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Dear Group,

The following is an interesting web page that relates Prednisone to weight

gain:

http://vasculitis.med.jhu.edu/treatments/prednisone.html

The bottom line is that Prednisone is a steroid, which tends to put on

weight. " Weight gain is usually the most dreaded side effects of steroid

use, incurred to some degree by nearly all patients who take them. The

amount of weight gain varies from individual to individual. In addition to

causing weight gain, prednisone leads to a redistribution of body fat to

places that are undesirable, particularly the face, back of the neck, and

abdomen. "

Regards, Harald

>In a message dated 2/21/03 7:14:56 AM, melinda159@... writes:

>Did you mean to write: I have gained some weight on prednisone although I

>am eating less. I am no[w] getting off the pred. Will some of the weight

>go away?

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Dear ,

Fantastic! Now can they lower it gradually?

Re: [ ]

prednisone

Cheryl,

I have said many, many prayers of

thanksgiving that my liver seemed to respond so well to only 20 mg of

prednisone daily! I truly feel I am one of the lucky ones!

W

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,

Yes - we've already started lowering my prednisone. I went down to 17.5 mg a day (from 20 mg) on Saturday. I will lower the dose 2.5 mg a day every two weeks until I get it down to 10 mg a day in April. I'm thankful to be able to begin lowering it so soon. Even though I've been lucky not have any really bad side effects, it is causing problems with my blood sugar, it makes me nauseated, and I've got that stupid metallic taste in the back of my throat again!

So, every single mg drop in the prednisone is a blessing as far as I'm concerned!

W

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Hi ,

When they lowered mine from 30 then to 20

then to 17.5 then 15, I was OK. But when I went from 10 to 5, I was cranky and

tired. I missed all the energy I had while on 20. 30 had me wired all night,

didn’t like that at all because I couldn’t do my job properly

because I was so fuzzy. But I think if I didn’t know, I wouldn’t

have been looking for the side effects so much.

Hope everything goes well as they lower

yours!

I gained 25 pounds but I needed it as I

lost weight and looked like a skeleton. Now I am at my normal weight for the

first time, not underweight anymore.

Re: [ ]

prednisone

,

Yes - we've already started lowering

my prednisone. I went down to 17.5 mg a day (from 20 mg) on

Saturday. I will lower the dose 2.5 mg a day every two weeks until I get

it down to 10 mg a day in April. I'm thankful to be able to begin

lowering it so soon. Even though I've been lucky not have any really bad

side effects, it is causing problems with my blood sugar, it makes me

nauseated, and I've got that stupid metallic taste in the back of my throat again!

So, every single mg drop in the

prednisone is a blessing as far as I'm concerned!

W

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  • 3 months later...
Guest guest

I received a letter from my doctor, he says he wants to put me on MTX and or

Embrel/Remicade... After Prednisone.. humm side-effects...

argggg shitty PA

Jean

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In a message dated 6/18/2003 2:10:33 PM Pacific Daylight Time,

SurfcityCL@... writes:

> I have also heard that hydrocortisone

> has less side effects. The doctors I have been to are just not

> knowledgeable

> enough on the subject. Does anyone know of a book on the subject. I saw

> one

> on the net called " Coping with Prednisone " , but don't know if it is a good

> one.

Hi Carol,

I dont have answers for you on this as usually I was given steroids while

in the hospital, and remember being very dizzy when coming off of them. I just

wanted to say to you Kudos to you, Congratulations for educating your self on

the medications you are putting in your body, and making choices based upon

your own research. ((((*)))))

Ann Pritchard

" Deep in the center of our beings

is an infinite wealth of love "

<A

HREF= " http://www.rheumatic.org/medhist.htm " >http://www.rheumatic.org/medhist.htm\

</A> < latest published work.

<A

HREF= " http://groups.msn.com/TyroMedia/pictures " >http://groups.msn.com/TyroMedia/\

pictures</A> < latest photos

<A HREF= " http://melungeon_music.tripod.com/melungeonmusic/ " >Melungeon Music</A>

< 's Web Site

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I read the book Coping with Prednisone - it was a long time ago, but it did

help me to understand the side effects, etc. and help me cope with taking

that awful drug. I am happy to say that with AP I was able to get off

prednisone for good and I am in remission from my dermatomyositis!

Good luck Carol!

Liesl

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Prednisone is used to get the short term pain down. Try 10 mgs a day.

After 4 weeks go for the biologic. I am not a great advocate of MTX (Mustard

Gas) and believe this patient group should be doing more to lobby the decision

makers to increase access for patients.

br -rob

[Ed. Note: MUSTARD GAS!? Are you just being flippant Rob, or is that for real?

If so, it sounds like there's a great story there. Please fill us in on as much

as you know about the connection between Methotrexate and Mustard Gas. Do you

have any Internet links, etc., for further information? Thanks, Ron]

> Teneglio <jean_teneglio@...> wrote:

> I received a letter from my doctor, he says he wants to put

> me on MTX and or Embrel/Remicade... After Prednisone..

> humm side-effects...

> Jean

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  • 3 weeks later...
Guest guest

I went off the prednisone over a six month period of time and had little

problem. However, I had to stop the IV's because of health insurance issues.

This created numerous med problems and eventually I was able to get a good pain

management program going which included 5 mg prednisone. The VA doctors (who

experiment perpetually) were adamant that prednisone would not help.

Eventually after I complained that I was more functional when I was on the

prednisone,

they gave in and said they would try it. What was interesting to me was the

numerous reports and studies they quoted to the head Rheumatologist that

anything under 10 mg had shown no adverse effect on adrenal or other functions

even

over the long term. He had been not allowing it because he knew I was on the

AP and he wanted me to be on methotrexate. The interns listened to me and

read what I gave them and after eight months of being virtually non-functional

and showing him the reports he caved. Three months later was my last app't at

the VA and that was two years ago. I continue to improve (I have since also

resumed IV's weekly) and stay on 5 mg prednisone. The reason I responded was to

primarily highlight the SLOW tapering of prednisone.I changed from 5 mg

tablets to 1 mg tablets. Then, 1/2 at a time every two weeks it was not

uncomfortable at all and I maintained functionality as well. Just a thought!

Marc SSD

7 yrs AP 6yrs

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  • 3 months later...

Hi Liz,

Concerning prednisone, I had taken this drug since 1993 for asthma and PA. In

1998

I had both double hip & double knee replacement surgeries during that summer,

plus

I had surgery to remove one of my four parathyroid glands because prednisone

raised

the calcium level of my blood serum. Also, I had a second surgery in February

2001

to remove my second parathyroid gland, because I still had not stopped taking

this

drug called prednisone. In 2002 I finally stopped taking this drug but not

before I was

diagnosed with prednisone induced diabetes. So, this drug often relieves

internal

inflammation, but it has major side effects. Moreover, I am one of the few

men under

65 who has been diagnosed with osteoporosis in 2001.

Sincerely,

Bill age 60 living well in Washington DC

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Hi Liz,

So sorry you have had a bad flare. Rheums I have had have tried 5-10

mg. of Pred all the time. It didn't work for me and in way I am

glad. We are all different and I have heard of people taking as

little as 2mg daily that helped them. Side effects-bone loss-

osteoporsis, weight gain, moon face, possibly even internal organ

damage, masked infections.etc This approach seems to be cyclical in

that years ago they gave it, it fell out of favor for obvious

reasons, and now they are back giving it again.

See you at the chat!

Marti

> My mobility is the pits…..need a hip replacement, ASAP. I haven't

been

> in a lot of " pain " , but I can hardly walk from one end of my house

to

> the other. Then a couple of weeks ago, I started really feeling

worse

> all over…..a general feeling of crappy. (Sed rate 55, low grade

> fever….just felt like it took every ounce of energy I could muster

to do

> the most routine tasks like take a shower and brush my teeth!)

>

>

>

> I've been on the usual prescriptions including Enbrel, and just kept

> feeling more and more rotten. The doc gave me a 16 day dose of

> prednisone…….I'm about ½ way through it and feel like a human again!

> I've had this dosage once before and it seemed to work miracles then

> too. I'd like some feedback on prednisone taken in minimum doses,

24/7.

> How small of dose could I take daily and get any results? Don't

some of

> you take it in small doses all the time? Why is it so effective……

and

> other than dependence on it, what are the dangers? I sure do enjoy

> feeling human, even if I do look like an overweight, aging toddler

when

> I walk.

>

>

>

> Thanks for your insight………….Liz

>

>

>

>

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I take 1.25 mgs daily (along with 25mgs vioxx and 200 mgs

doxycycline and occasional cortisone injections).

I started taking 25 mgs prednisone daily last December in

desperation for an extreme flare that had been going on for a year

(I've had PA for 5 and a half years but it was never that bad until

a couple of years ago). When I first took it, the prednisone felt

like an absolute miracle. My flare seemed to disappear almost

entirely. But I was well aware of the bad side effects and I never

wanted to stay on prednisone permanently

I tapered down from 25 mgs to 5 mgs gradually over the course of a

month and stayed at that level until about 4 months ago. I then

switched from ibuprofen to vioxx and from 100mgs doxy to 200 mgs

doxy about the same time (4 month ago). After that I felt great

improvement and was able to taper down further to 1.25 mgs

prednisone.

I'm not sure what to attribute the improvement to. But I really am

vastly improved, so something is working.

I hope to eventually get off prednisone completely, but it's hard.

These 1.25 mgs really still make a difference. Every time I try to

reduce the dosage further, I begin to feel a flare starting.

I don't have any noticable side effects so far from the prednisone.

I think such a small dosage is not that bad, as long as I can get

off it eventually.

Sharon

> My mobility is the pits…..need a hip replacement, ASAP. I haven't

been

> in a lot of " pain " , but I can hardly walk from one end of my house

to

> the other. Then a couple of weeks ago, I started really feeling

worse

> all over…..a general feeling of crappy. (Sed rate 55, low grade

> fever….just felt like it took every ounce of energy I could muster

to do

> the most routine tasks like take a shower and brush my teeth!)

>

>

>

> I've been on the usual prescriptions including Enbrel, and just

kept

> feeling more and more rotten. The doc gave me a 16 day dose of

> prednisone…….I'm about ½ way through it and feel like a human

again!

> I've had this dosage once before and it seemed to work miracles

then

> too. I'd like some feedback on prednisone taken in minimum doses,

24/7.

> How small of dose could I take daily and get any results? Don't

some of

> you take it in small doses all the time? Why is it so effective……

and

> other than dependence on it, what are the dangers? I sure do enjoy

> feeling human, even if I do look like an overweight, aging toddler

when

> I walk.

>

>

>

> Thanks for your insight………….Liz

>

>

>

>

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  • 1 month later...

Kay,

Why did you go off pred? I take it on and off (medrol dose pak and/or

depo-medrol injections), and am just curious. Did you have any side effects?

What were they? I try not to take too much pred but it really helps with the

inflammation I get in my mouth and internally, as well as with the joint pain.

What dosage were you on? I would like to get on it permanently since Celebrex

does not alleviate the flares. The old nsaid's were the only ones that

alleviated all symptoms, however, they destroyed my stomach and it took a year

to heal when I got off them.

Thanks...Debra

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Kay,

Why did you go off pred? I take it on and off (medrol dose pak and/or

depo-medrol injections), and am just curious. Did you have any side effects?

What were they? I try not to take too much pred but it really helps with the

inflammation I get in my mouth and internally, as well as with the joint pain.

What dosage were you on? I would like to get on it permanently since Celebrex

does not alleviate the flares. The old nsaid's were the only ones that

alleviated all symptoms, however, they destroyed my stomach and it took a year

to heal when I got off them.

Thanks...Debra

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Kay,

Thanks so much for the info. Did you actually experience weight gain from the

pred, or just roundness in the face? I have to diet all the time, even though

I am not on pred full time. I had a bone density test done and it was ok

though. Did you ever have this test? The only reason I am considering the pred

is

that I get such horriffic symptoms in my mouth....I could deal with body pain

much better...but the mouth...I just can't stand it any longer. It does calm

down at times, but not for long and Celebrex doesn't cut it for the mouth

symptoms. Pred takes them away within a day! I am only on low doses....I don't

even

take the full dose pak unless I get severe to the point where I can't swallow

and feel like I am burning up inside...although I never actually have a

fever. I try to take 2 to 4 mg and see if it helps. It usually does if I catch

it

right away. This illness has really affected my life, as I find myself planning

everything around it. I can never do much or there I go right back into a

flare.

Debra!

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Hi Debra, I had been on Prednisone for almost a decade. I was taking 10 mg.

for the past several years but had been on doses as high as 100 mg for short

periods. I was concerned about long term effects--bone thinning, high

cholesterol, etc. Also part of it was vanity--my face was round. I would avoid

going on it fulltime. I noticed when I finally came off it (very gradually) I

was much more achy. I have increased Mobic and it is helping.

Kay Braddock

Speedway German Wirehaired Pointers

Paint Horses

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How long does it take for the round face affect of Pred to happen? Adrienne

is going on a Pred Dose Pack for the next... week or two. I remember (and

have pictures) of when she was on it long term and how round her face got. She

called pictures of herself during that time " the prednisone poster child'

K

Adrienne's Mom

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Adrienne's Mom,

My rheumatologist told me that it would take longer than a few months;

that was the longest time I was on it. I knew someone who was on it for

years and they definitely had a round face. So, it must be somewhere in

between those. Sorry, I can't be more exact.

Pat

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I knew someone who was on it for

years and they definitely had a round face

Whew, sounds like she shouldn't get a round face then from the week or two

she has to do the dose pack.

I recall the rounder fuller face when she was on it for about a year. But I

didn't recall how long it took to happen.

Thank you!!!

K

Adrienne's Mom

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Debra,

I did not gain weight, I just developed a round face. I tend to stay on the

thin side anyway. As with medication you need to weigh the benefit vs. risk.

If 2 to 4 mg. makes a big difference in how you feel you might want to discuss

full time use with your doctor. I think most of the side effects with

prednisone are dose related. Just keep in mind that there are dangers in immune

suppression. Have you tried other alternatives such as an increase or change in

NSAIDs? For me increasing the amount of Mobic that I take has proved helpful.

I have had bone scans done and my bones are in good shape in spite of the years

of taking Prednisone. I've been pretty lucky in that respect. Hope you feel

better soon.

Kay Braddock

Speedway German Wirehaired Pointers

Paint Horses

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Adriennes Mom:

I am on dosepak several times a year and low doses every month (4-8 mg per

day when I get my period since it sets off a flare every single month)....and I

get depo-medrol shots 2 to 3 times a year....I do not have a round face and

I've noted no tendency to gain weight that is actually related to pred. I had to

diet before I went on the pred anyway. I've seen stories on TV where people

are on low doses and do gain alot of weight (people who are in accidents, etc.

and have inflammation that won't subside), but this has not happened to me. My

face is a bit too thin in my opinion so I wouldn't mind a bit of fullness...I

just don't want any fullness to develop in the waist! I think it doesn't

happen as long as you have breaks in between and are not on a constant

dose...and

also are not laid up in bed. I'm told inactivity plays a big role in this,

although I am not able to exercise much at all since I got reiters.

My older son is around Adriennes age - he is 21 (I've been reading the posts

but not participating) and he began developing arthospondylitis around 15. I

can see he's on the path to developing reiters though, as he gets fatigued

easily and gets alot of aches and pains and bouts of diarrhea. He was on NSAID's

for awhile a few years ago but has been off for some time now. Just curious if

anyone else in your family has it?? Can't remember if you said you had it too?

My younger son is also on the same path, he's already getting bouts of

diarrhea at 11 and of course, the pediatrician thinks nothing of it. The older

one

recently saw another doctor in the same rheumatology practice who said he

doesn't have anything!!! (Mind you, he was diagnosed by my rheumatologist who

has

25 years of experience).

The thing that is so ashame is that there isn't anything I can do to stop it,

except teach them to take good care of themselves. My older son has taken

pred a few times when he was in severe pain, but never for more than a day or

two. He is not as sick as Adrienne is though and he goes for long periods

without

too many symptoms. I do hope Adrienne finds some relief, it's really

difficult to be sick at that age when all your friends are out having fun.

Debra!

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Dear Debra,

I am 56 and have been on prednisone for over 20 years...I thought it was a

miracle drug (and it was) for a number of years, but now I am having side

effects. I have NEVER taken over 10 mg and started out taking 3. Now I need 8

to function, and I have to admit that I hurt a lot. I have tried Celebrex and

all the Nsaids. I have had both knees replaced and one hip. People tell me

that is because of the prednisone, but I am not sure. I have AS and now that I

am only on prednisone and Vioxx (50 mg. a day) I have a lot of pain in the

shoulders. I think the arthritis travels. My knees and hip are better because

they are fake, but the disease is looking for new territory to develop in. I

have tried Enbrel and was able to get down to 3 mg of prednisone with the drug,

but my doc and I decided if I couldn't get off prednisone completely, that it

wasn't worth the side effect risk then of the Enbrel. He has changed his mind

now. I will restart the Enbrel soon...as soon as Blue Cross approves it for me

again. He now believes prednisone is a longer term danger. I am telling you to

try some other meds before you go on prednisone full time. It is addictive. I

am addicted at this time. I teach school full time and couldn't without it. I,

of course, do not know your situation, but I do know that long term prednisone

use is not good. I am going to retire (31 years teaching English) in a year and

a half and hope I will be on a lower dose or maybe off it by then. My eyes also

have suffered. My glasses need to be changed periodically. Old age? Maybe.

Prednisone? Maybe. Hope this helps you make a decision. Sincerely, Debby

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Debbie,

I really don't want to go on the pred full-time, and am considering minocin,

which I'm told seems to work. Just curious, did you have a bone density done?

I did last year and it was ok. but I am only on part-time pred doses and shots

a few times a year, so I assume that is not enough to have an effect. I've

noticed that sometimes, while pred will take down my mouth inflammation, I seem

to get alot of aches and pains while on it. Is that what you meant when you

said you hurt alot? Or is that from reducing the dose?

I was on dosepak a few times a few months ago and I seemed to have lots of

bone pain afterward. Now that I'm taking a bit again (2mg only) I seem to have

the same pain again, although I'm not sure if it's from snow clearing (exercise

kills me) or my anemia, which has worsened after having 14 vials of blood

taken a week ago. All I know is I feel terrible right now.

Do you have reiters too...or just AS?

Thanks so much for the input, I really appreciate it. It's difficult trying

to make the right decision here.

Debra!

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Debby,

I stopped taking prednisone two weeks ago. I don't ever want to take it

again. I was on it for over a year, between 6 - 10 mgs. per day. I wasn't

able to stop taking it until I had been on Enbrel for 8 months. I am glad

you are getting back on Enbrel. It totally cured my sores on the tongue and

soft palate, and it must be helping everything else because I'm off pred.

for the first time in over a year. I think even if you can only lower the

prednisone dose, it is well worth it.

My rheumy. doesn't approve of me going off prednisone, but I don't want to

take it anymore. Once my brain decides I'm not taking something, that's all

she wrote. When I was 10, doctors wanted me to take 7 aspirin a day, and I

refused to take any, because I wanted to have a stomach lining when I grew

up. It turns out I was right, now they know children shouldn't take

aspirin, so I trust my instincts on this stuff. Plus, once some part of my

brain makes that decision, there's no way I'm taking it anyway. It's a very

stubborn section of my brain that makes these decisions.

Good luck with getting back on Enbrel.

Janet in SF

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  • 1 month later...

Hi Lori.

When I started taking oral prednisone I was told that it would take 10 to 14

days to start to saturate enough to begin working. I had tons of adverse side

effects from these meds. They made me feel terrible and I was sick often.

Personally, I hate prednisone and will never take it again.

Just my 2 cents worth.

Keep smilin' !

Randy Higgins

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