prednisone

[Guest guest]

Holly has weaned of pred too. so far so good, its been almost 2 weeks :-)

n

[Guest guest]

Wow SueB. such a difference in doses for people. I've been told by so many

people that 10mg was high. Gives me more perspective, thanks. Lynn

milko wrote:

> From: " milko " <milko@...>

>

> Lyn,

> My personal high dose for pred. was 60mg twice a day at the very beginning.

> SueB.

>

> ----------

> > From: Lynn <CEN32195@...>

> > onelist

> > Subject: Re: [ ] Essential Fats

> > Date: Monday, 12 July 1999 11:49

> >

> > From: Lynn <CEN32195@...>

> >

> > I am new, could you please tell me what a high dose is considered to be

> for

> > prednisone? Thanks, Lynn

> >

> > milko wrote:

> >

> > > From: " milko " <milko@...>

> > >

> > > ,

> > > You may not have the same problems as Geri and indeed I have

> experienced

> > > with the withdrawal from pred. How long have you been on pred. I think

> that

> > > has a lot to do with what withdrawal affects you experience.

> > > Me, personally, I have been on it at high doses for 18 months, my

> doctor

> > > says that is why the withdrawal is going so rough.

> > > I hope you have only been on high doses for a short while and suffer no

> > > affects.

> > > SueB.

> > >

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

> > > > From: emily simpson <esimpson7@...>

> > > > onelist

> > > > Subject: [ ] Essential Fats

> > > > Date: Sunday, 11 July 1999 6:16

> > > >

> > > > Dear Geri,

> > > >

> > > > I want to thank you for all your responses. First of all, I'm sorry

> that

> > >

> > > > many of your symptoms seem to be the meds. It's too bad that what is

> so

> > > > necessary to save our lives, can also cause so much discomfort (for

> lack

> > > of

> > > > a better word)! How is the pain in your mid-section? It sounds

> > > horrible!

> > > > My heart goes out to you.

> > > >

> > > > In regards to the withdrawal from the prednisone, I think I'll be

> taking

> > > it

> > > > down 5 mg a week. I've been on it for about a month now, and have

> > > reduced

> > > > it 5mg (now at 35mg). I guess we'll see how it goes. I can see

> maybe

> > > > getting hives like you did, because my body has always broken out in

> > > hives

> > > > when it didn't like something (ie. first time I tried smoking,

> allergies

> > > > etc). The joint and muscle pain stuff is no fun either. I guess

> I'll

> > > just

> > > > wait and see what happens. It's crazy that those things can get

> worse,

> > > when

> > > > you're also told that side effects decrease with the level of pred.

> Ah

> > > > well. Live and learn...!!! I'm glad that your muscle and joint pain

> > > seems

> > > > to be decreasing. I hope it continues for you, and that 5mg's turns

> out

> > > to

> > > > be ideal!

> > > >

> > > > On the subject of your salmon dish, it sounds incredible!!! I found

> an

> > > > article for you on fats which are good for your body. It's

> interesting

> > > that

> > > > certain fats can also benefit certain Autoimmune disorders, and

> > > inflammatory

> > > > problems! I've attempted to add an attachment, but in case it

> doesn't

> > > work,

> > > > I'll type in the sight again. This site is an excellent resource for

> > > info

> > > > on all sorts of diet, food, and vitamin supplements. Have fun

> roaming!

> > > >

> > > >

> > >

> http://www.healthwell.com/delicious-online/D_Backs/Dec_97/nutadv.cfm?path=hw

>

> > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > > ______________________________________________________

> > > > Get Your Private, Free Email at http://www.hotmail.com

> > >

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

[Guest guest]

Gee Doc Franco - first methotrexate,now long term prednisone. Sounds awful

conventional to me! I suspect it has something to do with the fact that if

one wants to remain in good standing with the American College of

Rheumatology, one had better pull out the big guns now and then (geez, there

goes the cynic in me!). Quite a predicament for most docs today as they

wrestle with this disease and with those of us who are unlucky enough to

have a fast progressing version of this stuff.

Am sorry to hear of your predicament Shirley - I wish I could offer you some

wonderful advice. Is there some sort of pain killer that would help as you

tried to reduce the prednisone? I know you need to be careful coming off of

pred or you will be in a bigger mess, so please be careful!

My lower back has been stiff and somewhat painful for about 6 weeks now so

it does make me wonder. I'm not on prednisone, but that doesn't mean that

my lower back can't be going to hell. And after hearing your story, I don't

think I will be inclined to get on prednisone either!

Mark

http://members.tripod.com/~Mark_Holmes

RA 4/98 AP 7/98

Minocycline (Lederle generic) 100mg 2x/day MWF;Zithromax 250mg T,Sa;

Celebrex 200mg 2x/day;Zone Diet;Olive Leaf;Slippery Elm;Fish Oil(9

caps/day);Milk Thistle;bromelain;circumin;glucosamine;Exercise - 2-3 mile

walks-5 days/week

RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html

ICQ 18123139

rheumatic prednisone

> From: SHIRLEYHI@...

>

> Hi everyone: this info is for all of you who are taking prednisone

long-term.

> Because of my RA, and because Dr. Franco prescribed it, I have been on

> prednisone for six years. I developed severe back pain two years ago, and

was

> supposed to have surgery last month on my lower back. Doctor cancelled at

> last minute because I was still on prednisone. He said prednisone raises

> chances of infection after surgery and it's too risky. Yesterday I saw a

> neurosurgeon, he said my back X-rays show that my spine is " not stable " .

He

> said the prednisone undoubtedly caused this, because it makes the bones

soft

> and porous. He said I need to be off the prednisone several months before

> surgery would be advisable, in order to give the bones a chance to

improve.

> He said it is messy and dangerous to operate on " soft " bones. I am

currently

> trying to wean myself off the prednisone, now down to 4 mg. But I am in

> terrible constant pain from the low back. If I had realized the drug could

> damage my spine this badly, I would have gotten off it long ago. Every

time

> I've had a flareup I upped my dose of prednisone, so have been on a yo-yo

of

> dosages. Just a warning to the rest of you, BE CAREFUL! I don't blame Dr.

> Franco for letting me stay on it this long, but I do wish he had tried

harder

> to get me off. Shirley Hillard

>

[Guest guest]

In article <a6c82fa.24ddc762@...>, SHIRLEYHI@... writes

>neurosurgeon, he said my back X-rays show that my spine is " not stable " . He

>said the prednisone undoubtedly caused this, because it makes the bones soft

>and porous. He said I need to be off the prednisone several months before

>surgery would be advisable, in order to give the bones a chance to improve.

He is mistaken. Bone strength does not improve coming off prednisone.

It may however stop getting weaker.

>He said it is messy and dangerous to operate on " soft " bones. I am currently

>trying to wean myself off the prednisone, now down to 4 mg. But I am in

>terrible constant pain from the low back. If I had realized the drug could

>damage my spine this badly, I would have gotten off it long ago. Every time

>I've had a flareup I upped my dose of prednisone, so have been on a yo-yo of

>dosages. Just a warning to the rest of you, BE CAREFUL! I don't blame Dr.

>Franco for letting me stay on it this long, but I do wish he had tried harder

>to get me off. Shirley Hillard

You need to start some anti-osteoporosis treatment. Conventional

treatment includes bisphophonates, and vitamin D analogues.

-------

Regards, Dr Graham Chiu

Prospective Internet Observational Study in Arthritis

Home Page http://www.compkarori.com/arthritis/

Contribute at http://www.compkarori.com/arthritis/contrib.htm

Data Entry at http://www.compkarori.com/cgi-local/piosa.cgi

[Guest guest]

<<You need to start some anti-osteoporosis treatment. Conventional

treatment includes bisphophonates, and vitamin D analogues.>>

Could someone explain what these are?

[Guest guest]

Hi Folks:

Did you know that prednisone is the most powerful drug and the most

dangerous and I believe one of the cheapest. I was on pred. for too long

and I have finally made it - it has been one month now and I feel pretty

sore (hands and mainly wrists) but I will refuse to take prednisone again

unless I am dying and it is the only drug that could save me.

Hang in there, it will pass and you will feel better for it.

Good luck - Mado

Re: rheumatic prednisone

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

>

>Gee Doc Franco - first methotrexate,now long term prednisone. Sounds awful

>conventional to me! I suspect it has something to do with the fact that if

>one wants to remain in good standing with the American College of

>Rheumatology, one had better pull out the big guns now and then (geez,

there

>goes the cynic in me!). Quite a predicament for most docs today as they

>wrestle with this disease and with those of us who are unlucky enough to

>have a fast progressing version of this stuff.

>

>Am sorry to hear of your predicament Shirley - I wish I could offer you

some

>wonderful advice. Is there some sort of pain killer that would help as you

>tried to reduce the prednisone? I know you need to be careful coming off

of

>pred or you will be in a bigger mess, so please be careful!

>

>My lower back has been stiff and somewhat painful for about 6 weeks now so

>it does make me wonder. I'm not on prednisone, but that doesn't mean that

>my lower back can't be going to hell. And after hearing your story, I don't

>think I will be inclined to get on prednisone either!

>

>Mark

>http://members.tripod.com/~Mark_Holmes

>RA 4/98 AP 7/98

>Minocycline (Lederle generic) 100mg 2x/day MWF;Zithromax 250mg T,Sa;

>Celebrex 200mg 2x/day;Zone Diet;Olive Leaf;Slippery Elm;Fish Oil(9

>caps/day);Milk Thistle;bromelain;circumin;glucosamine;Exercise - 2-3 mile

>walks-5 days/week

>RA Chat - http://members.tripod.com/~Mark_Holmes/RA/ra.html

>ICQ 18123139

>

> rheumatic prednisone

>

>

>> From: SHIRLEYHI@...

>>

>> Hi everyone: this info is for all of you who are taking prednisone

>long-term.

>> Because of my RA, and because Dr. Franco prescribed it, I have been on

>> prednisone for six years. I developed severe back pain two years ago, and

>was

>> supposed to have surgery last month on my lower back. Doctor cancelled at

>> last minute because I was still on prednisone. He said prednisone raises

>> chances of infection after surgery and it's too risky. Yesterday I saw a

>> neurosurgeon, he said my back X-rays show that my spine is " not stable " .

>He

>> said the prednisone undoubtedly caused this, because it makes the bones

>soft

>> and porous. He said I need to be off the prednisone several months before

>> surgery would be advisable, in order to give the bones a chance to

>improve.

>> He said it is messy and dangerous to operate on " soft " bones. I am

>currently

>> trying to wean myself off the prednisone, now down to 4 mg. But I am in

>> terrible constant pain from the low back. If I had realized the drug

could

>> damage my spine this badly, I would have gotten off it long ago. Every

>time

>> I've had a flareup I upped my dose of prednisone, so have been on a yo-yo

>of

>> dosages. Just a warning to the rest of you, BE CAREFUL! I don't blame

Dr.

>> Franco for letting me stay on it this long, but I do wish he had tried

>harder

>> to get me off. Shirley Hillard

>>

>

>

>

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

[Guest guest]

SHIRLEYHI@... wrote:

>

> He said it is messy and dangerous to operate on " soft " bones. I am currently

> trying to wean myself off the prednisone, now down to 4 mg. But I am in

> terrible constant pain from the low back. If I had realized the drug could

Slip up to 5 and try to get the pain under control. Do some gentle

warm-water or on a warming pad exercises for the back. Take Bone Builder

(Ethical Nutrients - unsure of same item under Metagenics name) at

higher than lable doses to rebuild bone. Add-in ra spes perhaps as high

as 4 or 6/d and when improvement noted drop pred in 1/2 or 1/4 mg/day

drops. Stabilize at each level at least two weeks - stable means no

worsening. The make next drop. Try stretching out dosing regime of Pred.

If you usually take every 6 hrs, try going for 8, then 9, etc., as this

is yet another way of gradually reducing the overall level of pred. Take

supplements specifically pointed at building up, repairing and aiding

the adrenal gland.

Do NO lifting, bending from the waist, etc.

--

Geoff Crenshaw -----------------------

Captain Cook's Cruise Center ** Usual Disclaimers **

-----------------------

Religion: Man's attempt to discover God

Christianity: God's offer to save humankind

[Guest guest]

Vickie,

I take Prednisone whenever I have a flare. There have been times when

they've put me on a low dose of 10 - 20mg to get me through a tough time or

times when I'm on 60 - 80 mg tapering down, hoping to get past it. It just

depends on the severity of the flare. I will say that though it makes me

feel much better, the side effects of loss of memory, irritable, and extreme

hunger are bad. Also, it raises my blood sugars significantly. Sometimes my

ENT gives me Prednisone to help my antibiotics work better when I have a bad

sinus infection.

Amy

[Guest guest]

Thank you, all those who answered my letter about prednisone. I will take

your advise, Geoff, about how to wean off the drug. Can you suggest

supplements for building up the adrenal gland? Shirley

[Guest guest]

In a message dated 08/09/1999 9:08:24 AM Eastern Daylight Time,

AmyDeel@... writes:

<< , it raises my blood sugars significantly. >>

Amy..that is why my doctors are hesitant to give me the Pred. I have a

family history of diabetes and they don't want to " kick it in " . I am glad

someone else also knew of this correlation.

Annette

[Guest guest]

Amy,

Then do they taper you off it all together when you take the prednisone for

the flare up's? That's what I'm hoping. I'd like to be tapered off of it

and only use it for stubborn flares. It works great but I'm hoping to get

off of it. I signed up at a swim club today and went swimming for 2 hours.

Gosh that felt good. (G) It's been years since I've been in a pool and I

really enjoyed it.

Vicki

[Guest guest]

SHIRLEYHI@... wrote:

>

> Thank you, all those who answered my letter about prednisone. I will take

> your advise, Geoff, about how to wean off the drug. Can you suggest

> supplements for building up the adrenal gland? Shirley

There is one set specifically for this problem. I'll hunt through my

files & find it for you. May take a day or two. Remember -- you really

need to build up the bone. The MCHC (Bone Builder) will help with that.

Also a balanced Calcium-Magnesium formula from the same company, along

with a multi-vit.

The bone builder you'd want to use at double-label dose for 90 days then

back to label dose for 9 mo then you can probably drop it (1 yr

program). The Cal-Mag you may need to keep on longer. The multi-vit is a

stay with it as part of your daily routine forever sort of thing. As

always, drink copious amounts of water and consult a professional re:

calcium vs whatever drugs you're on.

I'll get the adrenal info & let you know.

--

Geoff Crenshaw -----------------------

Captain Cook's Cruise Center ** Usual Disclaimers **

-----------------------

Religion: Man's attempt to discover God

Christianity: God's offer to save humankind

[Guest guest]

Pages 91-93 of the Prescription for Nutritional Healing lists a lot on

adrenal disorders..it is just too much for me to retype for you here. I

bought my book at Sam's...but they were also selling in WalMart. Your local

library may even have a copy. Also, General Nutritional Centers have it.

If you don't want to buy the book, just take a pad and pencil and write down

the info that you need from it.

Nutrients listed included the following:

Vitamin B complex

Pantothenic acid.

Vitamin C

L-Tyrosine

Raw Adrenal

And about 13 other supplements.

Sorry, I just don't have time to copy it all down for you...so, try to find

the book in your area.

Delaine

SHIRLEYHI@... wrote:

> From: SHIRLEYHI@...

>

> Thank you, all those who answered my letter about prednisone. I will take

> your advise, Geoff, about how to wean off the drug. Can you suggest

> supplements for building up the adrenal gland? Shirley

>

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

[Guest guest]

thank you !!! you are a fount of information. I will get the bone builder

right away, but can you tell me what brand it is? Can I find it at a vitamin

store?

I've been reading your letters for many months, and am always amazed at the

breadth of your information and how willing you are to share it. Again, many,

many thanks. Shirley Hillard

[Guest guest]

So why do so many doctors push prednisone if the theory is new drugs = $??

Such as some of the latest arthritis meds... I'm just interested in some

opinions.

I want off it too!! Good job Mado!

L

In a message dated 99-08-08 15:26:39 EDT, you write:

<< Hi Folks:

Did you know that prednisone is the most powerful drug and the most

dangerous and I believe one of the cheapest. I was on pred. for too long

and I have finally made it - it has been one month now and I feel pretty

sore (hands and mainly wrists) but I will refuse to take prednisone again

unless I am dying and it is the only drug that could save me.

Hang in there, it will pass and you will feel better for it.

Good luck - Mado >>

[Guest guest]

In a message dated 8/8/99 2:06:52 AM Eastern Daylight Time,

denisej@... writes:

<< <<You need to start some anti-osteoporosis treatment. Conventional

treatment includes bisphophonates, and vitamin D analogues.>>

Could someone explain what these are?

>>

Hi ,

Bisphophonate is Fosamax and Vit D is just ole Vitamin D.

HTH, Anita

[Guest guest]

Also, remember that the book, " What Your Doctor May Not Tell You About

Menopause " , by Dr. Lee, is very encouraging about the use of natural

progesterone for the building of bones. We had discussions

about this not too long ago.

Lea

Geoff Crenshaw wrote:

> SHIRLEYHI@... wrote:

> >

> > Thank you, all those who answered my letter about prednisone. I will take

> > your advise, Geoff, about how to wean off the drug. Can you suggest

> > supplements for building up the adrenal gland? Shirley

>

> There is one set specifically for this problem. I'll hunt through my

> files & find it for you. May take a day or two. Remember -- you really

> need to build up the bone. The MCHC (Bone Builder) will help with that.

> Also a balanced Calcium-Magnesium formula from the same company, along

> with a multi-vit.

>

> The bone builder you'd want to use at double-label dose for 90 days then

> back to label dose for 9 mo then you can probably drop it (1 yr

> program). The Cal-Mag you may need to keep on longer. The multi-vit is a

> stay with it as part of your daily routine forever sort of thing. As

> always, drink copious amounts of water and consult a professional re:

> calcium vs whatever drugs you're on.

>

> I'll get the adrenal info & let you know.

>

> --

> Geoff Crenshaw -----------------------

> Captain Cook's Cruise Center ** Usual Disclaimers **

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

> Religion: Man's attempt to discover God

> Christianity: God's offer to save humankind

>

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

>

> Captain Cook's Cruise Center <geoff@...>

> Managing Partner

> Sales Administration

>

> Captain Cook's Cruise Center

> Managing Partner

<geoff@...>

> Sales Administration

> USA

Fax: 559-734-1420

>

Work: 559-636-8413

> Check out our web site and see why we're a Top 5% site, one of the Top 100

Travel Sites on the web, and why even our friends " Down Under " have honored us

as a Top Site Of Interest To New Zealanders.

> Additional Information:

> Last Name Crenshaw

> First Name Geoff

> Version 2.1

[Guest guest]

SHIRLEYHI@... wrote:

>

> thank you !!! you are a fount of information. I will get the bone builder

> right away, but can you tell me what brand it is? Can I find it at a vitamin

> store?

Bone Builder is a product of Ethical Nutrients. Ethical Nutrients

products are readily available at finer health food stores, through the

NEEDS catalogue and via http://www.vitaminshop.com online.

A note: these are horse pills, i.e., they're large, and you take 6/d at

label doses.

HTH

--

Geoff Crenshaw -----------------------

Captain Cook's Cruise Center ** Usual Disclaimers **

-----------------------

Religion: Man's attempt to discover God

Christianity: God's offer to save humankind

[Guest guest]

Hi Everyone:

Went to see my GP today and told him I had finished taking Pred and did not

want it ever again. He said that Pred had and is helping lots of people and

I should not " badmouth it " . He was more polite than that but that is what

he meant.

So I said, you can prescribe it to your patients but I do not want it unless

I am dying and it could save me - he just shook his head. We have been

together for 23 years so we are very honest with one and another and finally

I got a smile out of him and he said he still liked me.

Good old doc - he is so very special. So I left and blew him a kiss while

my husband just shook his head. A good laught one in a while is necessary.

Hugs.

Mado the crazy Canuck. P.S. I think I am loosing it!!!!!!!!!!!

Re: rheumatic prednisone

>From: Sjlane99@...

>

>So why do so many doctors push prednisone if the theory is new drugs = $??

>Such as some of the latest arthritis meds... I'm just interested in some

>opinions.

>

>I want off it too!! Good job Mado!

> L

>

>In a message dated 99-08-08 15:26:39 EDT, you write:

>

><< Hi Folks:

> Did you know that prednisone is the most powerful drug and the most

> dangerous and I believe one of the cheapest. I was on pred. for too long

> and I have finally made it - it has been one month now and I feel pretty

> sore (hands and mainly wrists) but I will refuse to take prednisone again

> unless I am dying and it is the only drug that could save me.

>

> Hang in there, it will pass and you will feel better for it.

>

> Good luck - Mado >>

>

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

[Guest guest]

Dear 'Chatt':

60 mg is a pretty high dosage, it is possible that she could tolerate it at a

lower dose.

Kathy (AIH)

Seattle area

[Guest guest]

Hi -

60 mgs. of Prednisone seems awfully high to me. Even when I was most sick,

I never took more than 40 mgs. and that was quickly reduced to 30 mgs.,

then 20 mgs. I hope she's discussed this with her doctor and asked about

going on a lesser amount for awhile. Smaller dosages have worked for even

the most sick in our group. However, there are so many variables involved

with AIH, maybe they had a reason for going for 60 mgs. My impression is

that the major medical centers usually start out with the minimum dosage

they think will be effective and then reduce it if there's a positive response.

I hope your Mom is okay. Has she been told if there's current inflammation

and cirrhosis?

Take care,

Geri

[Guest guest]

Hi Toni,

Gosh I'm pleased with myself, for once I looked at the signature instead of

the e-mail address so I won't call you as I normally would have done

<silly grin> Not that there's anything wrong with it's a good

Scandinavian name!

WHEEEEEEEEEEEEEH you're nearly there Toni, well done coming off the

steroids that's just great !! <big warm hug>

For those who are on steroids ............

Prednisone, the dreaded wonder drug <sigh>

There are several people in the group who at this point cannot be without

their steroids and I feel we need to reassure them that this is ok for them

*right now.*

In my case the steroids have contributed to weakening my tendons and

muscles which has of course in turn affected my mobility. Then there's

the unseen damage that occurs internally !!!<frown>

I guess we need to accept that steroids do have their place though, as Dr

Brown used them when he felt it was necessary.

To those of you who are concerned about the side effects of the drugs I

would suggest you consider Cortisol (Hydrocortisone) instead of Prednisone.

A book on the subject:

Safe Uses of Cortisol by McK.Jefferies, M.D.

Web site: http://www.med.virginia.edu/~wj2m/

The Cortisol book is listed on the supportbooks page too.

http://www.geocities.com/SoHo/Gallery/6412/books3.htm

I changed from Pred. to Cort. some time ago and though I was not very

cushingoid my cheeks went back to 'normal' again. The funny part about

that was that I had had that slight puffiness for soooooooooo long that I

thought it was 'normal' and was very surprised to see the change!! :-)) And

delighted I might add, I am a female after all...... and that is not an

invitation for the fellas to make a wise crack either!! <grin>

I cannot confirm what other side effects may be lessened as a result of

changing to this (as Dr Jefferies calls it) *normal* steroid. The key

factor with this is Physiological doses as compared to Pharmacological

doses.

Then the reducing process that's another tricky one......isn't life fun??!!

<grin>

I've had lots of experience with this one and I never seem to learn myself,

so goodness knows why I'm trying to give other people advice<wry grin>

I have a little formula that goes like this.....

Say you're on 10mgs...

Alternate the dose, 10mgs one day and 9 the next.

When you feel stable i.e. no escalation in pain, inflammation etc. then drop

to 9.

Stay on 9 till stable and then alternate again 9 one day 8 the next.

This can be done by 1/2 mg too just whatever works for you.

The key is S L O W L Y !!!!!

Your body needs time to adjust to the new dose and if you do it too quickly

you will just bomb out and have to go up to a higher dose to get things back

under control, so nothing is gained by doing so. It requires patience !!

Hmmm I should take notice of my own advice... she says having just bombed

out !!!!

LOL 'Geographic tongue' I LOVE this Toni, I have it too and that's the

perfect description for it ! Has anyone ever told you what causes it, I'd

like to know.

If your doctor is on e-mail he can get help from our doctors corner on the

web site.

Closing with a big happy smile on my face at the thought of you off the

Prednisone!!!

Great stuff Toni!!

hugs,

lisbeth

rheumatic Prednisone

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

>

>Hi,

>

>Carol was saying she had trouble getting off prednisone. I can sure

>relate. I had no real diagnosis, but it was " accepted " that I had some

>connective tissue disease--polymyositis, some form of scleroderma or

>some kind of vasculitis. I was given the prednisone for my lungs and

>then cytoxan(chemo) when the pred. didn't do the job, but then whenever

>I tried to reduce the pred. I had more fever or pain--I got sicker. In

>my case 20/20 hindsight--I had an infection. Tben because of all the

>immune suppressants--My former Rheumatologist was treating my disease

> " aggressively " --I got a secondary lung abcess. It was after I was

>treated for 3 months with levaquin, augmentin and clindymicin that I

>could finally decrease the prednisone. What a happy " accident " ! It was

>an answer to prayer, because nobody I was around knew what they were

>doing. Now, almost a year later, I am 3 days from being totally off the

>Prednisone! I can hardly contain my excitement! Carol mentioning the

>difficulty in getting off the prednisone brings it all back--I don't

>want to go there again and I really feel for anyone in that position. I

>was up to 80mg and 240mg when I was in the hospital almost 1 year ago.

>I've started 200mg minocycline MWF--about 2 months now to see if I can

>get rid of Raynaud's, geographic tongue and joint pain(which only

>started about a year ago the joint pain, that is). My family doctor is

>willing to help, but its all guess work for us about amounts and type of

>antibiotic--I chose the minocycline because thats what Dr. Brown used.

>Well, anyway, I'm way better than I was a year ago. Will Dr. Trentham

>talk to other doctors, if they call for advice? Lisbeth, I love your

>style. And everyone, thanks for sharing and caring. It is so helpfull

>to see the interchange, even if I don't say much myself.

>Thanks,

>Toni

>

>>

[Guest guest]

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

Lisbeth wrote:

>

> Hi Toni,

>

> Gosh I'm pleased with myself, for once I looked at the signature instead of

> the e-mail address so I won't call you as I normally would have done

> <silly grin> Not that there's anything wrong with it's a good

> Scandinavian name!

>

> WHEEEEEEEEEEEEEH you're nearly there Toni, well done coming off the

> steroids that's just great !! <big warm hug>

>

> For those who are on steroids ............

>

> Prednisone, the dreaded wonder drug <sigh>

>

> There are several people in the group who at this point cannot be without

> their steroids and I feel we need to reassure them that this is ok for them

> *right now.*

>

> In my case the steroids have contributed to weakening my tendons and

> muscles which has of course in turn affected my mobility. Then there's

> the unseen damage that occurs internally !!!<frown>

>

> I guess we need to accept that steroids do have their place though, as Dr

> Brown used them when he felt it was necessary.

>

> To those of you who are concerned about the side effects of the drugs I

> would suggest you consider Cortisol (Hydrocortisone) instead of Prednisone.

>

> A book on the subject:

> Safe Uses of Cortisol by McK.Jefferies, M.D.

> Web site: http://www.med.virginia.edu/~wj2m/

>

> The Cortisol book is listed on the supportbooks page too.

> http://www.geocities.com/SoHo/Gallery/6412/books3.htm

>

> I changed from Pred. to Cort. some time ago and though I was not very

> cushingoid my cheeks went back to 'normal' again. The funny part about

> that was that I had had that slight puffiness for soooooooooo long that I

> thought it was 'normal' and was very surprised to see the change!! :-)) And

> delighted I might add, I am a female after all...... and that is not an

> invitation for the fellas to make a wise crack either!! <grin>

>

> I cannot confirm what other side effects may be lessened as a result of

> changing to this (as Dr Jefferies calls it) *normal* steroid. The key

> factor with this is Physiological doses as compared to Pharmacological

> doses.

>

> Then the reducing process that's another tricky one......isn't life fun??!!

> <grin>

>

> I've had lots of experience with this one and I never seem to learn myself,

> so goodness knows why I'm trying to give other people advice<wry grin>

>

> I have a little formula that goes like this.....

>

> Say you're on 10mgs...

>

> Alternate the dose, 10mgs one day and 9 the next.

> When you feel stable i.e. no escalation in pain, inflammation etc. then drop

> to 9.

> Stay on 9 till stable and then alternate again 9 one day 8 the next.

>

> This can be done by 1/2 mg too just whatever works for you.

>

> The key is S L O W L Y !!!!!

>

> Your body needs time to adjust to the new dose and if you do it too quickly

> you will just bomb out and have to go up to a higher dose to get things back

> under control, so nothing is gained by doing so. It requires patience !!

>

> Hmmm I should take notice of my own advice... she says having just bombed

> out !!!!

>

> LOL 'Geographic tongue' I LOVE this Toni, I have it too and that's the

> perfect description for it ! Has anyone ever told you what causes it, I'd

> like to know.

>

> If your doctor is on e-mail he can get help from our doctors corner on the

> web site.

>

> Closing with a big happy smile on my face at the thought of you off the

> Prednisone!!!

> Great stuff Toni!!

>

> hugs,

> lisbeth

>

> -----Original Message-----

>

[Guest guest]

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,

lisbeth

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

>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]

Lisbeth, Tony,

Could I ask what is geographic tongue. I've never heard of this before.

:>)

Bev

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.