prednisone

[Guest guest]

Hi everyone, wrote that she would like to see PA classified as a serious disease. I totally agree. We need to get others educated about PA. The best place I've seen that explains PA without making it seem extremely mild is the booklet from The National Psoriasis Foundation. It even tells about 5 forms of PA. I don't know which one I've been diagnosed with. Why don't you get a copy from them to show others--family, friends, co-workers, heck even some of the doctors we see aren't real familiar with it. They are treating us blindly many times. Prednisone does have bad side effects at high dosages. It made me unable to walk or do anything at all for myself at 60mg. I didn't get better until weaned off. It does usually make you feel like a new person when on it for only a short time at a much smaller dose. I've only had a large dose like that once. Cassie

[Guest guest]

Hi Georgina,

I read your e-mail to Robbie, he laughed at the " sore as a rock " part.

He then said that he hopes Josh gets his wish and can get off Prednisone...

but he plans on taking it forever. He loves to say things that exasperate

me! I will keep pushing him to decrease now, he won't want to be doing

it in January when basketball starts. Thanks, Jana

[Guest guest]

Good Luck, Jana. Kids at this age can be very strong-willed and

persistent. I hope Robbie's willing to give it a try. But then again,

he's at a really low dose. So low that it might not have any negative

side effects. A lot of adults with RA stay on low-dose steroid

maintenance therapy for years. And swear by it. According to our

doctor, growth isn't likely to be affected by such a low dose.

Take care,

Georgina

JANABECKER@... wrote:

>

> Hi Georgina,

>

> I read your e-mail to Robbie, he laughed at the " sore as a rock " part.

> He then said that he hopes Josh gets his wish and can get off Prednisone...

> but he plans on taking it forever. He loves to say things that exasperate

> me! I will keep pushing him to decrease now, he won't want to be doing

> it in January when basketball starts. Thanks, Jana

[Guest guest]

Marcie wrote:

is the same way. She needs to take her meds at about the same

time each day or pays for it. We are also doing a medication change.

Going

off Esprin and on to another. The DR is concerned with 's

prednisone. We can't seem to get down past 10mg a day w/out a lot of

pain.

Marcie

Hi Marcie,

Yup. I definitely know what that's like. Josh has been taking the

steroids ever since he first got sick. Five and a half years, now.

How long has been taking them? My best advice would be to continue

trying to taper but to go really slow, very gradually. It's easier for

some but if your daughter is sensitive to even small changes, like my

son always was, patience is the key. Sometimes he wasn't stable or well

enough to drop even one milligram a month. If you rush it, you'll likely

wind up having to double the dose just to get back to where you were

before the tiny decrease. Very stressful situation. I'm still not fully

comprehending that Josh has made it down to 8mgs. We couldn't get lower

than 10mgs before either. This time, at a snail's pace, it seems to be

working out. I hope the same will be true for . Good Luck.

Take care,

Georgina

[Guest guest]

In a message dated 10/28/2000 11:39:49 PM Pacific Standard Time,

gmckin@... writes:

> steroids ever since he first got sick. Five and a half years, now.

> How long has been taking them?

4 years. She is having a really rough time right now. She is in a play and

keeps pushing herself. I figure at 17 she can make those decisions, for the

most part. I miss the days moms kiss could make the hurt go away

Marcie, s Mom

[Guest guest]

I take Prednisone and how come I don't feel smarter??? LOL!

Jackie, Mom to 13ds

[Guest guest]

I was taking some pretty large doses of prednisone for a short period of time

due to optic neuritis. While I was on it I needed very little sleep and had

tons of energy to accomplish tasks. It was really cool to be able to sleep

for four hours, feel energetic, and get tons done. The drawback was the water

retention, weight gain. Maybe it causes your daughter to be more alert.

Jodi

[Guest guest]

Hi Holly - I have been doing some slow prednisone reduction - at 1/2 mg per

fortnight - which has worked quite well for me. I find that 2 days after each

reduction is the hardest time and then I gradually adjust . Once or twice I have

left the reduction for 3 weeks if I haven't felt quite up to it.

I have reduced from 15 mg daily last October to 8.5 mg daily currently. My ESR

at 45 and CRP at 12 have stayed fairly stable.

Barbara

stephen hall wrote:

> Hi everyone. I haven't posted in a while, I've had a rough couple of months

> trying to get down or off my prednisone. Thus I have pretty much been in

> " survival " mode. So far no luck but have dropped the anti-inflammatory.

> __________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

Thanks Jerry, a very well-written article. You must have more

patience than I do - whenever I do a web search, I never take the

time to read through them all and pick out the good ones.

> This page is a pretty good one. It tells some of the effects of

coming

> off it as well as those when you`re on it.

>

>

> http://www.gihealth.com/TREC2/articles/drugs/prednisone.html

[Guest guest]

Thanks for the support, Georgina. It is hard to tell a kid he has to

give up the one thing he thinks makes him feel better. He keeps

asking me when he can quit taking all the drugs. I tell him

Prednisone 1st, then MTX, which is what his Drs have said.

His answer is " then I will be taking them forever " . The teenage mind!

Jana

[Guest guest]

Hi everyone, I thought my Dr. said it takes a few months for the prednisone

to totally leave your system..actually i think he said it takes 6 months for

the adrenal glands to start producing their own hormones,I had to put

back up 1 mg of prednisone, he was on 1mg. but his leg started to hurt so he

is on 2 now..everyone keeps commenting that he has grown, but I think its

because he has lost so much weight and puffiness from the high dose

prednisone, I think being thin makes him look taller!! The play he is in is

on Wednesday. I am so excited he landed a leading role..because I know that

means he is feeling so much better about himself, he was always so self

conscious of his appearance ..and for him to get up there in front of the

whole school and parents really says alot about how his self esteem has

soared...(He is in 4th grade) I can't tell you how happy that makes my

husband and I. We used to try to build hid self esteem, but I guess it is

something that has just come to them themselves...well wishing you all the

best.. Jane conlon

[Guest guest]

Hi Jana,

Josh is always interested in hearing what Robbie thinks about the meds issues.

Sort of like a slightly-older role model who knows what he's going through. I

wish Josh was interested in having a pen pal, as our boys might have a lot in

common and have many stories to share but ... it's just not his 'thing.' : (

After we talked about your recent comments, Josh said " I can't believe he

doesn't want to try to go lower sooner. But maybe he knows how sore he'll get. I

hope he will try to lower them after basketball is over. " And Josh is excited

about his upcoming appt because maybe the doctor will give the okay for him to

lower. Well, I'm not so sure if that's even a good idea. I thought the kids were

supposed to level off and get pain/symptom free before the next taper. That has

NOT happened for Josh. But he thinks it'll still be okay. He's having pain now,

so what difference does it make if he goes lower and has pain? But ... I don't

want things to get LOTS worse than they already are right now. I remember, too

vividly, those periods of inactivity and daily joint symptoms and fevers, which

really put a damper on his life. Too tired and sore to go to school, to go out

to play, to do just about anything beside want to sleep lots. Yikes. Just the

thought scares me. At least right now it's been a mix of some good days, some

not so bad days, and just a few days when he has absolutely no energy at all.

Feels like we're walking on a tight-rope....

Take care,

Georgina

Thanks for the support, Georgina. It is hard to tell a kid he has to

give up the one thing he thinks makes him feel better. He keeps

asking me when he can quit taking all the drugs. I tell him

Prednisone 1st, then MTX, which is what his Drs have said.

His answer is " then I will be taking them forever " . The teenage mind!

Jana

[Guest guest]

Hi Jane,

I'm not a hundred percent certain but I do remember discussing this with Helge

('s Dad) some time ago. You're right. It takes a while before the

adrenal glands will start producing again after it's been supplemented but the

drug does metabolize out of the body much more quickly than a few months. Arava

takes months ... prednisone's half life can be measured in hours. Which is why,

if a child is late for a dose, they can start having side effects. Maybe

somebody here remembers the exact half life? I know this matter came up once

when Helge and I were speaking about the differences between prednisone and

prednisolone. Prednisolone stays for much longer in the body.

Take care,

Georgina

Hi everyone, I thought my Dr. said it takes a few months for the prednisone

to totally leave your system..actually i think he said it takes 6 months for

the adrenal glands to start producing their own hormones

[Guest guest]

>From: Sara Robyn

>Subject: [ ] prednisone

>Hi Everyone->I was wondering what experiences people have had with prednisone.

Hi -- I was on moderate to low doses for about two years, and my

only bad side was weight gain. On the other hand, my mother was

on high doses for less than a year and now she can barely stand

up without breaking vertibrae (no exaggeration). I would call

prednisone, and steroids in general, anything but "safe." They

come with an amazing amount of side effects you should really

think twice about -- talk to your OB-GYN and your Rheumy before

you decide anything.

I still use it, occasionally, when I know I am in for a rough time. In

a few weeks I am going to a 14-day retreat -- sitting meditation for

15 hours a day for almost two weeks. I'll be taking my prednisone along,

believe me. But that is all I find it good for -- very short periods when

you have little other choice.

Hope this helps --

, NJ Highlands

raharris@...

http://satipatthana.org

[Guest guest]

In a message dated 3/27/2001 2:05:54 PM Eastern Standard Time, advocacy@... writes:

was wondering what experiences people have had with prednisone

Sara - Prednisone was the only thing that calmed me down during a flare and kept me out of a wheelchair - but it's been hard to wean off of it. I'm finally down to 2.5 mg. just a couple of times a week and am hoping to stop in April completely. For me, it makes me cranky and hungry and sends my blood sugar soaring (I'm diabetic) - but I guess with PA you really learn to take the good with the bad??

[Guest guest]

Sara,

I'm on prednisone, have been for 6 months along

w/mtx, folic acid........it tends to make me

hyper but haven't had problems w/lab tests.

How did the remicade work for you......i am to

get my second infusion tomorrow

afternoon......how soon did you see results?

glad you did get off the other drugs before

trying to become pregnant.

at one time i took zorprin - 800 mg.....it is

basically aspirin, timed release, does'nt harm

stomach....i took 4 a day, 2 and 2. you may want

to check it out

nanc

nrambo165@...

--- Sara Robyn <advocacy@...> wrote:

> Hi Everyone-

>

> I was wondering what experiences people have

> had with prednisone. I am

> trying to conceive and have had to get off my

> miraculous Remicade, and of

> course MTX. I'm not doing well at all - I went

> from a sed rate of 9 to one

> of 90 in two months. Prednisone is pretty much

> the only safe alternative

> they can offer me, but I have heard so many

> horror stories about it. I'd

> love any input.

>

> Sara in Los Angeles

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Thanks for your reply

I was on a 2 year study for osteoporosis and my

bone density increased by 5% and have now been

told that i could have lost in 6 months what i

gained in 2 years. being 53 years of age this

isn't good. rheumy is going to send me for

follow up bone density.

i have not had the weight gain which i was

concerned about - not just for looks but for more

weight to deal w/to move around and joints to

bear

nanc

nrambo1651@...

--- <raharris@...> wrote:

> >From: Sara Robyn

> >Subject: [ ] prednisone

> >Hi Everyone-

> >I was wondering what experiences people have

> had with prednisone.

>

> Hi -- I was on moderate to low doses for about

> two years, and my

> only bad side was weight gain. On the other

> hand, my mother was

> on high doses for less than a year and now she

> can barely stand

> up without breaking vertibrae (no

> exaggeration). I would call

> prednisone, and steroids in general, anything

> but " safe. " They

> come with an amazing amount of side effects you

> should really

> think twice about -- talk to your OB-GYN and

> your Rheumy before

> you decide anything.

>

> I still use it, occasionally, when I know I am

> in for a rough time. In

> a few weeks I am going to a 14-day retreat --

> sitting meditation for

> 15 hours a day for almost two weeks. I'll be

> taking my prednisone along,

> believe me. But that is all I find it good for

> -- very short periods when

> you have little other choice.

>

> Hope this helps --

> , NJ Highlands

> raharris@...

> http://satipatthana.org

>

__________________________________________________

[Guest guest]

Hi Sara,

In August 1994, I had orthoscopic knee surgery after which I was diagnosed

with psoriatic arthritis. In

October 1994 I had a severe asthma attack. I was treated in the ER with 60

mg doses of prednisone, since

prednisone can be used to reduce inflammation in our lungs as well as our

joints. From 1994 until I had both

double hip and double knee replacement surgeries in 1998, my prednisone

dosage was about 20 mg daily.

Beginning in 1999 I gradually reduced my dosage to zero by December 2000.

But, by the middle of February

2001 I had lost my appetite and had lost about 20 pounds in weight. So I

checked again with my doctor who

told me that my latest blood sed rate was high; which indicated to him that

I should resume taking prednisone

again in small daily doses of 5 mg tablets twice a day. Since I did that I

have felt much better and I have a

better appetite and have regained some of the weight I lost. Meanwhile, on

February 23 2001, I had surgery

again for a benign growth on my parathyroid glands. The first parathyroid

surgery was in June 1998 before

my hip replacement operations. Finally, on March 15, 2001, I came down with

a mild case of shingles on

my face.

Sincerely,

Bill in Washington, DC

[ ] prednisone

>Hi Everyone-

>

>I was wondering what experiences people have had with prednisone. I am

>trying to conceive and have had to get off my miraculous Remicade, and of

>course MTX. I'm not doing well at all - I went from a sed rate of 9 to one

>of 90 in two months. Prednisone is pretty much the only safe alternative

>they can offer me, but I have heard so many horror stories about it. I'd

>love any input.

>

>Sara in Los Angeles

>

>

>

>

>

>

>

>

[Guest guest]

I've been on it for the last two months. I had one serious complication,

but it was after major surgery. I haemorrhaged in the recovery room and was

very close to having to go back to the OR for repacking, as well as needing

a blood transfusion. It was definitely caused by the Prednisone.

The 'everyday' side effects I have are that I am a diabetic, and the

prednisone made that go out of control. Because of that, I have had to

lower my dose to a maintenance dose of 5 mg every two days, and that has

resulted in a return to pain and swelling in my toes and ankle, and now my

knee, hip and shoulder joints are getting into the act. There is one other,

and that is that my face had started to swell and that is the main reason my

GP pulled the plug on the Prednisone. Unfortunately, I have no choice but

to accept that limitation before I can get to a rheumatologist and get a

prescription for something stronger that won't push my blood sugars up.

That's a month away, with several hours of driving and two ferries - I so

miss living in a big city with everything I need right there.

Hope this helps somewhat.

P.S. Today totally sucks! It's been cold and raining since last night and

every joint and muscle I have is in competition with each other to see which

one can make me the most miserable

[ ] prednisone

Hi Everyone-

I was wondering what experiences people have had with prednisone. I am

trying to conceive and have had to get off my miraculous Remicade, and of

course MTX. I'm not doing well at all - I went from a sed rate of 9 to one

of 90 in two months. Prednisone is pretty much the only safe alternative

they can offer me, but I have heard so many horror stories about it. I'd

love any input.

Sara in Los Angeles

[Guest guest]

Hi Sara

You asked about prednisone. I did take it for two years and yes it does help

the pain but there is such a lot of side effects. Like weight gain and

getting really puffy. I was on 50mg to start and then they weened me done

1mg every three weeks to 15mg where I stayed for a long time then they

weaned me off as my weight increase was great and it was affecting my heart.

You are best to talk to your Doctor or Ruhmey about this as they are the

best judge as we know what suites one does not suit all.

I hope you find a solution and all the best with trying to have a baby.

God Bless

Beverley in Australia

[Guest guest]

Hi Sara,

My experience with prednisone: I don't remember the dosage, but I

was on it for 6 days several weeks ago...didn't like it at all.

Prior to that I never had any problems with my hips and knees, but on

the second day of taking it they started " freezing up " so that I was

having trouble walking; then they started hurting and have been

giving me trouble ever since. The pred also made me jittery and

irritable. If you do go on it I hope you have better luck than I did.

Take care,

> Hi Everyone-

>

> I was wondering what experiences people have had with prednisone. I

am

> trying to conceive and have had to get off my miraculous Remicade,

and of

> course MTX. I'm not doing well at all - I went from a sed rate of 9

to one

> of 90 in two months. Prednisone is pretty much the only safe

alternative

> they can offer me, but I have heard so many horror stories about

it. I'd

> love any input.

>

> Sara in Los Angeles

[Guest guest]

Gayle

Thank you for your input it made me think and yes I did shake before they

found out what that I had AIH. I also wish I could stop the acne breakouts,

but the main thing is that it is lowering my LFT'S.

Becky Yes I was awake at 200AM this morning I have had to retype this at

least four times I am so tired. I finally got to sleep about 300AM and my

Daughter called at 800AM. I am so tired during the day that I am wired and

can not rest or sleep.

Glo

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

>>> beesnees@... 11/07/01 04:13PM >>>

The key is how much prednisone you are taking.

Basically, if your at a low dose, the effect on your physiology is minimal.

Barry,

But how long can you stay at doses under 20 mg? I have been bouncing between

5-15mg prednisone for over a year now. I don't want to have to be on

prednisone for the rest of my life. They say long term use can cause glaucoma

and bone loss, among other things. Is that only with the higher doses or can

that affect everyone who takes it? I am curious how many people on the board

are on prednisone, how much they are taking and for how long?

Thanks,

[Guest guest]

Bet I take the prize for being on Pred. the longest....40 years!!

During that time the doses have varied but mostly they have been below 20mgs,

about 10mgs .

I do not recommend it and advise people to try to avoid it if they possibly can.

Having said that there are times when it is appropriate to take Pred.

As for what effects one ends up with? Like everything else it varies from person

to person.

Yes, I have glaucoma, but the worst side effect for me has been very weak

muscles.

Nothing that supresses the immune system is good as it has far reaching

implications for all of the bodies 'systems.' I can give you a long list of

things that are wrong with me which I believe can be laid at the door of 'long

term steroid use.' One thing affects another and so on:-((

huggles,

lisbeth

Hi

But how long can you stay at doses under 20 mg? I have been bouncing between

5-15mg prednisone for over a year now. I don't want to have to be on

prednisone for the rest of my life. They say long term use can cause glaucoma

and bone loss, among other things. Is that only with the higher doses or can

that affect everyone who takes it? I am curious how many people on the board

are on prednisone, how much they are taking and for how long?

Thanks,

[Guest guest]

In a message dated 1/8/02 10:38:40 AM Pacific Standard Time, bamrand@... writes:

Hi Everyone! I hope all is well. Since the topic lately is prednisone I thought I would pass on what my hepatologist just told me. Apparently your body makes 7.5mg of prednisone every day and the prednisone that we take replaces that and your body quits making it.

So once you are down to 7.5mg it's really supposed to be like not being on prednisone at all. He told me this because I got really down when he said I would probably stay on 10mg for a LONG time!! He said it was really like being on 2.5. The 7.5 my body usually makes and the 2.5 extra. I knew my body made it but wasn't sure of the exacts. I hope this helps a little. The doc did say that my side effects should subside once I get down to 10(keeping my fingers crossed). He also said I will need to wear a medical bracelet stating I'm on prednisone. If you are involved in something traumatic like a car accident the docs need to know to give you Extra prednisone. Normally your body would produce it but it has stopped due to taking the oral.

Bethanne, this is the same thing that my doctor told me, except for the part about the medical information bracelet. And, it agrees with what I read. Perhaps the bracelet is something we all need to think about. Have other people heard that a medical information bracelet is needed? I don't wanna if I don't hafta.

I've been on 5 mg for many months (down from 80 mg). I asked my gp why I still feel strange and why I'm not losing weight at 5 mg. (She is not in charge of my liver treatment.) She very quietly muttered something about thinking that the body may process administered prednisone differently from the natural hormone. I don't know if this is a private hypothesis of hers or something that is generally believed in the medical community. Or, perhaps she was just trying to say something polite rather than "Harper, it's your own damn fault if you're still spacey and fat!"

Harper