Re: prednisone withdrawal

[Guest guest]

Please tell me, what are the symptoms of withdrawal. What happens?

AIH-NJ

[Guest guest]

Hi ,

I think withdrawal symptoms vary in degree and type with different people,

but here are mine. Fatigue, joint pain, headache, nausea, irritability,

muscle aches, throat ache and fever. I go down to 10 mgs. in steps of 5 mg.

From 10 to 7 mg. I take it down 1 mg. at a time. When I get to 7 mgs. I have

to reduce by 1/2 mg. When I get to 5 mg. I take it a day at a time and try

to reduce by 1/2 mg. once a month. It is better if I go at 1/4 mg. at a

time. If I follow this regimen, I have less withdrawal problems.

[Guest guest]

, I am on a prednisone taper. I had a liver tx on 3~11~97 and was on

very high levels right after transplant, 100mgs per day for a while, then

down as low recently as 5 mgs. In April '99 they decided to wean me off

because of weight gain,ect. So I am on 2 mgs per day now after dropping off

1 mg per month. I should be off the prednisone by Sept. 29th If i have no

elevation in liver enzymes or do not experience ny signs of rejection. The

withdrawl symptoms for me were: tiredness, I would not really say fatigue.

Joint and muscle aches. Those are the worst for me. I have been on prenisone

for about 3 years, so it will be nice to finally be rid of it. Hope this

helps

Lori C. MN

Re: [ ] Prednisone withdrawal

>From: S9457@...

>

>Please tell me, what are the symptoms of withdrawal. What happens?

>

> AIH-NJ

>

>---------------------------

[Guest guest]

Hi Lori,

Thanks for the info, I'm currently down to 7.5 mgs of Pred, I can't wait to

get off mostly because of weight gain and being so tired all the time.

It's a great feeling to communicate with people who REALLY know how I feel.

Thanks again!

AIH-NJ

[Guest guest]

,

I guess every dr is different and every case of AIH is different. I wonder if

going off it very slowly is better, realistically it seems like the best way

..

I just hope and pray in time that my liver gets the message and I can be Pred

and Imuran free.

Thanks

[Guest guest]

Dear :

The symptoms for prednisone withdrawal that I've experienced have been lots

of joint pain, fatigue, depression and debilitating pain on the left side

just below the rib cage. I haven't been able to get below 7.5 mg because of

it.

Kathy (AIH)

Seattle area

[Guest guest]

Hi ,

Actually, my doctor did try to take me down quicker. It just didn't work for

me. I have only been off pred. once and that was in 1994. I have taken it

since 1985. Like you said, everybody is different. I always think it best

to do what works for each individual. Good luck!

[Guest guest]

Hi again, Kay.

I don't know if they can determine whether remission is induced by

medications or was spontaneous remission. I suspect that they think that

the drugs have brought on the remission and that's the reason I'm supposed

to stay on both pred and Imuran for " life " . I do know that despite

immunosuppressive drugs, I still have a fairly aggressive immune system.

That should be a good thing, but for us, I don't think it is. I think most

of us have read the statistics that say that 80% of AIH patients who stop

meds will have a relapse within 6 months. However, most of my labs are so

beautifully normal these days. Others whose meds are decreased have ups

and downs that I've never had. I'd say that 99% of my medical problems

right now are due to the medications I take. I know one thing for sure.

If I have increased problems with side effects, especially related to bone

loss, I'm going to demand that they take a serious second look at the price

I might be paying for this lovely remission.

Yes, cortisol insufficiency is the same thing as adrenal insufficiency.

The Cortisol Insufficiency test is how they measured my adrenal function.

Did you have the test where they first gave you an injection then drew

blood several times over a few hours? One doctor said that it could take

as long as a year for my body's natural adrenal function to " wake up " .

And, there is the possibility that it won't ever happen, though I don't

think that's common. But, the doctor (transplant specialist in California)

who said that I must take the drugs for life isn't even aware of the fact

that I've had adrenal insufficiency problems. He just told me to

immediately stop the Prednisone reduction at 5 mgs., and not look forward

to ever taking less. My new Internist has told me the same thing. He said

that they can't even consider reducing it down to 2.5 mgs. Maybe they can

measure your autoimmune reactions in some manner we're not aware of, and

that's the reason they are so determined to continue to suppress it with

Prednisone? Anyhow, adrenal insufficiency, for me, is just another

unpleasant side effects of two years of treatment for AIH.

In one of my jumbled files, I have information on the criteria usually used

for deciding when a transplant is indicated. Most of them are life and

death issues, but surprisingly, a couple of them were quality of life

issues. Medical science can keep us alive like growing a plant in a glass

of water. It's life, but what kind of life is it? I hope that at least

part of the purpose for a transplant is to give people a chance to have a

normal life vs. being a sick body just making it from day to day, but

managing to survive.

I'd heard that AIH can return after transplant. It makes sense, since it's

not the liver that's diseased, it's the body's mechanism that's flawed.

However, the difference is that they know what might be lurking there with

a transplant patient and most of us were sick a long time before we were

diagnosed, so our livers had the opportunity to go through considerable

undetected deterioration. The will to live is a powerful force and I'd

take a transplant in a heartbeat over dying younger than necessary. Every

little year counts, darn it.

Take care,

Geri

[Guest guest]

Dear Barbara R.:

It really depends on the doctor as to whether or not it is recommended that

you do 'alternate day' dosing with your prednisone. Personally, it did not

work for me. When I tried the alternate day dosing, I had a terrible time

with mood swings and joint pain. Some people respond very well to it, but

others (like me) can't do it. Ask your doctor. Maybe it would be right for

you.

Kathy (AIH)

Seattle area

[Guest guest]

>One doctor said that it could take as long as a year for my body's natural

adrenal function to " wake up " .

><Snip, Snip>

I was glad to read Geri's comment that it can take up to a year to

regain full adrenal function. Maybe there is some hope for my joints!

She mentioned trying to reduce the prednisone again. I am curious about

alternate day therapy where you take 7.5 mg one day and 2.5 mg the next

instead of 5 mg each day. I see this recommended for people taking

prednisone for a long time, but few, if any, of us are taking prednisone

this way. I wonder why our doctor's don't have us doing this.

[Guest guest]

Barbarta,

If you're showing any improvement, you can probably be optimistic that your

body is adapting to Prednisone withdrawal. Until recently, I believed that

my problems all stemmed from failure of my adrenal system to get back on

track. Now I don't know what to think, so it's wait and wonder, as usual.

I tried just splitting my Prednisone up, half in the morning and half at

night. Doing it that way, I felt lousy day and night. When I went back to

taking my full dose in the morning, at least I could plan on feeling half

good half the time. The more you take, the better you feel, but it's a

false well-being because Prednisone is just masking pain, not getting rid

of the source. I would be nervous about taking alternate days because of

the fact that the effects can be felt the day you take it.

Take care,

Geri

[Guest guest]

Geri:

I think you are right. I was with my sister from San Diego this past weekend

for four days and my niece and her mother went shopping with us on Saturday.

I never laughed so hard in a long time and I know I forgot for awhile that I

had AIH and I know it felt good.

Sue AIH

Wisconsin

[Guest guest]

Sue,

You must have been enjoying yourself! Do you notice sometimes that when

you're distracted, you don't notice the aches and pains as much? Sometimes

I do an experiment and I concentrate on an area where I know there's a

medical problem and often, I'll begin to feel discomfort there that I

hadn't noticed before I started focusing on it. It's not that it's

psychosomatic pain, so much as I think that other brain chemicals come into

play when we're enjoying ourselves and they can even override pain relay to

our brains. Just one of my dumb theories, but I wonder if anyone else has

ever noticed this?

Take care,

Geri

<< At 23:37 11/18/1999 -0500, you wrote:

>From: Roselle50@...

>

>FYI

>

>When I was taken off the prednisone last year, I took the last one the first

>day I was in Las Vegas and didn't get sick until a month later. Was in Las

>Vegas for a week.

>

>Sue AIH

>Wisconsin

>

[Guest guest]

Sue,

Maybe one of the things this group does for each other is take our minds

off our own problems for at least a little while because some of the

members have problems that seem so much worse. So, we're more than

friends. We're actually therapeutic for each other!

Take care,

Geri

[Guest guest]

Ann,

I was on 30mg for over a year but my rheumy took me off of it so slowly I

didn't have any problems. I have been on MTX alone for more than 3 years now

and am beginning to have pain and stiffness increasing everywhere in my bod.

Something I would really like to learn is how to get rid of the fatigue.

Since I also have fibromyalgia I seem to be getting a double whammy. What I

wouldn't give for some " get up and go " ! I hope someone has a better answer for

you as to what to do now. I would call my rheumy to find out if he couln't

hellp you through this painful period. God Bless!

Janet in Ca

[Guest guest]

Hi,

I suggest that you check with your physician about having a bone density

test to see if prednisone has affected your bones

or your parathyroid glands, which are located in your neck, just

below your thyroid glands. Take care and strive to be happy.

Sincerely,

Reid

[Guest guest]

I believe the procedure is to wean one off the drug, taking smaller doses,

varying days etc. Doctors I know usually follow that routine. I don't know

however what dose this would be used with.

Fr.

[ ] prednisone withdrawal

Does anyone know anything about prednisone withdrawal and how long it lasts?

I was on 10 mg of Prednisone daily for three years. Came off in February of

this year and feel terrible (and stupid for letting it happen to me, not

questioning it).

Is there any way to expedite the process - stiffness and pain, really

slowing me down - far worse than my PsA. Plus more exhaustion and

depression.

Anyone know anything about this?

[Guest guest]

you definitely should not stop cold turkey

my rheumy's regimen for going off before I had my

knee replaced last July " 05 " was 9mg for 5 days 8mg

for5 down to 0 about 2 months of tapering- I had been

on 5 or 10 daily for ten years

after the surgery for some reason I have not had to go

back onto the MTX or the pred just 150 mg voltarin

daily, glucosamine, fish oils

I say a prayer every night

--- <asorthodox@...> wrote:

> I believe the procedure is to wean one off the drug,

> taking smaller doses,

> varying days etc. Doctors I know usually follow that

> routine. I don't know

> however what dose this would be used with.

>

> Fr.

>

>

>

> [ ] prednisone withdrawal

>

>

>

> Does anyone know anything about prednisone

> withdrawal and how long it lasts?

>

>

> I was on 10 mg of Prednisone daily for three years.

> Came off in February of

> this year and feel terrible (and stupid for letting

> it happen to me, not

> questioning it).

>

> Is there any way to expedite the process -

> stiffness and pain, really

> slowing me down - far worse than my PsA. Plus more

> exhaustion and

> depression.

>

> Anyone know anything about this?

>

>

>

>

>