Re: Digest Number 430

[Guest guest]

In a message dated 2/23/2000 12:21:26 AM Pacific Standard Time,

Rpolychondritisonelist writes:

<< I

think that adds Shirley to our list of military retirees and other patients

who were associated with the military. >>

I am retired Air Force. If I wasnt already on your list.

Roy

[Guest guest]

In a message dated 02/23/2000 1:21:35 AM Mountain Standard Time,

Rpolychondritisonelist writes:

<< I LU LU we spoke before on Instant message. Just stopping your meds is not

a

good idea. they have to be tapered off you should have called your doctor

weh

it was all getting to you with the symptoms >>

I agree with Angie! My doc explained that when you take prednisone your

adrenal gland stops producing it -- it is a " lazy " gland. If you don't taper

down to stimulate the gland to begin producing again you end up without the

normal daily level you need to function and serious problems can develop.l

H.

[Guest guest]

In a message dated 02/23/2000 12:55:46 PM Eastern Standard Time,

Hob@... writes:

<< I agree with Angie! My doc explained that when you take prednisone your

adrenal gland stops producing it -- it is a " lazy " gland. If you don't

taper

down to stimulate the gland to begin producing again you end up without the

normal daily level you need to function and serious problems can develop.l

H.

>>

I think this is something all of us old timers with pred know NEVER stop it

abruptly. I also take zantac and another med for my stomach that I can't

remember the name of now and even with the methotrexate so far so good

[Guest guest]

In a message dated 02/23/2000 9:22:41 PM Central Standard Time,

rpawareness@... writes:

<< it is a " lazy " gland. If you don't

taper

down to stimulate the gland to begin producing again you end up without the

normal daily level you need to function and serious problems can develop.l

H. >>

H. That is so true and sometimes though, the gland never regains it no

matter what bacause of the long doses of pred. I hated to say this but I

guess you all needed to know it.

Now on a bighter note I have lost my mind, and I think that is worse

LU

[Guest guest]

Dear everyone, esp Lu and , I think this is what

is happening tome, I have been on and off pred since

1988, a really low dose eg 10 per day helps me a lot

but when i come off it, even really slowly I just

can't function and I start flaring again, and feel so

lethargic I can hardly get out of bed, not to mention

the pain, I am going to discuss this with a

rheumatologist next week (among other things!!) thanks

for the info. Love Liz

--- Lu1953@... wrote:

> In a message dated 02/23/2000 9:22:41 PM Central

> Standard Time,

> rpawareness@... writes:

>

> << it is a " lazy " gland. If you don't

> taper

> down to stimulate the gland to begin producing

> again you end up without the

> normal daily level you need to function and

> serious problems can develop.l

>

> H. >>

> H. That is so true and sometimes though, the

> gland never regains it no

> matter what bacause of the long doses of pred. I

> hated to say this but I

> guess you all needed to know it.

> Now on a bighter note I have lost my mind, and I

> think that is worse

> LU

>

__________________________________________________

[Guest guest]

In a message dated 02/24/2000 3:03:32 AM Central Standard Time,

lizzwizz2000@... writes:

<< I think this is what

is happening tome, I have been on and off pred since

1988, a really low dose eg 10 per day helps me a lot

but when i come off it, even really slowly I just

can't function and I start flaring again, and feel so

lethargic I can hardly get out of bed, not to mention

the pain, I am going to discuss this with a

rheumatologist next week (among other things!!) thanks

for the info. Love Liz

>>

Your welcome Liz, I hope he can give you some answers. I pray you feel better

soon.

Love you

Lu

[Guest guest]

Lu, thanks a lot, and yes, I did write this one! Love

Liz

--- Lu1953@... wrote:

> In a message dated 02/24/2000 3:03:32 AM Central

> Standard Time,

> lizzwizz2000@... writes:

>

> << I think this is what

> is happening tome, I have been on and off pred

> since

> 1988, a really low dose eg 10 per day helps me a

> lot

> but when i come off it, even really slowly I just

> can't function and I start flaring again, and feel

> so

> lethargic I can hardly get out of bed, not to

> mention

> the pain, I am going to discuss this with a

> rheumatologist next week (among other things!!)

> thanks

> for the info. Love Liz

>

> >>

> Your welcome Liz, I hope he can give you some

> answers. I pray you feel better

> soon.

> Love you

> Lu

>

__________________________________________________

[Guest guest]

Dear LULU,

Please NEVER stop taking the Prednisone without talking to your MD first

regardless of how you feel. It can cause a condition called ADRENAL

INSUFFICIENCY..... as stated before your adrenal glands (there are two

located on top of each kidney.... they are very small and " lazy " as stated

before) The adrenal glands are endocrine organs meaning they produce a

substance cortisol.... like a hormone that is

SOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO important to the vital function of the

human body. You need it to live! When artificial " cortisol " is provided the

regulatory part of your body tell the adrenal gland that you have enough and

therefore it stops producing.... so if you stop providing the ARTIFICIAL form

of cortisol you will have none.... the adrenal gland is slow to start

producing the natural cortisol.... it takes it's good old time and

sometimes.... it just doesn't start working again.... rare but it does

happen. An adrenal crisis is not something that anyone wants to go into! It

is life threatening to say the least.... without scaring anyone.... PLEASE

DON'T EVER STOP TAKING YOUR PREDNISONE WITHOUT TAPERING IT

UNDER

THE SUPERVISION OF YOUR

PHYSICIAN!!!!!!!!!!

I can not stress this too much.

I hope I don't sound harsh... I just care about each and everyone of you and

would never forgive myself if I didn't speak up and something happened to one

of you especially those that are " new " to RP and the treatment and meds.... I

know that my medical knowledge has helped me significantly.... It probably

just says on your pill bottle.... " do not discontinue this drug without

consulting your physician first " .

Most people are not instructed as to why but I feel that all of you that are

going to spend your life on and off of Prednisone need to know WHY.

Take care,

SUE

[Guest guest]

Liz,

A low dose of Prednisone may be considered physiologic in your case....

talk with your MD.... I'm very much like you.... I get very sick when my

Prenisone is decreased below 5mg but I notice the difference even under 10mg

I just can't function very well!!!!!!!!!!!!!!!! ..... Physiologic.....

natural body levels is between 5-8mg..... sooooooooo.... talk to your MD

about it

SUE

[Guest guest]

Sue, thanks again, it has occurred to me before but I

have forgotten to mention it, Iam putting it on the

list NOW!!Love Liz

--- SUE7RN@... wrote:

> Liz,

> A low dose of Prednisone may be considered

> physiologic in your case....

> talk with your MD.... I'm very much like you.... I

> get very sick when my

> Prenisone is decreased below 5mg but I notice the

> difference even under 10mg

> I just can't function very well!!!!!!!!!!!!!!!!

> ..... Physiologic.....

> natural body levels is between 5-8mg.....

> sooooooooo.... talk to your MD

> about it

> SUE

>

__________________________________________________

[Guest guest]

Sue, don't ever apologize for being concerned for others in the group. I

don't know if you saw the part of the email I wrote saying that I started off

at 40mg a day for a week, down to 30mg for a week the next week, then down

to 20mg the 3rd week and the last week, I took 10mg a day for 3 days, I just

did not take the last 4 days at 10 mg a day. I had gotten so sick at my

stomach with all of the meds that I just could not make myself take another

pill for about 6 days. Yes, I did start to feel 100% better the last couple

of days and now, I am back on my Lasix (for fluid retention) and Dapsone with

the hope that it will keep me from having a flare up. I am not taking the

Hista-Vent or the Tussi (for coughs and drainage). They are two of the pills

that have nausea as one of the side effects. I do really appreciate your

concern and want you to know that the group means so much to me. Take care

and keep on caring just like you are. Love, Lulu

[Guest guest]

Lulu,

here. Watch your body real close. You went Down and off Pred

real quick and it can be very hard on your body. Make sure you don't

start to flare and if you do go back on Pred dosage quick. Everything I

have read states that going off Pred real quick can cause a rebound of

the disease. I'm not trying to be a downer, goodness knows I hate the

pred and what it can do, but don't want to see you in trouble. I don't

know if you do or not, but I carry pred with me everywhere. We can get

into trouble real quick so don't ever want to be without it nearby.

It's great to see you could get off the pred. I know sometimes even

swallowing another pills almost makes me gag. You are very lucky to be

able to get off so quick. How long had you been on the pred and what

was the highest dosage you've taken?

Saw posts on exercize. I know most of us don't have the energy for alot

of exercize, but I do believe doing a little strength training might

help. Can use 2 lb. weights and just lift arms. Any little bit to try

to help. I know aerobic exercize is out for alot of people due to

respiratory problems, but maybe leg lifts while sitting or arm and

shoulder exercizes with very light weights would help. Don't have to do

alot, just repetitions. Would ask docs first though for those with

brittle bones. Weight training (not right wording here) or using light

weights and repetitions has proved to really help people even in their

90's even more so than aerobic exercize. It can help reduce pain from

arthritis etc. It hurts at first to exercize, but does help with pain

over the long haul. It helps keep the muscle mass that we lose once we

are over 35 and muscle burns more calories than fat.

I am fortunate to be able to resume trying to jog. It is a great stress

release for me and has even helped with my headaches. As I am running,

I can feel the drainage leaving my sinuses. (I continue to just improve

that mental picture you have of me huh LOL).

It's hard finding the time, but does help. God is keeping me strong

right now since I have not been able to jog in over a year since my

diagnosis. My jogging is kinda like most people's fast walking though

so hopefully it's not too hard on my joints. I am looking forward to

getting back into the swimming pool shortly since the weather in Florida

has been nice. Swimming is really the best for our bodies since it

doesn't put a strain on it. I am trying to listen to my body and go by

that. Hope this info on light weight training is helpful since those on

Pred lose muscle mass and that does help. I do know though that when I

was on pred I didn't feel too much like doing that.

Thought I'd just mention these things for people to discuss and provide

their thoughts too.

Hope everyone has a sunny weekend and less pain.

Take Care,

L1006@... wrote:

> at 40mg a day for a week, down to 30mg for a week the next week, then

> down

> to 20mg the 3rd week and the last week, I took 10mg a day for 3 days,

> I just

> did not take the last 4 days at 10 mg a day. I had gotten so sick at

> my

> stomach with all of the meds that I just could not make myself take

> another

> pill for about 6 days. Yes, I did start to feel 100% better the last

> couple

> of days and now, I am back on my Lasix (for fluid retention) and

> Dapsone with

> the hope that it will keep me from having a flare up. I am not taking

> the

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

>

> [ o n h e a l t h ]

Enter: [ o n h e a l t h ]

>

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> hi and welcome. maybe we can come up with answers that our doctors

> can't