Re: Prendisone, Weight changes and Typing

[Guest guest]

> , I have been told that I must/should get off Prednisone that I've

> been taking for more than 16 years. Dosage has been at or below 15 mg/day

> from the beginning, so it's a low dose. So far, it hasn't given me any

> problems except for a couple of muscles being attacked, causing cramps and

> pain. I just quit taking it for a

>

Dennis,

I have been taking prednisone for 8 years (up to 20 mg) with zilch side

effects.

I get a Dexa scan for loss of bone every other year (most important side

effect to my doctor) , and I come out with flying colors every time. I taske

prescription potassium for muscle cramps (a must)!

I think there are some of us who apparently are not adversely affected by

preddy. It gives me a good appetite, lots of energy, and a happier outlook on

life.

Of course, I am not naive, some day I may have side affects.

But my doctor agrees there is a tradeoff. I would rather have a quality life

with prednisone than be miserable every single day without it.

In my book on prednisone the dosages are categorized as low up to 15 mg per

day (Coping With Prednisone, Zukerman).

It is depressing when people are so negative when some of us must take this

medication.

For me, it is a lifesaver.

We need support, not horror stories????

Pris

[Guest guest]

, I have been told that I must/should get off Prednisone that I've

been taking for more than 16 years. Dosage has been at or below 15 mg/day

from the beginning, so it's a low dose. So far, it hasn't given me any

problems except for a couple of muscles being attacked, causing cramps and

pain. I just quit taking it for a couple of days and I was back to normal.

I've tried to quit and caused more terrible pain and other discomfort than

the side effects could, and it took a long time to get back to my 'normal'.

I'm 62 now, and want quality of life, not quantity, so I'll keep taking it

as long as it helps, and won't listen to the negative hype, only facts as

they pertain to me.

Don't worry what others think about your using scooters and handicap

parking. That's why they are there. Don't worry about " high " doses of

Prednisone unless it starts causing problems for you. That's what I do, and

it works for me.

Dennis

[ ] Prendisone, Weight changes and Typing

>

> Hello,

>

> I have been reading posts for quite some time have learned a lot from

> all of you already. I was diagnosed about a year ago with RA (age 44)

> although I do not have a positive RA factor. I have been on

> prednisone since July of 2005 and REALLY want to get off of it

> because I am concerned about damage I have heard it does. Most of

> what I read talks about " high dose steroids " being the really bad

> thing. How much is considered " high dose " ? I also take methatrexate

> 20 mg a week, but have no problems with that.

> I have been trying to wean myself off the steroids. My rheumatologist

> says I can drop the dose 2.5 mg every 3 weeks. I feel like it will

> take forever. Just before starting it I lost 95 pounds (much needed)

> but have gained all of it back and just feel horrible. I doc says

> some of it is the appetite increase and water retention from the

> prendisone, but I know a lot of it is the pain I feel when I

> exercise. My doctor syas I will have a lot less pain in my knee (one

> is replaced already and the other needs it) if I lost weight. I just

> feel horrible using those scotters and handicapped parking pass when

> I thinbk people see me and think if I only took better care of myself

> I'd be so much healthier. Sorry, got to rambling on.

> My last question is has anyone found a keyboard that works well for

> you when your hands are painful? I work from home for 85% of my job

> and am on the computer most of the time. My hands are so painful. My

> doc says up the prednisone. I was looking for a better option. :-)

>

>

[Guest guest]

Welcome, !

So wait a minute ... did the same doctor who has had you on prednisone for

nearly a year say that your knee would feel better if you lost weight? If

so, he's going to get a kick in the butt from me.

The phrase " high dose prednisone (or steroids or corticosteroids or

glucocorticoids) " is bandied about quite often, but it means different

dosages to different doctors and researchers.

For the average person, the physiologic dose is probably between 5 mg and

7.5 mg per day, so anything above that could be considered fairly high. How

much are you taking?

There are risks associated with even low-dose chronic prednisone use. Also,

prednisone has not been shown to be disease-modifying over the long haul for

RA, so I believe you are wise to discontinue it.

Maybe it's time for a second opinion? If insurance/funds will allow, a good

endocrinologist can assist you in weaning off the prednisone.

Sorry about the added burden of worrying about what others are thinking. I

wish I could convince you to free yourself from those thoughts.

Not an MD

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Prendisone, Weight changes and Typing

>

> Hello,

>

> I have been reading posts for quite some time have learned a lot from

> all of you already. I was diagnosed about a year ago with RA (age 44)

> although I do not have a positive RA factor. I have been on

> prednisone since July of 2005 and REALLY want to get off of it

> because I am concerned about damage I have heard it does. Most of

> what I read talks about " high dose steroids " being the really bad

> thing. How much is considered " high dose " ? I also take methatrexate

> 20 mg a week, but have no problems with that.

> I have been trying to wean myself off the steroids. My rheumatologist

> says I can drop the dose 2.5 mg every 3 weeks. I feel like it will

> take forever. Just before starting it I lost 95 pounds (much needed)

> but have gained all of it back and just feel horrible. I doc says

> some of it is the appetite increase and water retention from the

> prendisone, but I know a lot of it is the pain I feel when I

> exercise. My doctor syas I will have a lot less pain in my knee (one

> is replaced already and the other needs it) if I lost weight. I just

> feel horrible using those scotters and handicapped parking pass when

> I thinbk people see me and think if I only took better care of myself

> I'd be so much healthier. Sorry, got to rambling on.

> My last question is has anyone found a keyboard that works well for

> you when your hands are painful? I work from home for 85% of my job

> and am on the computer most of the time. My hands are so painful. My

> doc says up the prednisone. I was looking for a better option. :-)

>

>

[Guest guest]

Hi :

Sometimes adding another medication to Methotrexate

can help with the symptoms. Has your doctor ever

mentioned anything like that? I have mixed Mtx with a

few meds, and Enbrel has been the one to work best

with it. It might be something to talk with your

doctor about, maybe you need more than just the Mtx,

and that will help you be able to stop the Prednisone.

I understand about the weight loss issue. I lost 80

pounds prior to my RA dx, and have put it all back on

over the years because of not being able to be active

and exercise like I want to. I used to ride my horse

daily, and now if I can do it once a week, I am lucky.

Don't feel badly about using the scooters, canes,

walkers, wheelchair, whatever helps you to get around.

I know how you mean, that people look at you like

well, if you would just loose weight, you would not

need that scooter, I have had those looks too when I

use my cane or handicapped placard. But, it is what

it is, and in the end it us ourselves who have to do

what is best for us. And if best is to use some sort

of help to get around, then we need to do it. Why

limit yourself from being able to do things when the

scooter would be of so much help you you. Just

getting out can improve your outlook so much. I try

not to use the handicapped spot if I can help it, but

some days I really do need it, because the journey

inside of the store to get the things I need will be

causing me significant discomfort, and I don't need to

walk to the end of the lot in addition. I'm just

trying to spare my body more pain, and that is not

something to be ashamed about.

Well, you have no doubt read enough posts to know that

we understand, and are there for you, so come back and

visit with us anytime! Take care - best of luck -

Kathe in CA

Kathe

" To ride a horse is to borrow freedom. "

__________________________________________________

[Guest guest]

Hi ,

I can tell you that you need to watch the predisone. I just had cataract

surgery and I am having another surgery. They have told me, it is coming

from the predisone that I have taken for 9 years. I am currently trying to

get off of the drug. I am down to 1/2 a day and now it is really hard. My

dexa scan was not good at all. I had lost 2 inches in height, again they

are stating the predisone.

It is a drug we love to hate. If you need it and it helps go with it but be

aware of the dangers. I wasn't when I started to take the drug. It did

help, now my pain is much worse. Under the advise of the doctor and my own,

I am almost off of it. I do not know what will take it's place, as my pain

is terrible. But for Me, I feel I am better off without it.

As far as the keyboard I don't know. I do know there is mouse that uses a

ball. I had one and it worked well. You just use the palm of your hand, to

move it around.

Good Luck

Lynn (MeMom)

[ ] Prendisone, Weight changes and Typing

>

>

>>

>> Hello,

>>

>> I have been reading posts for quite some time have learned a lot from

>> all of you already. I was diagnosed about a year ago with RA (age 44)

>> although I do not have a positive RA factor. I have been on

>> prednisone since July of 2005 and REALLY want to get off of it

>> because I am concerned about damage I have heard it does. Most of

>> what I read talks about " high dose steroids " being the really bad

>> thing. How much is considered " high dose " ? I also take methatrexate

>> 20 mg a week, but have no problems with that.

>> I have been trying to wean myself off the steroids. My rheumatologist

>> says I can drop the dose 2.5 mg every 3 weeks. I feel like it will

>> take forever. Just before starting it I lost 95 pounds (much needed)

>> but have gained all of it back and just feel horrible. I doc says

>> some of it is the appetite increase and water retention from the

>> prendisone, but I know a lot of it is the pain I feel when I

>> exercise. My doctor syas I will have a lot less pain in my knee (one

>> is replaced already and the other needs it) if I lost weight. I just

>> feel horrible using those scotters and handicapped parking pass when

>> I thinbk people see me and think if I only took better care of myself

>> I'd be so much healthier. Sorry, got to rambling on.

>> My last question is has anyone found a keyboard that works well for

>> you when your hands are painful? I work from home for 85% of my job

>> and am on the computer most of the time. My hands are so painful. My

>> doc says up the prednisone. I was looking for a better option. :-)

>>

>>

>

>

>

>

>

[Guest guest]

HI ,

I am just getting down to 20 mg of prednisone a day (from a high of

40mg for 4 months) , so I have along way to go to get off. I also

take Methatrexate 20 mg a week, folic acid, singulair,neurontin,

wellbutrin, trazadone to sleep and they are checking my insurance to

add Humira now.

All of the research articles you have posted have really helped me

learn more about this. I am learning to hold my head up a little and

not feel so apologetic about having pain and more importantly saying

I can't do things because of it.

I work full-time and have a seriously chronically ill 15 year old who

we travel 8 hrs. one way to get treatment for. I am in a doctorial

program in Educational Leadership and Policy Analysis and yet with

all those areas where I feel confident and strong ... I can be

reduced to tears when I can't walk around a grocery store and get

what I need. Nuts I know ... and I am learning. :-)

I haven't had side effects other than mood swings and depression from

the prednisone. Up until now anytime I have complained of pain my

rheumy wants to up the prednisone. I am hoping the Humari does

something. I don't know much about it except what I have read here. I

understand that what might work wonders for one person is poison to

anothers system. My daughter's disease is in remission after a drug

trial where all other kiddos came out of remission within 4 weeks of

the drug trial ending (long term use was not an option). Theresa has

had a year and 3/4 remission! We are all individuals.

The supposrt and positivness of this group has really made me start

to feel like this is something I can manage.

Thank you

in St. Louis

In , " " <Matsumura_Clan@...>

wrote:

>

> Welcome, !

>

> So wait a minute ... did the same doctor who has had you on

prednisone for

> nearly a year say that your knee would feel better if you lost

weight? If

> so, he's going to get a kick in the butt from me.

>

> The phrase " high dose prednisone (or steroids or corticosteroids or

> glucocorticoids) " is bandied about quite often, but it means

different

> dosages to different doctors and researchers.

>

> For the average person, the physiologic dose is probably between 5

mg and

> 7.5 mg per day, so anything above that could be considered fairly

high. How

> much are you taking?

>

> There are risks associated with even low-dose chronic prednisone

use. Also,

> prednisone has not been shown to be disease-modifying over the long

haul for

> RA, so I believe you are wise to discontinue it.

>

> Maybe it's time for a second opinion? If insurance/funds will

allow, a good

> endocrinologist can assist you in weaning off the prednisone.

>

> Sorry about the added burden of worrying about what others are

thinking. I

> wish I could convince you to free yourself from those thoughts.

>

>

>

> Not an MD

>

> I'll tell you where to go!

>

> Mayo Clinic in Rochester

> http://www.mayoclinic.org/rochester

>

> s Hopkins Medicine

> http://www.hopkinsmedicine.org

>

>

> [ ] Prendisone, Weight changes and Typing

>

>

> >

> > Hello,

> >

> > I have been reading posts for quite some time have learned a lot

from

> > all of you already. I was diagnosed about a year ago with RA (age

44)

> > although I do not have a positive RA factor. I have been on

> > prednisone since July of 2005 and REALLY want to get off of it

> > because I am concerned about damage I have heard it does. Most of

> > what I read talks about " high dose steroids " being the really bad

> > thing. How much is considered " high dose " ? I also take

methatrexate

> > 20 mg a week, but have no problems with that.

> > I have been trying to wean myself off the steroids. My

rheumatologist

> > says I can drop the dose 2.5 mg every 3 weeks. I feel like it will

> > take forever. Just before starting it I lost 95 pounds (much

needed)

> > but have gained all of it back and just feel horrible. I doc says

> > some of it is the appetite increase and water retention from the

> > prendisone, but I know a lot of it is the pain I feel when I

> > exercise. My doctor syas I will have a lot less pain in my knee

(one

> > is replaced already and the other needs it) if I lost weight. I

just

> > feel horrible using those scotters and handicapped parking pass

when

> > I thinbk people see me and think if I only took better care of

myself

> > I'd be so much healthier. Sorry, got to rambling on.

> > My last question is has anyone found a keyboard that works well

for

> > you when your hands are painful? I work from home for 85% of my

job

> > and am on the computer most of the time. My hands are so painful.

My

> > doc says up the prednisone. I was looking for a better option. :-)

> >

> >

>

[Guest guest]

In a message dated 5/23/06 6:45:02 PM, ianchicago@... writes:

> got cea from Remicade and an enlarged liver from MTX......All in a

> very short time span after taking them......I'll stick with Pred even

> knowing and living the side effects.........

> It's a quality of life issue isn't it?

>

>

Ian,

THANK YOU for putting things in perspective!

Without prednisone, I would not be here.

Strangely enough, my cheeks are sunken in......wish I WOULD get the round

face!

Hugs,

Pris

[Guest guest]

, Welcome to our group...it is a wonderful place for help and

understanding. I too am on prednisone, Have been for 8 yrs. 5mg to 7.5mg off

and on through out the years. I too take MTX 20 mg per week. I have had no

problems with either one at the present dosages. When I first went on

Prednisone I gained weight, my rheumy referred to it as the prednisone puff. My

cheeks looked like I was storing chesnuts. Do you remember seeing Jerry a

few yrs back. His face was so puffed, he said it was from the prednisone. I

take water pills in addition to the prednisone because of the water retention

and it helps. I am not a good candidate for the other drugs such as Humira and

Enbrel because I get sinus infections periodically. I have one at present, I

will elaborate on that under another posting.

I will be 60 in Sept.and agree with Dennis, prednisone has allowed me quality

of life and I know that I should be weened off of it. But what else can I take,

as I said I am not a good candidate for the other drugs at this time. So I'll

stay on the prednisone and pray that the side affects stay away. So far it has

been a life saver and has worked for me. I am sure you will lose weight when

you lower your prednisone dosage. I can remember being hungry all the time when

I first started and I did gain some weight. As time passed, I noticed that my

huge appetite had deminished and that I lost the gained weight and have

maintained the same weight for years. Cheeks are a little puffy still and that's

okay I can live with it,. As far as the scooters and handicap parking....Use

them girl....That's what there for and remember the people looking at you do not

walk in your shoes and will never understand your pain.....I take advantage of

the store scooters and handicap parking

whenever I am in pain, and I never feel embarrassed by it, because I know

without them I would be house bound. When I feel good I don't use them...I walk

because I love the exercise.... I wish you the best and hope that you feel

better soon....Hugs

betnden@... wrote:

, I have been told that I must/should get off Prednisone that I've

been taking for more than 16 years. Dosage has been at or below 15 mg/day

from the beginning, so it's a low dose. So far, it hasn't given me any

problems except for a couple of muscles being attacked, causing cramps and

pain. I just quit taking it for a couple of days and I was back to normal.

I've tried to quit and caused more terrible pain and other discomfort than

the side effects could, and it took a long time to get back to my 'normal'.

I'm 62 now, and want quality of life, not quantity, so I'll keep taking it

as long as it helps, and won't listen to the negative hype, only facts as

they pertain to me.

Don't worry what others think about your using scooters and handicap

parking. That's why they are there. Don't worry about " high " doses of

Prednisone unless it starts causing problems for you. That's what I do, and

it works for me.

Dennis

[ ] Prendisone, Weight changes and Typing

>

> Hello,

>

> I have been reading posts for quite some time have learned a lot from

> all of you already. I was diagnosed about a year ago with RA (age 44)

> although I do not have a positive RA factor. I have been on

> prednisone since July of 2005 and REALLY want to get off of it

> because I am concerned about damage I have heard it does. Most of

> what I read talks about " high dose steroids " being the really bad

> thing. How much is considered " high dose " ? I also take methatrexate

> 20 mg a week, but have no problems with that.

> I have been trying to wean myself off the steroids. My rheumatologist

> says I can drop the dose 2.5 mg every 3 weeks. I feel like it will

> take forever. Just before starting it I lost 95 pounds (much needed)

> but have gained all of it back and just feel horrible. I doc says

> some of it is the appetite increase and water retention from the

> prendisone, but I know a lot of it is the pain I feel when I

> exercise. My doctor syas I will have a lot less pain in my knee (one

> is replaced already and the other needs it) if I lost weight. I just

> feel horrible using those scotters and handicapped parking pass when

> I thinbk people see me and think if I only took better care of myself

> I'd be so much healthier. Sorry, got to rambling on.

> My last question is has anyone found a keyboard that works well for

> you when your hands are painful? I work from home for 85% of my job

> and am on the computer most of the time. My hands are so painful. My

> doc says up the prednisone. I was looking for a better option. :-)

>

>

[Guest guest]

Pris~

I've been on prednisone for almost 30 years and most of that time have been

on high doses...... 40mgs a day when I'm on it for a flare up and then

weaning myself off of it only to trigger another flare-up -- I've currently

been on 40mgs of prednisone for over two years and waiting for enough money

to come down on my daily dosage and trigger my third " partial obstruction "

leading to my third surgery of my small intestine.

It's been a wild ride and prednisone has been my savior!!

You're absolutely right about prednisone. Everybody reacts differently to

it.......and for some it's the only choice. I know for me it is. There's

nothing else in this world that will calm a flare-up in my case. It doesn't

cure anything but it stops it dead in it's tracks and holds it there until

you can regroup! LOL

It's also a very dangerous drug to take long term but long term differs with

each individual. My doctors are amazed that I don't get that " cookie face "

look from taking it....nurses have mentioned it too. And they have mentioned

their astonishment that I didn't suffer any serious side effects from it ---

But!!! It finally came! I've been diagnosed with RA and Osteoporosis -- and

I've just recently had " steroidal cataracts " removed from my right eye, then

my left. I had lens implant surgery.........I've not had good luck with

Remicade, MTX, Humira, Pentasa, Asacol, 6MP, etc,etc.........I'm still

suffering from just a few months of Humira and don't see amy end in site --

I got cea from Remicade and an enlarged liver from MTX......All in a

very short time span after taking them......I'll stick with Pred even

knowing and living the side effects.........

It's a quality of life issue isn't it?

IAN

Re: [ ] Prendisone, Weight changes and Typing

> , I have been told that I must/should get off Prednisone that I've

> been taking for more than 16 years. Dosage has been at or below 15 mg/day

> from the beginning, so it's a low dose. So far, it hasn't given me any

> problems except for a couple of muscles being attacked, causing cramps and

> pain. I just quit taking it for a

>

Dennis,

I have been taking prednisone for 8 years (up to 20 mg) with zilch side

effects.

I get a Dexa scan for loss of bone every other year (most important side

effect to my doctor) , and I come out with flying colors every time. I taske

prescription potassium for muscle cramps (a must)!

I think there are some of us who apparently are not adversely affected by

preddy. It gives me a good appetite, lots of energy, and a happier outlook

on

life.

Of course, I am not naive, some day I may have side affects.

But my doctor agrees there is a tradeoff. I would rather have a quality life

with prednisone than be miserable every single day without it.

In my book on prednisone the dosages are categorized as low up to 15 mg

per

day (Coping With Prednisone, Zukerman).

It is depressing when people are so negative when some of us must take this

medication.

For me, it is a lifesaver.

We need support, not horror stories????

Pris

[Guest guest]

i think prednisone is the way i am going too. i have info on humira, orencia

and rituxan. or i can up my prednisone 5-10 mgs. i will just have to watch

what i eat and go back to working out again. i stopped when my son moved home

for some stupid reason.

Kathy in IL

[Guest guest]

Kathy~

Prednisone has worked for me over the years but I would certainly tread

lightly. I do believe the risks that are attributed to it but it seems that

not everyone will experience the side effects the same or in the same span

of time.

I'm sworn off biological meds -- I may change my mind at some point but I

see no reason to now.......

IAN

Re: [ ] Prendisone, Weight changes and Typing

>i think prednisone is the way i am going too. i have info on humira,

>orencia

> and rituxan. or i can up my prednisone 5-10 mgs. i will just have to

> watch

> what i eat and go back to working out again. i stopped when my son moved

> home

> for some stupid reason.

>

> Kathy in IL

>

>

>

>