pred

[Guest guest]

Hi Geri,

I'm glad you're back. Thank you for the thoughtful response. It's always

good to hear different perspectives. I've often wondered why my friend

hasn't had too many side effects from the pred. It's true that there are

many different factors involved. She's very private about her illness, so I

don't pry unless she offers information. I know it's a stomach illness, and

she's had it since she was 8. She wrote me about being on pred. after I

wrote a collective e-mail to my friends telling them about my diagnosis (the

easiest way). I was flipping out about having to take the meds, so she

wrote me back to reassure me. She has been on heavy meds periodically since

she was 8. I imagine pretty high dosages, because they cost her a small

fortune. Apparently, she's had tests that show her bones and everything to

be fine. I think she's extremely lucky. No reported negative side effects

whatsoever. I wish everyone was this lucky. I'm worried about the meds. I

don't think it will be easy for me, because my body has always reacted so

strongly to anything foreign I've given it. Even smoking. First time, I

broke out in hives over my entire body! I don't know. I'm trying to be

optimistic, but I know I'm going to take it hard when I experience the first

negative side effect.

Geri, I'm sorry you've had such a hard time with these meds. The

experiences and knowledge you share helps so many people on this site. I

just wish you didn't have to go through them all to gain this insight. I'm

glad you shared your experience with me. I know my doctor wants to ease my

anxiety about the meds, but I'd rather have a realistic expectation of how

they are going to make me feel. Less upsetting later. Thanks again Geri.

Take care of yourself..

>From: Geri Spang <spangs@...>

>Reply- onelist

> onelist

>Subject: Re: [ ] working

>Date: Fri, 04 Jun 1999 01:35:13 -0700

>

>From: Geri Spang <spangs@...>

>

>Hi ,

>Just got back from San Diego and the number of messages is intimidating, so

>if I say something that you've already been told 20 times, forgive me.

>

>Had to comment on your friends who has been on Prednisone for years but has

>no weight problems. There are so many factors that have to be considered

>when doing comparisons. How many years was your friend taking pred and

>what was the dosage? If it wasn't high for a prolonged period, or if she

>never did take a high dosage, she might not have shown the effects. Since

>I've only been taking the stuff since early 1998, I only have limited

>experience. However, I have gone from 40 mgs. down to zero and back up to

>10 mgs., now weaning my way off again and back down to 6 mgs.

>

>First time I was withdrawn, it was in increments of 1 mg. every 2 weeks,

>starting when I was taking 20 mgs. By the time I was down to 10 mgs., I

>didn't see any physical difference except the moon face and hump back had

>disappeared. My weight stayed the same but I was having problems with

>fluid retention. On the very day I started 10 mgs., I woke up with giant

>hives all over my body and my Hepatologist referred to it as a severe

>immune system flareup. The Dermatologist wanted to put me back on 20 mgs.

>daily but the Hepatologist said I should only raise it to 15 mgs., and

>immediately start decreasing at 1 mg. per week instead of every 2 weeks.

>

>I went one month not taking pred at all and by the end of the month the

>joint and muscle pain, besides fatigue, was so bad I could barely get

>around. Also, my feet and ankles ballooned. At that point (my doctor was

>out for a few weeks because there was a new baby in the family) my

>Rheumatologist put me back on 10 mgs. daily. It took only 3 days before

>the pain was nearly gone but the edema continued until my doctor's

>associate doubled my diuretics. During the first week on doubled diuretics

>I lost 8 lbs. and it was great - no moon face or hump back and I could wear

>clothes that hadn't fit me for almost a year.

>

>However, gradually the pounds have been creeping back and I've regained

>about 4 lbs. and have a hint of a moon face and puffiness at the back of my

>neck again. I expect them to disappear as I decrease the pred again, but

>almost inevitably, despite taking way too many diuretics, my feet and

>ankles are starting to get puffy again.

>

>My conclusion: Pred caused the moon face and edema (we all know that) but

>it also suppressed whatever causes the edema. It's important to consider

>which is more medically dangerous - a fat face and a hump back or whatever

>condition makes feet and ankles swell.

>

>Another conclusion I've reached is that the negative effects of pred don't

>happen overnight but the positive effects of withdrawal don't happen

>quickly either.

>

>Your internist might be a little optimistic about how much better you'll

>feel after you start taking meds. I was sick as a dog for the first couple

>of months and gradually recovered to about 50% of normal (the way I was

>before I was taking the meds) but I didn't start to really feel good until

>I got off the stuff entirely for a month then started taking 10 mgs. daily.

> That respite period has lasted though I have more aches and pains now

>that

>I'm down to 6 mgs. Also, I get tired more quickly.

>

>The drug just doesn't seem to have a consistent effect so that some people

>get along with it well and others can barely tolerate it. My doctors also

>tend to make positive statements as though they are citing fact not

>speculation, but I think they're whistling in the dark. When I was taking

> 40 then 30 mgs. of pred, incidentally, the fatigue was worse than it's

>ever been. Only at the lower doses did I start to get my energy back.

>

>I gained about 37 lbs. in 6 months and I had a bout with facial hair but it

>didn't last long. One day it was there and then a couple of weeks later it

>was gone, and no one but me noticed it anyhow. It was a dark downy fuzz

>along my jaw line. I drink quite a bit of water but haven't seen

>that it does much except add to the aggravation that the diuretics are

>already causing. I never thought I'd become so intimately acquainted with

>our bathroom.

>

>You're young and determined and you are approaching this the right way.

>Listen to everybody and consider most of what you're told but most of all,

>you have to listen to your doctor and to your body. We can offer anecdotes

>and personal experience but each of us handles this differently and you may

>have no problems at all with the meds. If you do have some unexpected

>reactions, give them a chance so you can see if they subside after you're

>basically stabilized.

>Got to go. I don't think I'll be up all night tonight!

>Take care,

>Geri

>

>

>

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[Guest guest]

,

Your friend's success from taking Prednisone offers some hope for all of

us. It proves that not everyone has to assume that they will have all

those negative side effects. When I was first told that I'd have weight

gains and possibly a moon face, I doubted it could happen to me. Weight

has never been a problem and I couldn't see how that would change. I was

wrong. But, others have done just fine. Something for you to also

consider is your age vs. my age, for example. You're younger and I'm

assuming much more active so your metabolism is probably going to offset

whatever causes the extra weight. You also are determined not to let those

side effects take over and that's a plus on your side. I wasn't careful

enough but I think that you will be.

Drug sensitivites add to your problems, I know. When I first got this

unpleasant disease, I read someplace on Internet that Prednisalone (I

think) has fewer of the negative side effects than Prednisone though it

accomplishes the same positive effects. I haven't heard anyone in this

group mention it so I don't know if that's ever true. I'll have to take a

look in Internet to see if I can find out more about it. It might be an

option for you if you have a reaction to the meds. What you don't want is

to have your disease get out of control, even if it means spending awhile

being a esque young beauty.

The side effects of pred kind of sneak up on you. One morning when I

looked in the mirror for the first time that day, I saw a dark, downy

growth of hair along my jawline. That really bothered me. I was fairly

sick still at the time, so I didn't become preoccupied with it and lucky

for me, it disappeared after awhile just as quickly as it had appeared. I

also hated the hump at the back of my neck but I don't think that happens

to everyone. I didn't mind the full face so much at first since I've

always had a thin face and was curious about what I'd look like. But, not

everyone has any of these problems and there's no reason to believe that

you won't be one of those who breezes right through it.

I'm actually doing pretty well. I feel like an addict going through

withdrawal when I try to taper off pred, but otherwise, I couldn't feel

more normal. Chubbier than I ever thought I'd be, but I'm okay.

Just being alive is a learning experience, isn't it? Think of how boring

we'd all be if we'd never had to be tested by going through what we've all

experienced. I've learned a lot about people and human nature and it's

been positive. I've always had a very high regard for what I consider to

be the basic " nobility " of the human spirit and this group has done so much

to confirm what I had previously just suspected.

Hope your weekend is great.

Take care,

Geri

[Guest guest]

Hi Jen,

I've been on Pred since I was diagnosed in mid August. I was given

the horrible uncoated pred at first. What I found worked for me was

to take them with a whole glass of milk. Juice or water doesn't mask

the taste, but milk just about does. Also taking them as quickly as

you can helps to 'cos they don't dissolve on your tongue.

All my best wishes,

Lui age 21 LOndon UK

[Guest guest]

Hi Jan:

I was the one the nurse talked about weaning but she was going to

discuss this with the doctor first and get back to me. I know not

to stop taking it on my own. It makes me crazy to wean

anyway...yikes! I like having all of this energy but am nervous

about the side effects.

---

In , " Ian & Janet " <ianjanaust@x>

wrote:

> Im so fogged at the moment, but I think it was suzy who asked what

happens if you stop pred secretly from the doctor....well if youve

been on it a little while & you suddenly stop, you're in big trouble

and could collapse & die.

> Also elisbeth (I think)....I wouldnt let a nurse make decisions on

something that was so vital to my life as to come to the conclusion

that in her opinion you can now be weaned down off pred. From

experience and a right merry go round, unless you're put on an

immunosuppressant to carry on with the work of the pred. your LFTs

may very well sky rocket again and you could be back to square one &

put back on high doses of pred. Remember this is only my opinion &

experience. Take care.

> Love Jan

[Guest guest]

It's funny, of the side effects listed below, I only get the extra sweating

and maybe a little thrush, but I am getting teeth problems (sensitivity,

fillings falling out...), sleep disturbances and irritability. I'm on 20 mg/day

and

have only been on it for a little over a month. I hope more side effects

don't develop. I guess it differs for how much you're taking and how long

you're

on it.

Jen Behan

****************************

Side Effects of Prednisone

The most commonly encountered side effects are:

Sodium retention

Increased appetite

Increased fat deposits

Increased acid in your stomach

Increased sweating, especially at night

Increased hair growth

Acne on the face, back, and chest

Bone and muscle problems

Growth problems in children

Eye problems

Increased sugar in the blood

Increased sensitivity to the sun

Delayed wound healing

Decreased ability to fight infection

Thrush (Candida) growth in the mouth

[Guest guest]

Thanks for explaining that, I think I finally understand. I didnt have time to investigate anything that happens after transplant cause I got sick so fast. I'm just starting to now and this really helps. Do you happen to live in Michigan? Just wondering cause thats how the weather is here also.

Cece

transplant 8/17/03Ian & Janet <ianjanaust@...> wrote:

I was weaned down 5mg per month until 10mg then reduced by 1mg per month. Bloods were taken fortnightly. Also prednisone is given to tackle inflammation (usually in a hurry to prevent more liver damage). The metabolic function of the body is under the control of several glands whose internal secretions (or hormones) are released into the blood stream to act upon various tissues and organs. (adrenal, pancrea, pituitary). Principal aim in manufacturing corticosteroids has been to try and separate the anti inflammatory effects from their metabolic effects on sugar, protein salts & water. Metabolic effects occur only slightly with pred except taken in big doses and longterm....as we all know about. Once inflammation is under control, immuran, 6mp, or other immunosuppressants are introduced to 'treat' autoimmune diseases....hashimoto, lupus, aih, transplants. The reason is the production of antibodies and the cells involved in the

immune system are dependent upon the production and multiplication of lymphocytes.....so any drug that interferes the this production or multiplication of lymphocytes will suppress the immune system....and hopefully prevent our liver being attacked again which in turn causes inflammation.

Sorry everyone about this diatribe....its a pretty boring day for me....wet, windy, dark and cold!

love Jan

[Guest guest]

> My rheumy gave me an Rx for a 15 day course of Prednisone (a " burst " )

> because of the tendinitis in my hand. I've never had Pred. before. She

> said, " You're going to feel great! " After two days, I mostly feel a bit

> groggy from it. Does it take a little while for the " great " to happen?

> I was looking forward to that.

I never did get to the " great " or " just how you used to feel! " part.

I only got to the " it must work because I feel horrible when I go off

it " part...

Hope you get to " great " soon, tho