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Hi Patti:

I wanted to welcome you to our wonderful group of caring, kind, and

informative people.

I have RA so I can't answer any of your questions regarding Fibro., etc.

I hope you find some meds. that will help your back pain, and your

hands.

Wishing you pain free days ahead.

Hugs,

Barbara

>

> Good morning!

>

> I have lurked here on this group for awhile now. I worked over an

> hour away from home and had little time for myself but my job ended

> 1/30 so I now have more time to read and visit.

>

> I wanted to introduce myself. My name is Patty and I live in SC. I

> don't want to bore you with a lot of details but I was so interested

> in the posting of Rheumatic Fever, heart murmurs and RA. I had RF as

> a baby and have a heart murmur from it. I am now 47 years old and

> about 15 years ago I started having very bad back pain, just from

> time to time at that point. I saw doctors and they thought it was

> simply muscle pulls at that point. But it got worse and worse and

> started to happen more frequently. So now, I am at the point where I

> have very bad issues with my back and that has been my major health

> problem. I also have problems with my hands, which I was told was

> arthritis but also Fibromyalgia. So, I continue having issues with

> my back and I visit a pain clinic once a month, and a vascular

> specialist once a month. I have been working with the latter over a

> year now. He is the one who diagnosed me with Fibro and several

> issues with nerves. I TAKE Loratab, Plavix, Lyrica, etc. and I also

> see an integrative specialist for nutritional supplements to see if

> that will help. I have severe back pain when the weather is going to

> be bad and that is at this point, one of my biggest issues...nothing

> I take helps it. But my hands are getting worse and that is another

> issue. The issue of brain fog with the Fibro is a new problem and I

> would be interested if anyone else suffers from that, if you take

> anything for it, etc. Mine is starting to get o bad I write little

> notes to myself and can not remember where the notes are!

>

> So, having made a long story longer, I hope to learn from you all and

> see how you function with these issues. Thank you for reading and

> this group!

> Patty

>

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Thank you Barbara. I hope to learn a lot from this group.... I

stopped visiting my RA doc a few years ago...she decided she could do

no more for me and I suspect she didn't want to deal with my pain

level anymore. But I know I have RA and take meds for it so it is

just another one of my issues :)

> >

> > Good morning!

> >

> >

>

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Good morning Patty.  I am a fellow lurker who wishes I could send you my

chiropractor.  I am also a fellow chronic back pain sufferer, mine from

Rheumatoid Arthritis.  I just wanted to see if you have tried chiropractic and

how you felt about it.  Curious how everyone feels about it. All I know is it

works for me.  Or maybe a heatpad, a hot tub, hot shower.

I hope you feel better.

(musiclvr3237)

From: Patty <pattybraud@...>

Subject: [ ] Not New---lurked - intro

Date: Thursday, February 19, 2009, 10:04 AM

Good morning!

I have lurked here on this group for awhile now. I worked over an

hour away from home and had little time for myself but my job ended

1/30 so I now have more time to read and visit.

I wanted to introduce myself. My name is Patty and I live in SC. I

don't want to bore you with a lot of details but I was so interested

in the posting of Rheumatic Fever, heart murmurs and RA. I had RF as

a baby and have a heart murmur from it. I am now 47 years old and

about 15 years ago I started having very bad back pain, just from

time to time at that point. I saw doctors and they thought it was

simply muscle pulls at that point. But it got worse and worse and

started to happen more frequently. So now, I am at the point where I

have very bad issues with my back and that has been my major health

problem. I also have problems with my hands, which I was told was

arthritis but also Fibromyalgia. So, I continue having issues with

my back and I visit a pain clinic once a month, and a vascular

specialist once a month. I have been working with the latter over a

year now. He is the one who diagnosed me with Fibro and several

issues with nerves. I TAKE Loratab, Plavix, Lyrica, etc. and I also

see an integrative specialist for nutritional supplements to see if

that will help. I have severe back pain when the weather is going to

be bad and that is at this point, one of my biggest issues...nothing

I take helps it. But my hands are getting worse and that is another

issue. The issue of brain fog with the Fibro is a new problem and I

would be interested if anyone else suffers from that, if you take

anything for it, etc. Mine is starting to get o bad I write little

notes to myself and can not remember where the notes are!

So, having made a long story longer, I hope to learn from you all and

see how you function with these issues. Thank you for reading and

this group!

Patty

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Hi Patty:

Do you take Prednisone daily? I have been on it for 6 years now. I

have tried many times to get off it, but have not been successful doing

so.

I hate the extra pounds but it sure works good on my RA. I also take

daily Sulfasalazine, Placquenil, MTX injection, 1x a week, and 12 hours

after my injection, I take 2 Leucovorin pills. This combination works

well for me. It was a lot of trial and error, but finally this worked

for me.

I hope you will be pain free soon. Try to rest when you can. I had a

hard time learning to pace myself. That was hard for me to do, as I am

a do-er. I lie down every afternoon, and take a nap when needed.

Wishing you pain free days ahead.

Hugs,

Barbara

> > >

> > > Good morning!

> > >

>

> > >

> >

>

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Hi Patty - glad to see you no longer lurking. I have Fibromyalgia and

the brain fog is horrible at times. I take Neurontin (Gabapentin)

600mg, 2 tablets twice daily - I don't have insurance and it is

cheaper than Lyrica with less side effects. It helps with the Fibro

pain, but there just are some days that nothing helps the fibro fog.

Perhaps if you designate one place in your home for your " notes to

self " they might be easier to find. I do find that consistency helps

me alot. I don't think there are any easy answers with FM as so many

still think its not " real " . Let them walk a mile in our

shoes.....Doreen :)

>

> Good morning!

>

> I have lurked here on this group for awhile now. I worked over an

> hour away from home and had little time for myself but my job ended

> 1/30 so I now have more time to read and visit.

>

> I wanted to introduce myself. My name is Patty and I live in SC. I

> don't want to bore you with a lot of details but I was so

> interested in the posting of Rheumatic Fever, heart murmurs and

> RA. I had RF as a baby and have a heart murmur from it. I am now

> 47 years old and about 15 years ago I started having very bad back

> pain, just from time to time at that point. I saw doctors and they

> thought it was simply muscle pulls at that point. But it got worse

> and worse and started to happen more frequently. So now, I am at

> the point where I have very bad issues with my back and that has

> been my major health problem. I also have problems with my hands,

> which I was told was arthritis but also Fibromyalgia. So, I

> continue having issues with my back and I visit a pain clinic once

> a month, and a vascular specialist once a month. I have been

> working with the latter over a year now. He is the one who

> diagnosed me with Fibro and several issues with nerves. I TAKE

> Loratab, Plavix, Lyrica, etc. and I also see an integrative

> specialist for nutritional supplements to see if that will help. I

> have severe back pain when the weather is going to be bad and that

> is at this point, one of my biggest issues...nothing I take helps

> it. But my hands are getting worse and that is another issue. The

> issue of brain fog with the Fibro is a new problem and I would be

> interested if anyone else suffers from that, if you take anything

> for it, etc. Mine is starting to get o bad I write little notes to

> myself and can not remember where the notes are!

>

> So, having made a long story longer, I hope to learn from you all

> and see how you function with these issues. Thank you for reading

> and this group!

> Patty

>

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Thank you for writing.

No, I have nevered tried a Chiroprator but I wondered if anyone had

luck with them. I have heard good and bad stories about them.

According to my vascular spec. I suffer from several different

issues, nerve damage in my back from a previous fall, tendon and

ligament damage from the same, and according to him I also have some

sort of long term infection which he believes is what is causing me

the additioanl back pain. I do get comfort from a heating pad but it

sure doesn't help when I am up and moving about.

Never the less, I do appreciate you letting me hear fom you...nice to

meet you!

Patty

>

> From: Patty <pattybraud@...>

> Subject: [ ] Not New---lurked - intro

>

> Date: Thursday, February 19, 2009, 10:04 AM

>

>

>

>

>

>

> Good morning!

>

> I have lurked here on this group for awhile now. I worked over an

> hour away from home and had little time for myself but my job ended

> 1/30 so I now have more time to read and visit.

>

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Barbara,

No, I don't take Prednisone. I have taken the 7 day pack thing for

steroids in the past but never on a daily basis. It sounds like you

have a good " cocktail " going. I sure am glad it works for you!

Patty

>

>

> Hi Patty:

>

> Do you take Prednisone daily? I have been on it for 6 years now. I

> have tried many times to get off it, but have not been successful

doing

> so.

>

> I hate the extra pounds but it sure works good on my RA. I also

take

> daily Sulfasalazine, Placquenil, MTX injection, 1x a week, and 12

hours

> after my injection, I take 2 Leucovorin pills. This combination

works

> well for me. It was a lot of trial and error, but finally this

worked

> for me.

>

> I hope you will be pain free soon. Try to rest when you can. I

had a

> hard time learning to pace myself. That was hard for me to do, as

I am

> a do-er. I lie down every afternoon, and take a nap when needed.

>

> Wishing you pain free days ahead.

>

> Hugs,

>

> Barbara

>

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Doreen

I am so glad to hear from you!! Boy, you are not kidding about the

fog! I wish I could get my hubby to understand better how it affects

m. Wow, sometimes I don't knowif I am coming or going!

I have ever heard of Neurontin. Does it strictly work on brain fog

or other fibro symptoms as well?

Patty

> >

> >

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Hey Patty,

I go to (or try to go) to my chiropractor once a week. Like other medical

specialists, it can take awhile before you find one who suits you. I

dislike the ones who try to set you up on a schedule, say " Come see me 3

times a week for 5 weeks " and basically are milking your insurance. I tell

them right away in the interview I'm not going to be put on any sort of

'schedule' my busy life doesn't have time. If they don't like it, I leave.

I fired three before I found the one I like here. I'm also an LMT, so

chiropractic and massage seem to work together. With nerve issues, if you

could find a massage therapist who is a certified Neuromuscular Deep Tissue

Technician (NMDT), you might have been results than with a chiropractor.

These types of MTs are able to massage and move the nerves into a different

place. I went to one when I had horrible sciatica and he fixed the problem

in one session. I belong to several massage lists. Where do you live and

I can try to locate one for you.

G, LMT

PhD student not an MD student

www.theahealinggrounds.com

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Hi Patty:

I am glad my " cocktail " works so good for me. Has your Rheumy ever

suggested that you take Prednisone on a dail basis, not just an

occastional 7 day RX? It is truly a wonder drug for all who can take

it.

Wishing you pain free days ahead.

Hugs,

Barbara

> >

> >

> > Hi Patty:

> >

> > Do you take Prednisone daily? I have been on it for 6 years now. I

> > have tried many times to get off it, but have not been successful

> doing

> > so.

> >

> > I hate the extra pounds but it sure works good on my RA. I also

> take

> > daily Sulfasalazine, Placquenil, MTX injection, 1x a week, and 12

> hours

> > after my injection, I take 2 Leucovorin pills. This combination

> works

> > well for me. It was a lot of trial and error, but finally this

> worked

> > for me.

> >

> > I hope you will be pain free soon. Try to rest when you can. I

> had a

> > hard time learning to pace myself. That was hard for me to do, as

> I am

> > a do-er. I lie down every afternoon, and take a nap when needed.

> >

> > Wishing you pain free days ahead.

> >

> > Hugs,

> >

> > Barbara

> >

>

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Patty,

HI, I saw a chiropractor for years to help with migranes and it did

wonders. When I got dx w/ RA, my rheumy advised me not to see a

chropractor anymore. My chiropractor popped my fingers and wrists

too, so I think that was the reason why...I don't know if just

getting spine adjustments is OK, but I did feel better. I guess the

only way to see if it would work for you is to try.

> >

> > From: Patty <pattybraud@>

> > Subject: [ ] Not New---lurked - intro

> >

> > Date: Thursday, February 19, 2009, 10:04 AM

> >

> >

> >

> >

> >

> >

> > Good morning!

> >

> > I have lurked here on this group for awhile now. I worked over an

> > hour away from home and had little time for myself but my job

ended

> > 1/30 so I now have more time to read and visit.

> >

>

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Patty, I don't know if anything will really work on the fibro fog, but

if the pain is lessened, I find the fog isn't quite as bad. Its hard

to get our spouses to understand what we're going through. Check out

http://www.butyoudontlooksick.com/the_spoon_theory/ - maybe that might

help him to understand a little better. There are other good things on

that site as well. Pain is so subjective - you can't see it, measure

it or feel it (unless you are the one in pain) and so many people just

don't get it. I wish you all the best.....Doreen :)

>

> Doreen

>

> I am so glad to hear from you!! Boy, you are not kidding about the

> fog! I wish I could get my hubby to understand better how it

> affects m. Wow, sometimes I don't know if I am coming or going!

> I have ever heard of Neurontin. Does it strictly work on brain fog

> or other fibro symptoms as well?

> Patty

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,

Just an FYI....I found finger splints at CVS. They come in a kit, with a

little pad that you can put in hot hot water, or freeze. I use it on my right

index finger when necessary. It runs between $5.00 and $6.00.

Heidi in Mass.

In a message dated 2/21/2009 11:09:33 A.M. Eastern Standard Time,

musiclvr3237@... writes:

Patty and ,

I believe chiropractic care has helped me with my pain. I always feel so

much better after having my spine and neck adjusted. I can breathe better, and

can function better if only for a few hours or minutes. He doesn't touch my

hands or fingers, no one does.

I see my chiropractor usually four times a week. I am amazed at how out of

alignment my body becomes in just one day. I blame this on having Rheumatoid

Arthritis. I usually have at least two or more ribs turned, and my hips and

neck are usually rotated out of proportion. Sometimes I can feel my fingers

release and can bend them. I just don't think I could function without my

chiropractor.

I have way too long of a story when it comes to prescription drugs and

alternative pain remedies, but am currently going against my doctor's wishes

and

am only injecting Humira shots every two weeks. Have tried all the others and

just can't handle them. Still not sure about Arava for pain. Still

researching. Broke down and have taken it the last couple days.

Couldn't live without my heatpad either. I wish someone made mini heat pads

for the individual finger, or a battery pack attachable heat pad. :)

The article that posted by Deborah Pate, DC, DACBR, was really

interesting. I printed it off and will hopefully show it to my chiropractor on

Monday. The part about concerns me most is the cranial settling. My C1 and C2

is

usually the most painful everyday. When it is adjusted it does not feel as

swollen. Sometimes my chiropractor uses an activator... Sometimes my

chiropractor uses an activator...<WBR it helps. It's better to me than getting

electromagnetic shocks from my previous rheumatologist.

I don't know, I just try to do what works for me, and chiropractic, Humira,

my heatpad, hot tubs, and Aleve are my favorites so far.

I hope you have pain free days.

(musiclvr3237)

From: <_

(http://www.brainyquote.com/quotes/quotes/b/barackobam409128.html)

_man_u8@..._ (mailto:man_u8@...) _>

Subject: [ ] Re: Not New---lurked - intro

_ (http://www.brainyquote.com/quotes/quotes/b/barackobam409128.html)

_ @groRA-SUPP_ (mailto: )

Date: Friday, February 20, 2009, 4:53 PM

Patty,

HI, I saw a chiropractor for years to help with migranes and it did

wonders. When I got dx w/ RA, my rheumy advised me not to see a

chropractor anymore. My chiropractor popped my fingers and wrists

too, so I think that was the reason why...I don't know if just

getting spine adjustments is OK, but I did feel better. I guess the

only way to see if it would work for you is to try.

> >

> > From: Patty <pattybraud@ >

> > Subject: [ ] Not New---lurked - intro

> > @gro ups.com

> > Date: Thursday, February 19, 2009, 10:04 AM

> >

> >

> >

> >

> >

> >

> > Good morning!

> >

> > I have lur_ked here on this group for awhile now. I worked over an

> > hour away from home and had little time for myself but my job

ended

> > 1/30 so I now have more time to read and visit.

> >

>

[Non-text portions of this message have been removed]

_ (http://www.brainyquote.com/quotes/quotes/b/barackobam409128.html)

**************You can't always choose whom you love, but you can choose how

to find them. Start with AOL Personals.

(http://personals.aol.com/?ncid=emlcntuslove00000002)

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I'm sorry but I just can't let this go by and not comment. Barbara, I'm glad

that you are happy with your " coctail " choice and I know many here take

prednisone on a regular permanent basis but someone new needs to know the many

side effects of prednisone and they're not very good ones. If you are new to

the world of RA, etc, and wish to go down the prednisone road please take the

time to check out the many varied side effects first.

in PA

[ ] Re: Not New---lurked - intro

Hi Patty:

I am glad my " cocktail " works so good for me. Has your Rheumy ever

suggested that you take Prednisone on a dail basis, not just an

occastional 7 day RX? It is truly a wonder drug for all who can take

it.

Wishing you pain free days ahead.

Hugs,

Barbara

> >

> >

> > Hi Patty:

> >

> > Do you take Prednisone daily? I have been on it for 6 years now. I

> > have tried many times to get off it, but have not been successful

> doing

> > so.

> >

> > I hate the extra pounds but it sure works good on my RA. I also

> take

> > daily Sulfasalazine, Placquenil, MTX injection, 1x a week, and 12

> hours

> > after my injection, I take 2 Leucovorin pills. This combination

> works

> > well for me. It was a lot of trial and error, but finally this

> worked

> > for me.

> >

> > I hope you will be pain free soon. Try to rest when you can. I

> had a

> > hard time learning to pace myself. That was hard for me to do, as

> I am

> > a do-er. I lie down every afternoon, and take a nap when needed.

> >

> > Wishing you pain free days ahead.

> >

> > Hugs,

> >

> > Barbara

> >

>

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Patty and ,

I believe chiropractic care has helped me with my pain.  I always feel so much

better after having my spine and neck adjusted.  I can breathe better, and can

function better if only for a few hours or minutes.  He doesn't touch my hands

or fingers, no one does.

I see my chiropractor usually four times a week.  I am amazed at how out of

alignment my body becomes in just one day.  I blame this on having Rheumatoid

Arthritis.  I usually have at least two or more ribs turned, and my hips and

neck are usually rotated out of proportion.  Sometimes I can feel my fingers

release and can bend them.  I just don't think I could function without my

chiropractor.

I have way too long of a story when it comes to prescription drugs and

alternative pain remedies, but am currently going against my doctor's wishes and

am only injecting Humira shots every two weeks.  Have tried all the others and

just can't handle them.  Still not sure about Arava for pain.  Still

researching.  Broke down and have taken it the last couple days.

Couldn't live without my heatpad either.  I wish someone made mini heat pads for

the individual finger, or a battery pack attachable heat pad. :)

The article that posted by Deborah Pate, DC, DACBR, was really

interesting.  I printed it off and will hopefully show it to my chiropractor on

Monday.  The part about concerns me most is the cranial settling.  My C1 and C2

is usually the most painful everyday.  When it is adjusted it does not feel as

swollen.  Sometimes my chiropractor uses an activator...don't know how to

describe it, but it doesn't hurt, it helps.  It's better to me than getting

electromagnetic shocks from my previous rheumatologist.

I don't know, I just try to do what works for me, and chiropractic, Humira, my

heatpad, hot tubs, and Aleve are my favorites so far.

I hope you have pain free days.

(musiclvr3237)

From: <man_u8@...>

Subject: [ ] Re: Not New---lurked - intro

Date: Friday, February 20, 2009, 4:53 PM

Patty,

HI, I saw a chiropractor for years to help with migranes and it did

wonders. When I got dx w/ RA, my rheumy advised me not to see a

chropractor anymore. My chiropractor popped my fingers and wrists

too, so I think that was the reason why...I don't know if just

getting spine adjustments is OK, but I did feel better. I guess the

only way to see if it would work for you is to try.

> >

> > From: Patty <pattybraud@ >

> > Subject: [ ] Not New---lurked - intro

> > @gro ups.com

> > Date: Thursday, February 19, 2009, 10:04 AM

> >

> >

> >

> >

> >

> >

> > Good morning!

> >

> > I have lurked here on this group for awhile now. I worked over an

> > hour away from home and had little time for myself but my job

ended

> > 1/30 so I now have more time to read and visit.

> >

>

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Share on other sites

Hi :

Yes I knew the plus and negative of Prednisone. I was in such bad shape

when I got hit with RA. I had never heard of it, and have learned lots

about it here.

I think no matter what drug we take, everyone should be aware of the

plus and negative of it. Then we can make a decision of which way to

go.

For me, it was to get out of excruciating pain and suffering, and not be

in a wheel chair. For me it is a wonder drug. When I got hit with RA,

I thought I had a fatal brain tumor. It hit me awful in 5 days. I went

from a totally functioning woman, to bedridden, swollen all over,

couldn't feed myself, dress myself, or stand without help. It was a

very frightening time for me. I tried to use crutches to try and walk,

but couldn't use them. My all over pain level was 10+!!!

My RA is under control, my flares are not often, nor do they last very

long. I am very grateful for that.

Wishing you pain free days ahead.

Hugs,

Barbara

> > >

> > >

> > > Hi Patty:

> > >

> > > Do you take Prednisone daily? I have been on it for 6 years now. I

> > > have tried many times to get off it, but have not been successful

> > doing

> > > so.

> > >

> > > I hate the extra pounds but it sure works good on my RA. I also

> > take

> > > daily Sulfasalazine, Placquenil, MTX injection, 1x a week, and 12

> > hours

> > > after my injection, I take 2 Leucovorin pills. This combination

> > works

> > > well for me. It was a lot of trial and error, but finally this

> > worked

> > > for me.

> > >

> > > I hope you will be pain free soon. Try to rest when you can. I

> > had a

> > > hard time learning to pace myself. That was hard for me to do, as

> > I am

> > > a do-er. I lie down every afternoon, and take a nap when needed.

> > >

> > > Wishing you pain free days ahead.

> > >

> > > Hugs,

> > >

> > > Barbara

> > >

> >

>

>

>

>

>

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Hi, Barbara.

I'm glad prednisone is helping you. There's no doubt that it's a

powerful and useful anti-inflammatory.

I think what is trying to highlight is that, for people who have

been newly diagnosed with RA, starting and staying on daily prednisone

indefinitely may not be the best choice in 2009. There are many other

options to try first.

Many rheumatologists only prescribe prednisone for a short time in the

beginning of the disease course and/or for flares because the side

effects from long-term daily use can be quite serious.

Also, if one starts a daily regimen of prednisone and stays on it for

several weeks or months, it may then be very difficult to discontinue.

Not an MD

On Mon, Feb 23, 2009 at 11:33 AM, Barbara <bcreedon@...> wrote:

>

> Hi :

>

> Yes I knew the plus and negative of Prednisone. I was in such bad shape

> when I got hit with RA. I had never heard of it, and have learned lots

> about it here.

>

> I think no matter what drug we take, everyone should be aware of the

> plus and negative of it. Then we can make a decision of which way to

> go.

>

> For me, it was to get out of excruciating pain and suffering, and not be

> in a wheel chair. For me it is a wonder drug. When I got hit with RA,

> I thought I had a fatal brain tumor. It hit me awful in 5 days. I went

> from a totally functioning woman, to bedridden, swollen all over,

> couldn't feed myself, dress myself, or stand without help. It was a

> very frightening time for me. I tried to use crutches to try and walk,

> but couldn't use them. My all over pain level was 10+!!!

>

> My RA is under control, my flares are not often, nor do they last very

> long. I am very grateful for that.

>

> Wishing you pain free days ahead.

>

> Hugs,

>

> Barbara

>

>>

>> I'm sorry but I just can't let this go by and not comment. Barbara,

> I'm glad that you are happy with your " coctail " choice and I know many

> here take prednisone on a regular permanent basis but someone new needs

> to know the many side effects of prednisone and they're not very good

> ones. If you are new to the world of RA, etc, and wish to go down the

> prednisone road please take the time to check out the many varied side

> effects first.

>>

>> in PA

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Hi :

Thanks so much, and I totally agree with you. Have tried so many times

to get off the Prednisone, but have not been successful. I will keep

trying every so often.

Wishing you pain free days ahead. You are a great moderator.

Hugs,

Barbara

> >>

> >> I'm sorry but I just can't let this go by and not comment. Barbara,

> > I'm glad that you are happy with your " coctail " choice and I know

many

> > here take prednisone on a regular permanent basis but someone new

needs

> > to know the many side effects of prednisone and they're not very

good

> > ones. If you are new to the world of RA, etc, and wish to go down

the

> > prednisone road please take the time to check out the many varied

side

> > effects first.

> >>

> >> in PA

>

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I also tried prednisone and i had some sever side effects. I had to get off of

it quickly. My new blood test results are coming on March 13th.  Then i will

find out how high my rhumatoid factors are. I just wish they would come out with

a cure or a least a medication for Lupus. But it is rare that one has Lupus

without having rhumatoid arthritis and also fibromyagia. Good luck to those who

are taking prednisone.

Kris

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