we started a eat healthy diet today... so i sure hope that is going

to help..... something has to give, and i sure hope it is not going to

be my britches... ha ha ha

>

>

> rae..

>

> [ ] sulfasalazine ? and more

>

>

> All my doctors have told me that I have to get off Prednesone,

so I'm trying

> again. It seems that I drop from my normal 10 mg to 9 mg, and I

can't get

> past the pain that I suffer. It's a small decrease, but it whips

me every

> time. Today I'm hurting from my hair to toenails. Does anyone

have a trick

> or advice for me, or do I just suffer through it?

>

> I'm looking at possible meds my Rheumy will prescribe for me

after talking

> to his nurse and having a list he gave me of the meds. Why

would he

> prescribe the sulfasalazine for my RA, and not Crohn's, which I

don't have?

> The other meds on his list are Plaquenil and azathioprine. Which

of the 3 is

> better or are they all basically the same?

>

> Ken, I've had this mess for 15 years and remember having almost

the same

> dragging, boring time you're talking about. For a long while, I

moved the

> bed into the living room. That way I didn't have to walk much at

all. One

> thing I did to help me was to get a motorcycle, a Honda Gold

Wing. When I

> needed fresh air, I'd jump on it. Well, I kinda crawled to it,

actually. It

> has cruise control and reverse, so it's not much of a problem to

operate,

> and the fresh air and beautiful surroundings make you forget

about your

> problems for a while. It worked for me because it was a

distraction that

> helped. Now, after turning the bike into a trike so it won't

fall over, I'm

> into building my race car and things like that. You've got to do

something,

> even if it's just playing games on your new computer. That's

another thing I

> do. I build my own computers, write programs for them, and do

other work on

> them.

>

> Dennis

>

>

>

>

>

[Guest guest]

we will be a funny site, all of our britches ripped out in the seat! if we all

counted the weight gain in this group, we probably made a whole new person...

haha ha ha ha

rae *waiting for this afternoon*

to be exact 2:45pm )

[ ] sulfasalazine ? and more

>

>

> All my doctors have told me that I have to get

> off Prednesone, so I'm trying

> again. It seems that I drop from my normal 10

> mg to 9 mg, and I can't get

> past the pain that I suffer. It's a small

> decrease, but it whips me every

> time. Today I'm hurting from my hair to

> toenails. Does anyone have a trick

> or advice for me, or do I just suffer through

> it?

>

> I'm looking at possible meds my Rheumy will

> prescribe for me after talking

> to his nurse and having a list he gave me of

> the meds. Why would he

> prescribe the sulfasalazine for my RA, and not

> Crohn's, which I don't have?

> The other meds on his list are Plaquenil and

> azathioprine. Which of the 3 is

> better or are they all basically the same?

>

> Ken, I've had this mess for 15 years and

> remember having almost the same

> dragging, boring time you're talking about.

> For a long while, I moved the

> bed into the living room. That way I didn't

> have to walk much at all. One

> thing I did to help me was to get a

> motorcycle, a Honda Gold Wing. When I

> needed fresh air, I'd jump on it. Well, I

> kinda crawled to it, actually. It

> has cruise control and reverse, so it's not

> much of a problem to operate,

> and the fresh air and beautiful surroundings

> make you forget about your

> problems for a while. It worked for me because

> it was a distraction that

> helped. Now, after turning the bike into a

> trike so it won't fall over, I'm

> into building my race car and things like

> that. You've got to do something,

> even if it's just playing games on your new

> computer. That's another thing I

> do. I build my own computers, write programs

> for them, and do other work on

> them.

>

> Dennis

>

>

>

>

>

[Guest guest]

we will be a funny site, all of our britches ripped out in the seat! if we all

counted the weight gain in this group, we probably made a whole new person...

haha ha ha ha

rae *waiting for this afternoon*

to be exact 2:45pm )

[ ] sulfasalazine ? and more

>

>

> All my doctors have told me that I have to get

> off Prednesone, so I'm trying

> again. It seems that I drop from my normal 10

> mg to 9 mg, and I can't get

> past the pain that I suffer. It's a small

> decrease, but it whips me every

> time. Today I'm hurting from my hair to

> toenails. Does anyone have a trick

> or advice for me, or do I just suffer through

> it?

>

> I'm looking at possible meds my Rheumy will

> prescribe for me after talking

> to his nurse and having a list he gave me of

> the meds. Why would he

> prescribe the sulfasalazine for my RA, and not

> Crohn's, which I don't have?

> The other meds on his list are Plaquenil and

> azathioprine. Which of the 3 is

> better or are they all basically the same?

>

> Ken, I've had this mess for 15 years and

> remember having almost the same

> dragging, boring time you're talking about.

> For a long while, I moved the

> bed into the living room. That way I didn't

> have to walk much at all. One

> thing I did to help me was to get a

> motorcycle, a Honda Gold Wing. When I

> needed fresh air, I'd jump on it. Well, I

> kinda crawled to it, actually. It

> has cruise control and reverse, so it's not

> much of a problem to operate,

> and the fresh air and beautiful surroundings

> make you forget about your

> problems for a while. It worked for me because

> it was a distraction that

> helped. Now, after turning the bike into a

> trike so it won't fall over, I'm

> into building my race car and things like

> that. You've got to do something,

> even if it's just playing games on your new

> computer. That's another thing I

> do. I build my own computers, write programs

> for them, and do other work on

> them.

>

> Dennis

>

>

>

>

>

[Guest guest]

I have been on predisone for 24 years. Yikes! I have been on various

doseages during that time. I was recently down to 2.5mg and now having

a bad flare. Dr has me doing a dose pack of 20 for 5days then 15 for 5

days then 10 then 5 etc. It really depresses me that I was down to

2.5 and now have to do this. Jan

-- In , " Rae Sandberg " <Raes_Yorkies@s...>

wrote:

> we will be a funny site, all of our britches ripped out in the seat!

if we all counted the weight gain in this group, we probably made a

whole new person... haha ha ha ha

>

> rae *waiting for this afternoon*

> to be exact 2:45pm )

>

> [ ] sulfasalazine ? and more

> >

> >

> > All my doctors have told me that I have to get

> > off Prednesone, so I'm trying

> > again. It seems that I drop from my normal 10

> > mg to 9 mg, and I can't get

> > past the pain that I suffer. It's a small

> > decrease, but it whips me every

> > time. Today I'm hurting from my hair to

> > toenails. Does anyone have a trick

> > or advice for me, or do I just suffer through

> > it?

> >

> > I'm looking at possible meds my Rheumy will

> > prescribe for me after talking

> > to his nurse and having a list he gave me of

> > the meds. Why would he

> > prescribe the sulfasalazine for my RA, and not

> > Crohn's, which I don't have?

> > The other meds on his list are Plaquenil and

> > azathioprine. Which of the 3 is

> > better or are they all basically the same?

> >

> > Ken, I've had this mess for 15 years and

> > remember having almost the same

> > dragging, boring time you're talking about.

> > For a long while, I moved the

> > bed into the living room. That way I didn't

> > have to walk much at all. One

> > thing I did to help me was to get a

> > motorcycle, a Honda Gold Wing. When I

> > needed fresh air, I'd jump on it. Well, I

> > kinda crawled to it, actually. It

> > has cruise control and reverse, so it's not

> > much of a problem to operate,

> > and the fresh air and beautiful surroundings

> > make you forget about your

> > problems for a while. It worked for me because

> > it was a distraction that

> > helped. Now, after turning the bike into a

> > trike so it won't fall over, I'm

> > into building my race car and things like

> > that. You've got to do something,

> > even if it's just playing games on your new

> > computer. That's another thing I

> > do. I build my own computers, write programs

> > for them, and do other work on

> > them.

> >

> > Dennis

> >

> >

> >

> >

> >

[Guest guest]

I have been on predisone for 24 years. Yikes! I have been on various

doseages during that time. I was recently down to 2.5mg and now having

a bad flare. Dr has me doing a dose pack of 20 for 5days then 15 for 5

days then 10 then 5 etc. It really depresses me that I was down to

2.5 and now have to do this. Jan

-- In , " Rae Sandberg " <Raes_Yorkies@s...>

wrote:

> we will be a funny site, all of our britches ripped out in the seat!

if we all counted the weight gain in this group, we probably made a

whole new person... haha ha ha ha

>

> rae *waiting for this afternoon*

> to be exact 2:45pm )

>

> [ ] sulfasalazine ? and more

> >

> >

> > All my doctors have told me that I have to get

> > off Prednesone, so I'm trying

> > again. It seems that I drop from my normal 10

> > mg to 9 mg, and I can't get

> > past the pain that I suffer. It's a small

> > decrease, but it whips me every

> > time. Today I'm hurting from my hair to

> > toenails. Does anyone have a trick

> > or advice for me, or do I just suffer through

> > it?

> >

> > I'm looking at possible meds my Rheumy will

> > prescribe for me after talking

> > to his nurse and having a list he gave me of

> > the meds. Why would he

> > prescribe the sulfasalazine for my RA, and not

> > Crohn's, which I don't have?

> > The other meds on his list are Plaquenil and

> > azathioprine. Which of the 3 is

> > better or are they all basically the same?

> >

> > Ken, I've had this mess for 15 years and

> > remember having almost the same

> > dragging, boring time you're talking about.

> > For a long while, I moved the

> > bed into the living room. That way I didn't

> > have to walk much at all. One

> > thing I did to help me was to get a

> > motorcycle, a Honda Gold Wing. When I

> > needed fresh air, I'd jump on it. Well, I

> > kinda crawled to it, actually. It

> > has cruise control and reverse, so it's not

> > much of a problem to operate,

> > and the fresh air and beautiful surroundings

> > make you forget about your

> > problems for a while. It worked for me because

> > it was a distraction that

> > helped. Now, after turning the bike into a

> > trike so it won't fall over, I'm

> > into building my race car and things like

> > that. You've got to do something,

> > even if it's just playing games on your new

> > computer. That's another thing I

> > do. I build my own computers, write programs

> > for them, and do other work on

> > them.

> >

> > Dennis

> >

> >

> >

> >

> >

[Guest guest]

i've been on 5 mgs for almost 2 yrs now. with moon face and gained about 20

lbs!!!!!

kathy in il

[Guest guest]

i've been on 5 mgs for almost 2 yrs now. with moon face and gained about 20

lbs!!!!!

kathy in il

[Guest guest]

Hi, I too have R/A & Scleroderma. I refused to start on prednisone and talked

my connective tissue doctor into giving me minocin last December, (against it,

he gave it unwillingly to pacify me.) Meanwhile, I made an appointment, (my

first) with Dr. Trentham who said he preferred me to get off the plaquenil I was

also on. Right after I started the mino, my hands & ankles also started to

swell and I had pain. I also got double vision & itches. My hands started to

curl into a " C " configuration making a circle when the tips of the fingers

touched together. But I stuck it out and little by little it started to get

better and better and better. I still have puffy wrists & ankles. But my

raynaud's if gone. My fingers are no longer curling. Rarely have pain and the

double vision I had till a month ago is gone. I saw Dr. Trentham on June 26th

and he was pleased with my progress. He drew some blood and I am supposed to

call for the results, but I have been so busy this

week, I haven't called. Have a free day on Friday. I hear it is a long journey

to good health, so I am happy with my progress and I have photos and testimony

from people who have been on Mino for 5 years and they are back to work and

being real human beings with a real life. Yes, I sometimes get tired and head

for a nap when I can or just close my eyes for a little while. Once in a while

I take a valium 5 mg. and that calms down my whole system as that is a muscle

relaxer. Some people take a robaxin or some such relaxer. My goal is to go

into remission, no matter how long it takes and I will eventually try other

protocols. But Mino is the simplest one to follow for now. I practise with

foods and am slowly finding out which ones give me heartburn. I take probiotics

when I need them. On the whole, my husband says Mino is working. Last year, I

could barely roll over in bed. Now, I'm up & out and about every day. I am a

nurse and I look forward to going back to work

part time next month. I am also planning a cruise to the Caribbean this winter

and if all is well, I will go to see my cousin in Germany next summer. We have

been planning to visit Amsterdam, Paris, Barcelona and London. I also have a

friend in Ireland and if she is not sailing on her boat, I will go to Cork

County and visit her too. The main thing with these diseases is to think

positively. Plan for the future, but live in the present and live each day as

though it is a gift, which it is. We were never meant to be permanent residents

of this world. And no one knows how many days they have. So, live well, eat

well, be happy and treat yourself as well as you treat your guests. Make friends

and have compassion. The greatest give is love. Pass it around. Love to all

from Dolores in NYC, NY. No, I can't buy a goat nor keep it in an apartment,

but I can go to whole foods which is where I have started to do all my shopping.

I even bought live lettuce today with the

roots still intact. My first instinct was to plant it. My second one was to

make a salad with it and nourish my body. I chose the latter. Have a better day

every day. D.

merriams_rcn_com <merriams@...> wrote: Hi everyone,

I was wondering if anyone can tell me if there are any symptoms

associated with weaning off of prednisone. I was only on pred for 6

months. I was about two months into a flare and my rheum at the time

was saying I had to go on MTX. I flat out refused so he put me on

10mg daily of pred until I could decide what to do. That was on

12/30/05. Hoping to start the AP, I switched rheumys and started

going to Dr. Trentham in Boston. He said he wanted me to get off the

prednisone and start on minocin. I started minocin 200mg daily on

2/24/06. On 3/1, I dropped my pred dose to 5mg daily. No problems.

On 4/16 I dropped pred to 2.5mg daily. Sometime in May, I started

having ankle swelling and pain in my lower legs mostly at night but

lately it seems like it's all day. I went to my PCP in early June

and he said he thought it might be the pred but didn't really tell me

to stop. He said I should wear support stockings. I tried, they

don't help. On 6/16 I went to Dr T and he said stop the pred which I

did that day. Now I'm only on Minocin 200mg daily. I'm still having

the ankle swelling and leg pain as well as being tired all the time.

Occasionally I take Aleve (wow does that work great) just so I can

cook dinner and clean up after or if my kids (dd8, ds6) have swimming

lessons or a baseball game.

Sorry this is so long. I wanted to see if anyone else that weaned

off of pred has experienced any of these symptoms (or any others I

didn't mention).

TIA for any input.

Theresa

RA 6 yrs, AP 4 months

To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

Hi, Am weaning off pred slowly, from 10 mg in April, now at 5 1/2 per day. I

reduce by 1/2 mg about each week. No side effects like you mention, only an

increase in pain and fatigue with each reduction that gets be

>From: " merriams_rcn_com " <merriams@...>

>Reply-rheumatic

>rheumatic

>Subject: rheumatic Weaning off Prednisone

>Date: Wed, 12 Jul 2006 15:14:33 -0000

>

>Hi everyone,

>

>I was wondering if anyone can tell me if there are any symptoms

>associated with weaning off of prednisone. I was only on pred for 6

>months. I was about two months into a flare and my rheum at the time

>was saying I had to go on MTX. I flat out refused so he put me on

>10mg daily of pred until I could decide what to do. That was on

>12/30/05. Hoping to start the AP, I switched rheumys and started

>going to Dr. Trentham in Boston. He said he wanted me to get off the

>prednisone and start on minocin. I started minocin 200mg daily on

>2/24/06. On 3/1, I dropped my pred dose to 5mg daily. No problems.

>On 4/16 I dropped pred to 2.5mg daily. Sometime in May, I started

>having ankle swelling and pain in my lower legs mostly at night but

>lately it seems like it's all day. I went to my PCP in early June

>and he said he thought it might be the pred but didn't really tell me

>to stop. He said I should wear support stockings. I tried, they

>don't help. On 6/16 I went to Dr T and he said stop the pred which I

>did that day. Now I'm only on Minocin 200mg daily. I'm still having

>the ankle swelling and leg pain as well as being tired all the time.

>Occasionally I take Aleve (wow does that work great) just so I can

>cook dinner and clean up after or if my kids (dd8, ds6) have swimming

>lessons or a baseball game.

>

>Sorry this is so long. I wanted to see if anyone else that weaned

>off of pred has experienced any of these symptoms (or any others I

>didn't mention).

>

>TIA for any input.

>Theresa

>RA 6 yrs, AP 4 months

>

>

>

>

[Guest guest]

Hi Theresa! Geoff here.

You wrote:

" I was wondering if anyone can tell me if there are any symptoms associated with

weaning off of prednisone. ... Sometime in May, I started having ankle

swelling and pain in my lower legs mostly at night but lately it seems like it's

all day. ... On 6/16 I went to Dr T and he said stop the pred which I did that

day. Now I'm only on Minocin 200mg daily. I'm still having the ankle swelling

and leg pain as well as being tired all the time. "

Consider supplementing Hcl. The natural form in your stomach is betaine

hydrochloride, not hydrochloric acid per se. Take according to label and see if

that helps.

For many, or some might say all, of us, this disease is closely related to gut

competency. Low betaine is common and often noted as " acid indigestion " . The

problem with this moniker is that it leads people to believe they have __too

much__ stomach acid and therefor purchase large amounts of antacids to seek

relief, which also often includes those with acid reflux, when in fact the

problem is __not enough__ acid to properly digest the foods they eat. Stomach

acid declines with age, as do incidents of reflux and indigestion.

Most labels will recommend 1-2 tablets daily with meals. I had a doc recommend

6 tablets with a heavily proteined meal (which includes milk, bean and nut

proteins) but found at that level I had a very slight " cold pain " near the

cardial notch at the end of the esophagus / top of the stomach.

The really nice things with betaine are: (1) it's a natural item our bodies are

designed to work with; and (2) when the stomach gets used to a higher amount of

betaine, the body takes over and increases production to a more appropriate

level at which time you can stop taking it. As my doc put it, " Play with it.

Try label dose, try up, down none, etc. The more protein in the meal, the

harder it is to digest. "

My personal experience was that days after starting betaine foot and ankle

swelling that had plagued me for several years went away.

HTH,

Geoff

Acts 2:39

[Guest guest]

Hi Cathleen, I also go to Dr. Trentham. He is the best in this area. Do what he

says. The swelling may take a while to go down. It is a sign that the minocin

is working. There is a battle going on inside of you and may feel worse before

you feel better. The Minocin is attacking the mycoplasmas and as they die off

they leave behind a toxin. The swelling is the toxin. In time it will all be

gone. Have patience. I am in my 7 month of Minocin 100mg twice a day. My

recovery is going fast as I never started on the prednisone. From my 40 years

in the nursing field, I knew better. My cousin died from Lupus. The faster you

get off the prednisone, the easier it will be for the Minocin to work. The

longer you've been on the prednisone, the longer it takes the Minocin to take

effect. Don't get discouraged. I was on tons of pain meds last two years.

This year, I take an ocassional 1/2 hydrocordone when I really can't get to

sleep because of achiness. Last year I couldn't

roll over in bed w/o excruciating pain. And my fingers were bent over into a

" C " configuration so when the fingertips touched they made a circle. Now they

are totally straight. Still a bit puffy and sometimes achy, but nothing like

last year. I have both R/A & Scleroderma. The difference is last year I was

dying from it and now I am living with it and my quality of life has greatly

improved. So hang in there and e-mail me anytime. We have a side group going

and you are welcome to join us. The one who started it is Lynne G. So, if you

see a post from her. Answer or ask her. She has an encyclopedia of information

in her head. My e-mail is martysfolks2004@.... You're on the right path!

Dolores Rosner

Cathleen etto <beachcat_6@...> wrote: Hi, Am weaning off pred slowly,

from 10 mg in April, now at 5 1/2 per day. I

reduce by 1/2 mg about each week. No side effects like you mention, only an

increase in pain and fatigue with each reduction that gets be

>From: " merriams_rcn_com "

>Reply-rheumatic

>rheumatic

>Subject: rheumatic Weaning off Prednisone

>Date: Wed, 12 Jul 2006 15:14:33 -0000

>

>Hi everyone,

>

>I was wondering if anyone can tell me if there are any symptoms

>associated with weaning off of prednisone. I was only on pred for 6

>months. I was about two months into a flare and my rheum at the time

>was saying I had to go on MTX. I flat out refused so he put me on

>10mg daily of pred until I could decide what to do. That was on

>12/30/05. Hoping to start the AP, I switched rheumys and started

>going to Dr. Trentham in Boston. He said he wanted me to get off the

>prednisone and start on minocin. I started minocin 200mg daily on

>2/24/06. On 3/1, I dropped my pred dose to 5mg daily. No problems.

>On 4/16 I dropped pred to 2.5mg daily. Sometime in May, I started

>having ankle swelling and pain in my lower legs mostly at night but

>lately it seems like it's all day. I went to my PCP in early June

>and he said he thought it might be the pred but didn't really tell me

>to stop. He said I should wear support stockings. I tried, they

>don't help. On 6/16 I went to Dr T and he said stop the pred which I

>did that day. Now I'm only on Minocin 200mg daily. I'm still having

>the ankle swelling and leg pain as well as being tired all the time.

>Occasionally I take Aleve (wow does that work great) just so I can

>cook dinner and clean up after or if my kids (dd8, ds6) have swimming

>lessons or a baseball game.

>

>Sorry this is so long. I wanted to see if anyone else that weaned

>off of pred has experienced any of these symptoms (or any others I

>didn't mention).

>

>TIA for any input.

>Theresa

>RA 6 yrs, AP 4 months

>

>

>

>

To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

Hi Cathleen, This is Dolores again. I just read another post someone sent you

re: those books. I was gonna tell you about them too. I have them and they are

a live saver. You can get them thru amazon.com and if you want a reduced

price, you can buy them used or new. The first one is " The New Arthritis

Breakthrough " by Henry Scammell, " The Roadback " by McPherson Brown, M.D.

and Henry Scammell, and " Scleroderma, the proven therapy that can save your

life " by Henry Sammell. Get it even it you don't have scleroderma. These three

books will open up your eyes. Great advise you got from that other post too.

Dolores

Cathleen etto <beachcat_6@...> wrote: Hi, Am weaning off pred slowly,

from 10 mg in April, now at 5 1/2 per day. I

reduce by 1/2 mg about each week. No side effects like you mention, only an

increase in pain and fatigue with each reduction that gets be

>From: " merriams_rcn_com "

>Reply-rheumatic

>rheumatic

>Subject: rheumatic Weaning off Prednisone

>Date: Wed, 12 Jul 2006 15:14:33 -0000

>

>Hi everyone,

>

>I was wondering if anyone can tell me if there are any symptoms

>associated with weaning off of prednisone. I was only on pred for 6

>months. I was about two months into a flare and my rheum at the time

>was saying I had to go on MTX. I flat out refused so he put me on

>10mg daily of pred until I could decide what to do. That was on

>12/30/05. Hoping to start the AP, I switched rheumys and started

>going to Dr. Trentham in Boston. He said he wanted me to get off the

>prednisone and start on minocin. I started minocin 200mg daily on

>2/24/06. On 3/1, I dropped my pred dose to 5mg daily. No problems.

>On 4/16 I dropped pred to 2.5mg daily. Sometime in May, I started

>having ankle swelling and pain in my lower legs mostly at night but

>lately it seems like it's all day. I went to my PCP in early June

>and he said he thought it might be the pred but didn't really tell me

>to stop. He said I should wear support stockings. I tried, they

>don't help. On 6/16 I went to Dr T and he said stop the pred which I

>did that day. Now I'm only on Minocin 200mg daily. I'm still having

>the ankle swelling and leg pain as well as being tired all the time.

>Occasionally I take Aleve (wow does that work great) just so I can

>cook dinner and clean up after or if my kids (dd8, ds6) have swimming

>lessons or a baseball game.

>

>Sorry this is so long. I wanted to see if anyone else that weaned

>off of pred has experienced any of these symptoms (or any others I

>didn't mention).

>

>TIA for any input.

>Theresa

>RA 6 yrs, AP 4 months

>

>

>

>

To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

Yes I know of two people but neither of them were " weaning " when it happened

I have been on prednisone 18 years and since about year 12 have from

time to time been " terrified " that this could one day happen but so far

so good.

Mel

NZ

(a seldom poster)

refrivera wrote:

> I have been on prednisone for 2 years now. I have been weaning off at

> 1mg every 4 weeks. So far okay but all of a sudden I seem to have a

> tear in the tendon of my achilles heal. The podiatrist says it is the

> prednisone. Now I am on crutches with the possibility of surgery. Has

> anyone had the same experience?

>

>

[Guest guest]

Dolores,

Thank you for your reply. It's very encouraging to hear other

people's stories and know that things will get better for me too.

Good health.

Theresa

Hi everyone,

>

> I was wondering if anyone can tell me if there are any symptoms

> associated with weaning off of prednisone. I was only on pred for 6

> months. I was about two months into a flare and my rheum at the time

> was saying I had to go on MTX. I flat out refused so he put me on

> 10mg daily of pred until I could decide what to do. That was on

> 12/30/05. Hoping to start the AP, I switched rheumys and started

> going to Dr. Trentham in Boston. He said he wanted me to get off the

> prednisone and start on minocin. I started minocin 200mg daily on

> 2/24/06. On 3/1, I dropped my pred dose to 5mg daily. No problems.

> On 4/16 I dropped pred to 2.5mg daily. Sometime in May, I started

> having ankle swelling and pain in my lower legs mostly at night but

> lately it seems like it's all day. I went to my PCP in early June

> and he said he thought it might be the pred but didn't really tell me

> to stop. He said I should wear support stockings. I tried, they

> don't help. On 6/16 I went to Dr T and he said stop the pred which I

> did that day. Now I'm only on Minocin 200mg daily. I'm still having

> the ankle swelling and leg pain as well as being tired all the time.

> Occasionally I take Aleve (wow does that work great) just so I can

> cook dinner and clean up after or if my kids (dd8, ds6) have swimming

> lessons or a baseball game.

>

> Sorry this is so long. I wanted to see if anyone else that weaned

> off of pred has experienced any of these symptoms (or any others I

> didn't mention).

>

> TIA for any input.

> Theresa

> RA 6 yrs, AP 4 months

>

>

>

>

>

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>