prednisone

[Guest guest]

I've had it my entire life - comes and goes - can cover one's whole tongue -

may have something to do with stress, what you eat? Or maybe not? Fairly

common. Looks like little patches on your tongue. Quite interesting

actually - I've formed new continents, watched them drift apart, created

rivers..... LOL

Mark

Re: rheumatic Prednisone

>

>

> > From: " L. " <eljohnson@...>

> >

> > Lisbeth,

> >

> > I'd like to know what causes Geographic tongue too. Is yours just on

> > one side. Mine's just been doing the right side. My twin sister has RA

> > and she has it. I just figure its a sign something's still going on.

>

>

[Guest guest]

Lisbeth,

I think I am pretty ignorant about long term life with prednisone. I

thought it was taking a long time to get off it but it sounds fast to

you. I know that there are a lot in this group that have struggled for

many many years, to whom my 2 years is a mere drop in the bucket. I

think what really wiped me out was the high dose and the cytoxan

combined. And the fact that we found the solution relatively soon made

the recovery faster. I am wondering how someone like (arjay) who

never had the other stuff is doing.

Toni

Lisbeth wrote:

>

> From: " Lisbeth " <lisbeth@...>

>

> Hi toni,

>

> Interesting to see Joanie's response regarding the tongue issue, food for

> thought.

>

> My 'geographics' come and go, so I'm not sure how that would 'fit?'

> When I do have it it's all over my tongue not just on one side like yours

> toni. I have a reasonably good diet (except when I cheat and I'm not

> confessing to how often that is!!) but my immune system is shot!!

>

> You reduced pretty quickly with your steroids toni that was good. I'm so

> pleased your legs are better, I can just see you running up those

> stairs.......great sight! Marathon next year?!! <grin>

>

> Even after 30+ years on steroids my bone density is quite reasonble.

>

> Good luck with yours!

>

> hugs,

---

[Guest guest]

Hi All

I saw my name and just had to respond esp since I am doing so very

well. I did well all summer then started to feel achy in November Liz

suggested a seasonal flare I increased my minocin to 100mg bid daily and

stopped the cleocin now I'm doing great again. I'm completely off

NSAIDs and have no swelling, pain or stiffness. I had been on minocin

MWF with cleocin Tuesday, but when I started to backslide I remembered

Dr Chui said he used the daily dose. I also seem to have more energy

since I upped my dose. I think it's been about a month, I plan to stay

on this dose until spring when I'll have new labs and hopefully my RF

will be down. Then maybe I can officially declare remission.

" L. " wrote:

>

> From: " L. " <eljohnson@...>

>

> Lisbeth,

> I think I am pretty ignorant about long term life with prednisone. I

> thought it was taking a long time to get off it but it sounds fast to

> you. I know that there are a lot in this group that have struggled for

> many many years, to whom my 2 years is a mere drop in the bucket. I

> think what really wiped me out was the high dose and the cytoxan

> combined. And the fact that we found the solution relatively soon made

> the recovery faster. I am wondering how someone like (arjay) who

> never had the other stuff is doing.

> Toni

>

> Lisbeth wrote:

> >

> > From: " Lisbeth " <lisbeth@...>

> >

> > Hi toni,

> >

> > Interesting to see Joanie's response regarding the tongue issue, food for

> > thought.

> >

> > My 'geographics' come and go, so I'm not sure how that would 'fit?'

> > When I do have it it's all over my tongue not just on one side like yours

> > toni. I have a reasonably good diet (except when I cheat and I'm not

> > confessing to how often that is!!) but my immune system is shot!!

> >

> > You reduced pretty quickly with your steroids toni that was good. I'm so

> > pleased your legs are better, I can just see you running up those

> > stairs.......great sight! Marathon next year?!! <grin>

> >

> > Even after 30+ years on steroids my bone density is quite reasonble.

> >

> > Good luck with yours!

> >

> > hugs,

> ---

>

>

[Guest guest]

I also have a strange tongue problem. IT was my first symptom and still is

there from time to time. Sometimes I have flat red patches on my tongue,

but mainly it just tingles like a nerve on one side is damaged. It does

clear up when I am really rested. Since I have it, I would assume it is

related to the mycoplasma infection which I know I have.

a Carnes

> From: " L. " <eljohnson@...>

>

> Lisbeth,

>

> I'd like to know what causes Geographic tongue too. Is yours just on

> one side. Mine's just been doing the right side. My twin sister has RA

> and she has it. I just figure its a sign something's still going on.

> Its really a minor thing. On the prednisone reduction, once I got to

> about 7 mg I would gradually over one week go down just 1/2 then stay

> there one week then take a week to go down another 1/2 and stay there

> one week. It seemed to take forever but I finally got there. Once I

> got to about 10mg I was able to sleep again! It was wonderful! I

> understand prednisone has its place, but I was having some horrible side

> effects from it and I was on way too much. My legs were losing their

> strength and were sooo skinny. A year ago I could hardly go up stairs.

> Now I'm running up them! I only hope I didn't have too much bone loss.

> I'm going to have a bone density test in a couple of weeks.

> Thanks for the good advice.

> Toni

>

[Guest guest]

Are the patches red or white? Do you have any sensitivity like burning or

tingling from this?

a CArnes

\

> From: MHOLMES@... (HOLMES, MARK T.)

>

> I've had it my entire life - comes and goes - can cover one's whole

tongue -

> may have something to do with stress, what you eat? Or maybe not? Fairly

> common. Looks like little patches on your tongue. Quite interesting

> actually - I've formed new continents, watched them drift apart, created

> rivers..... LOL

>

> Mark

>

> Re: rheumatic Prednisone

> >

> >

> > > From: " L. " <eljohnson@...>

> > >

> > > Lisbeth,

> > >

> > > I'd like to know what causes Geographic tongue too. Is yours just on

> > > one side. Mine's just been doing the right side. My twin sister has

RA

> > > and she has it. I just figure its a sign something's still going on.

> >

> >

>

>

[Guest guest]

Mickey..boy, have I! They come suddenly and you feel your face flush and if

it the least bit hot in the room where you are you sweat profusely...then it

is gone as suddenly as it came on.

Last summer was horrible for me because of the Prednisone hot flashes...I was

embarassed to even go to a store.

Sorry you are going through this..I know how bad it can get.

I can tell you that after I reduced my dose to 10mgs a day it was not as

bad...but still evident.

Good Luck,

Annette

[Guest guest]

Hi Mickey,

About 6 months ago I started having hot flashes. I've had a

hysterectomy and take hormones, but I wasn't on Prednisone at the time

the hot flashes started. My gynecologist just recently increased my

hormones, but I have also started taking Prednisone again because of the

pain that I've been in. Even with my hormone dosage increased, my hot

flashes have become worse, but I don't think it's because of the

Prednisone. I used to take Prednisone over a year ago, but didn't have

hot flashes then. I agree with . I think the hot flashes are

caused by the disease itself.

Vicki

mick@... wrote:

[Guest guest]

she put me on

> the predisone. It has helped me ALOT!!!!!! I can actually walk now.

> Well not too good but I can get around ... I have learned to take it

> day by day. Some days are better than others. I go back to the doctor

> on the 22 nd. I have to start decreaseing my doses this week....

Hi,

I have been taking pred for about a month with similar results.. feel OK

which is better) on most days. This weekend wasn';t the best, but both days

I slept in til 11:30 AM, which put me 4 1/2 hrs behind on the meds, so I

blame it on that.. anyway.. my question is.. you say you have to start

decreasing this week. What dose have you been on? I am taking 7.5 mg daily

and have not been told to decrease or how long I'm suppose to take it or

whatever. I wondered if anyone else has taken it for a long time. She gave

me enough refills for a year. not sure if this means she intends to keep me

on it that long or what. I expect I'll need an increase from what I'm taking

as I can't seem to get adequate pain releif when I try to get the codeine

contin down ( I take 150 mg twice a day). And would like to get off it. So,

I think maybe the pred dose isn't enough.

[Guest guest]

,

I have been on Prednisone daily for over 2 years. I have been taking from

5-30mg depending on how I'm doing presently 15 mg. I also take Fosamax and

watch calcium so I don't shrink with osteoporosis (I've been tested). I take

25 mg of MTX and haven't been successful with much else due to the asthma and

drug allergies. I can't take NSAIDS so pain relief and inflammation is a

problem. I have gotten fat, moon faced, and bald from the Prednisone, rather

that than no relief at all.

Ilene

[Guest guest]

My rhuemy said 5mg or less we don't see the horrific side effects. M.

[Guest guest]

Gloria,

My only personal experience has been short-term use, and it has really

helped to rein in the pain. I would feel fairly confident that low dose

usage for quite some time will not do you any more harm than the unchecked

inflammation, probably a whole lot less.

I wouldn't feel badly about needing it for a while, just be careful about

staying on it for the long haul. I believe Dr. Brown used around 5 mg, but

others will have a better answer on dosage.

Jean

> Hi,

> Someone said that low doses of prednisone wouldn't do much or any

> damage over time.Do you think that is true, and, if so, what would be a

> low dose...two, five, ten mg? It is beginning to look good to me to help

> me get through this pain period. I don't know if I am having a herx, and

> I am hoping the biaxin will work soon, but meanwhile...

> love,

> Gloria

> ________________________________________________________________

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>

>

[Guest guest]

My opinion is if your real bad off go with 10mg pred for a couple weeks then

drop 1or 2 mg a week till your off it. Should cause you no harm especially if

your taking care of yourself with proper nutrition.

Gloria M Tate wrote:

> Hi,

> Someone said that low doses of prednisone wouldn't do much or any

> damage over time.Do you think that is true, and, if so, what would be a

> low dose...two, five, ten mg? It is beginning to look good to me to help

> me get through this pain period. I don't know if I am having a herx, and

> I am hoping the biaxin will work soon, but meanwhile...

> love,

> Gloria

> ________________________________________________________________

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[Guest guest]

Hi , You are right about the pred at low doses. I swore off of it

years ago after gaining all of the side effects of massive doses and said at

the time that I would never go back on it again. But early this year my

hands and shoulders hurt so bad that I did go back to 5 mg. a day for

awhile. Dr. Brown did this also. My Dr. stated that if you stay at 5 mg.

or less it does not suppress the immune system like the heavier doses does.

I did not even have to wean off of the 5 mg. Just stopped taking it once

the inflammation was down.

Skippy

rheumatic prednisone

> I guess I sounded like an advocate of prednisone in my last post( which I

> am not as I know it is not completely without side effects) but when you

> are suffering as poor Gloria is you have to weigh the lesser of the two

evils.

>

> Just remember the calcium and the vit D!

>

>

>

>

>

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

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>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

Dear Janet,

I had bad pain in my knees when I first tried to drop from 10 to 5 mgs of

pred.

I tried again three days later with very little increase in pain and am now

without

knee pain on 5 mgs. I have now been on 5 mgs for 4 days. See what happens if

you try again every two or three days.

Ann

[Guest guest]

what form calcium? I've been on prednisone <= 10mg 10 years. Yes, some damage

from it but also RA.

> I guess I sounded like an advocate of prednisone in my last post( which I

> am not as I know it is not completely without side effects) but when you

> are suffering as poor Gloria is you have to weigh the lesser of the two

> evils.

>

> Just remember the calcium and the vit D!

>

>

>

[Guest guest]

My rhemy said to wean off 1 mg per week. It worked for me. But the real

issue may be the severity of your disease, not the dose you are on.

M

[Guest guest]

Gloria,

I was on 10 mgs of prednisone for a month and initially also had trouble

cutting

it in half. I tried twice again over the next week, and the third time there

was

very little increased pain in my knees. Then I went to 2 1/2 for two days

and stopped it altogether because I didn't want to be on it when I had a

tooth extracted. This was four days ago and I'm not having any trouble with

the knees.

The old hands and feet pain that went away with the minocycline has not

returned yet either. So for now I'm on no drugs of any kind whatsoever. I

am glad that

I didn't fill the prescription for methotrexate that the doctor ordered when

the knees were so bad. I still plan to go on doxycycline, with or without

the doctor's

cooperation. I may also add zithromycin twice a week. I will see the

rheumotologist in June and see if he wants to prescribe doxy when he finds out

that I didn't take the methotrexate and I'm not having pain.

Anyway, I do think prednisone can intensify symptoms when you first try to get

off it, but persisting seems to give your body the message that it needs to

produce its own cortisone, and it begins to get easier with a second or third

try.

Ann

[Guest guest]

Dear Gloria:

I meant to write last week, but you know how it goes I bet. I got pleurisy

Feb l4th. Was given Pred in a downhill progression for 7 days. Felt much

better. Then all came back, they tapped my lft lung and put me on 20mg of

Pred and I stayed on it for one month. Then started to lower it by 5mg every

two weeks. By the time I was down to 5mg I cut tha pill in half again to

2l/2 and stayed there for anolther l0 days then quit it. After two days

without Pred I was a complete cripple unable to hardly walk, so I went back

to 5mg even tho the drs said l0mg. After each successive down of 5mg my legs

would cramp and complain so I figured it might be a problem to get completely

off. Well after two weeks on 5mg I wish to lower it againm to 2l/2, however

my courage is not what it once was. So I say again in a warning. Keep away

from Prednisone. LOL Janet-Montana

Gloria M Tate wrote:

> Hi,

> Someone said that low doses of prednisone wouldn't do much or any

> damage over time.Do you think that is true, and, if so, what would be a

> low dose...two, five, ten mg? It is beginning to look good to me to help

> me get through this pain period. I don't know if I am having a herx, and

> I am hoping the biaxin will work soon, but meanwhile...

> love,

> Gloria

> ________________________________________________________________

> YOU'RE PAYING TOO MUCH FOR THE INTERNET!

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> Try it today - there's no risk! For your FREE software, visit:

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[Guest guest]

Hi all,

I've been reading the posts for the last couple of weeks about prednisone and

it's

just, well, depressing. I am on 7.5 mg of prednisone (and 400mg Celebrex) and

just cannot function without it. The agony before prednisone was unbearable. Yet

I am just terrified about joint damage. I still have swelling but I just do not

want to

increase the pred any more. And after reading all the stories about the trouble

that

people have getting off of it....

I just don't know what to do! Should I start on a DMARD because they may be less

damaging? My doctor is a GP and I know more about this disease than she does so

I don't expect to get good advice there. Sigh...

What does everyone do when they herx? Do you increase meds? (ie., NSAIDS, pred,

whatever) I have made it through one without needing to increase the meds much

(upped

the pred to 10mg on one day) but it worries me.

Ethel, did you say you had a *14 month* herx? What did you do? How did you

handle

it? Did you have increased swelling too? What did Dr. Brown say? I just worry so

much

about the worsening during a herx, it seems like it must do damage! And then I

wonder

if it's a herx or if my disease is getting worse!

I've been on the AP since early March and see no improvement (I didn't expect to

see

anything yet, but I'm just amazed how some people do see improvement so soon).

TIA,

[Guest guest]

THIS IS A POST FROM ANOTHER GROUP THAT I MODERATE...LivingWithLupus.

~LISA

After some searching, I found a few remarks from sufferers at

Lupus.org. They said these things:

A FEW COMMENTS FROM THE FORUM AT LUPUS.ORG:

Prednisone is not usually given in mild Lupus cases, or if it is,

it's short/low-dose. It is not a simple anti- inflammatory, it

affects the adrenal system, and is a disease modifiying medication.

I definitely think that your decrease in appetite is due to your

cessation of prednisone. As you probably know, steroids such as this

tend to make you remarkably ravenous!

Prednisone has literally saved many lives.There is no reputable

account of anti -oxidants having any effect on the malfunction of the

Immune System that is responsible for auto- immune disease. The

reduction of inflammation results in the reduction of the likelihood

of immune complexes settling in the organs and damaging the tissues.

As kidney disease remains the potential " killer " , and is often not

felt until advanced the importance of thorough early detection

remains. Nor will these substances help with anti-cardiolipin anti-

bodies which affect 30%-50% of those with lupus and can be

responsible for major damage in any body organ

I had to be on a high dose (60mg) of Prednisone for about 6 months. I

have gained a massive amount of weight etc. but I know that the

Predisone also saved me and helped me get better.

I really think that Lupus or any other disease should be treated with

Common Sense. That includes the best of all types of treatments,

along with a healthy lifestyle so that we can all get well and stay

that way.

I have taken varying doses of prednisone since they were prescribed

nearly two years ago by my doctor, and although I know the awful side

effects that can result, that drug (among others) has kept me going,

in fairly good health. I take calcium daily along with other

supplements, and have regular checkups of bone density, etc. We've

now tapered the dosage from a high of 40 mg down to the present 5 mg

dose, and hoping to go to zero. But if I need it, I'll continue to

take it as prescribed by my doctor, who has my complete trust.

In the past 5-6 years there have been a number of good books written

on the topic of lupus. The LFA Patient Education Committee reviews

lupus and lupus related publications and approves those which it

deems worthy of the LFA Patient Education seal of approval. Newly

approved books are announced in the LFA's national newsletter, Lupus

News. There are many materials approved by LFA. Some are available

for sale in the " About LFA " section of this web site at:

http://www.lupus.org/info/about/index.html

Here you can find information on approved publications available from

the LFA, including the books " Coping with Lupus, " " Lupus: Everything

You Need to Know " and " The Lupus Book " to name a few. A publications

order form is available for you to print out and mail in with your

order.

We encourage you to also check with your local chapter of the LFA to

learn which books they stock and sell. Many do offer " The Challenges

of Lupus " by Henrietta Aladjem which is approved by the Patient

Education Committee. Profits from the sale of books by LFA and its

Chapters help to support the services and programs offered by the

Lupus Foundation of America, including this web site.

To locate a chapter near you, go to the " Chapters " section of this

web site at:

http://www.lupus.org/info/help.html

Accessing reliable information is often the first step toward

successfully coping with any illness.

I'm 28 and was diagnosed 3 yrs ago. I also just had a kidney biopsy

for the 1st time. I get the results on Wed. I know you're scared

because the 1st time I took pred, (which was right after I was 1st

diagnosed), I was terrified. I'm really into natural things too, and

back then I wouldn't even take aspirin, so I understand your

apprehension, but I can now honestly say that it was a miracle for

me, and it did save my life. (And it still does). I also don't want

to do the chemotherapy. My protein levels went down when I was at the

hospital, just from the 1st IV I got, so I'm hoping maybe I won't

even need the chemo, but if I do, I'm definitely going to do it,

because I know it will save my life. I'll do it in addition to the

meditation, visualizations, hypnosis, Tai Chi, etc that I already

do.I hope this helps you a little bit. I wish I had something else to

say. If you'd like to email me privately, I'd love to talk to you

about prednisone, or anything else. Let me know if you find out about

any good alternative treatments, too, OK? Thanks and good luck with

everything. LISA (behappy20000@y...)

I am going to go with the majority here too. You can't risk your

kidney's. I have been on up to 100 mg of prednisone daily, I have had

21 Cytoxan treatments, my hair fell out three times. I know it sounds

horrible, but you just go day to day and you get through it. I was

only ever nauseated once, and they switched me from Zofran to

Compazine. I drove myself to and from the chemo by myself, and aside

from being tired, life went on as normal. It really isn't as scary as

it first seems. But definately take the Dr's advice. You can try

natural things later when your lupus is a little quieter.

having just been weaned off 80mg per day of prednisone, I would only

take it as a last resort. My body reacts strangely to medications and

I had a very difficlut time weaning Ask your doc lots of questions

including his goals and procedures for your dosages of predinsone.

I am now in medicated remission and my only symptom is a kind of

fatigue/weariness when I overdue it. What I hate most about lupus is

how disfiguring it can be. I expected the weight gain and I'm

grateful it did not happen - but - if I get as sick as I was and have

to go back on a higher dose there is a chance the prednisone will

effect me differently and I will gain weight. I try to keep

optimistic.

Dr.Wallaces book is very good and speaks in plain english which

helped me and may help your wife to understand..I look fine also, as

do a lot of people..this is a hidden disease..my cousin ( a male) has

had lupus for 20 years,(is now 46) and also looks fine inspite of

being in and out of the hospital a few times over the years..He had

to quite his construction job because of the sun and went into real

estate.He applied for SSI and after time 3, got it.(most posts about

SSI say it takes 3 times..) All that matters is,if your wife is

willing to stand by you and learn about this disease, you can rebuild

your life together..My cousin has a caring wife,and now has 7

children and they rebuilt everything..He was and is a very hard

worker and I think he caught alot of grief too..Once you make up your

mind to take control back of your life, the picture becomes clearer..

Mick

--- End forwarded message ---

[Guest guest]

I think Im going with what I know of prednisone and how harmful my

doctor feels it is.

I have heard horror stories and have had personal friends who have

suffered eventually from prednisone long term use

Your fortunate for now and Im glad you have not suffered with it but it

is a personal choice.

If you wish I would be glad to Email you the dangers of it.

June

[Guest guest]

In a message dated 08/15/2000 9:01:18 AM Pacific Daylight Time,

I_shin_den_shin@... writes:

<< THIS IS A POST FROM ANOTHER GROUP THAT I MODERATE...LivingWithLupus. >>

Wow that makes me want to grab those people up and hug them and give them

antibiotics. I get so sad when I see a group of people treating them selves

with such toxins when the antibiotics work ever so much better. Thanks for

sharing.

[Guest guest]

Carol,

Licorace root and borage tincture may help--the borage helped me, I'm still

at 8mg and know how hard it is! Takes me about 6 mons / mg.

l

<< Can't wait to get the dose of pred. down. It has wrecked havoc on me.

(weight gain, hormones, osteoporosis, and blood sugar).

I would love any suggestions.

Thanks,

Carol

>>

[Guest guest]

I use ginger caps, Essential Fatty Acids (Flax Seed Oil/Evening Primrose

Oil), and Pantothenic Acid myself..they seem to help a bit...I am still on

7.5 a day myself....been on it for a year and a half now...I've gained a

little over 20 pounds... ...hopefully I'll be able to get off the Pred

before TOO much longer but I know I need it right now....if I miss it for a

day or two I can really tell....

Blessings and Health

Tony

In a message dated 8/29/00 7:24:06 PM Pacific Standard Time, Sjlane99@...

writes:

<< Subj: Re: rheumatic Prednisone

Date: 8/29/00 7:24:06 PM Pacific Standard Time

From: Sjlane99@...

SurfcityCL@..., rheumaticegroups

Carol,

Licorace root and borage tincture may help--the borage helped me, I'm still

at 8mg and know how hard it is! Takes me about 6 mons / mg.

l

<< Can't wait to get the dose of pred. down. It has wrecked havoc on me.

(weight gain, hormones, osteoporosis, and blood sugar).

I would love any suggestions.

Thanks,

Carol

>>

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Date: Tue, 29 Aug 2000 23:21:21 EDT

Subject: Re: rheumatic Prednisone

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>>

[Guest guest]

Believe me it will get better!!!!!!! LOL Lori C.

[ ] Prednisone

>Hi all, This is ne in Georgia. (your friendly lurker!!) I have a

>question. I have been on Prednisone since 1986, am currently on 25 mgm/day.

>My new doc is planning to put me on Imuran & wean me off the Prednisone.

>My question is this. I look like a hump-backed basketball with hair. LOL

>Will the cushings & hump go away, or at least get better. I have covered

all

>of my mirrors with black crepe!!! LOL

>ne-AIH-Georgia

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