Re: Lab results...FINALLY

[Guest guest]

> I have AS. I was diagnosed a year and half ago. My Rhuemy says that pred

> doesn't work for AS.

>

Whaaaaat?

It has saved me, and I have AS.

Pris

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[Guest guest]

I

> i would be dead without it. my ra is severe my rhuemy has told me it will

> definately shorten my lifespan it is so bad. so if i can have a few good days

> every now and then with prednisone and go to church or get groceries then

> thank god for prednision. this support group totally is against prednison. is

it

> me will i be doomed because i take it for flares????thanks rita>>>>

>

Rita,

I have used it for ten years, and have virtually no side affects from pred.

Lately, I have noticed my skin seems more fragile, but I have been on 7.5 mg

to 20 mg for almost a decade. My eyes are great, no face swelling, blood tests

are good, bone is strong.

I had anither bone scan, everything is great, as always...

Without it, I could not lead a quality life, day by day. I will trade the

side affects, I don't want to go through life miserable.

It's a personal choice, but for me, without pred I think I would jump off a

bridge...

It really is a balance, the drugs you take.

If this disease is destroying your quality of life, and your doc agrees,

taking some risks sure beats suffering until you die.

Pris

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[Guest guest]

Rita, I'm in pretty good health overall, and will be 64 years old/young

(depending on my day) in 2 weeks. I was 'laid off' my job when I first

started really suffering from the RA. I ended up in bed for a couple of

years and home-bound for more. I haven't been able to work since 1991, but

am considering doing some substitute teaching to help our finances.

Re: [ ] Re: Lab results...FINALLY

>

> I've been taking Prednisone since 1990 at around the 10mg level. Before

> that, I was getting relief from APC's (aspirin), and hadn't found an

> anti-inflammatory that worked. I'm still taking Pred and have added

> Morphine

> a few years ago after having the quack Rummy take me off almost all meds.

> The MS Contin does a good job, but still doesn't do any good for

> breakthrough pain. Also, I almost never get any reports of blood tests.

> For

> me, no news is good news.

>

> Dennis in eastexas

[Guest guest]

I

> no rita you wont be doomed! we all have our views on this HORRIBLE med but

> YES it does HELP but KILLS as well!!! i know first hand what this med does

> for me & what IT DOES TO MY BODY... my BONES are always fracturing or

breaking,

> i cant walk, i have gained soo much weight & my BONES cant TAKE IT>>>>

>

I think an exercise and weight monitoring program is essential to initiate

with prednisone, long term.

Some of the side affects of prednisone can be controlled.

Prednisone makes my body think I am hungry when it is not! I noticed this the

first week, and taught myself to ignore it. It took some time to ignore the

signals. Eventually, they went away (cravings to eat).

Every morning I get up and do stretching and weight bearing exercises for

my bones for 30 minutes. It is very BORING! Of course, I take calcium and vit

D.

Keeping my weight down helps with the threat of high blood pressure, and

diabetes from the drug.

My point is, we can control some of the affects of the drug, yet benefit

from the affect it has on painful inflammation.

We DO have some control.

Pris

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

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[Guest guest]

hi myndi, im soo SORRY for all your pain & grief. yes it can be hard to have

2kids with an illness & all you WANT to do is MAKE THEM BETTER & PAIN FREE!!

heres a SUGGESTION,why not get a nuclear study done on your kids if your that

CONCERNED? i was having similiar problems & the dr.could not find out why i was

in sooo MUCH PAIN.however yesterday my life turned AROUND for the BETTER &

hopfully by having this test done, i HOPE to find the culprit of this CONSTANT

PAIN!! it never HURTS TO TRY NEW THINGS especially for your kids!!! i WISH YOU

HOPE TO FIND THE ANSWERS YOU ARE LOOKING FOR. GOOD LUCK & GOD BLESS,MELYNDAGAMEZ

4/2/08 12:20A.M. CENTRAL TIME

[ ] Re: Lab results...FINALLY

Thanks Kate. I'm so glad to hear you say that Pred doesn't always work for AS.

It really

doesn't work for my kids. Therefore, the Dr thinks their pain isn't due to

their arthritis

when we know it is. What else would it be? My daughter's Dr is sending her to

PT which is

helping, but I still am worried about long term damage. Neither one has ever

tried

Remicade. My son tried Enbrel - no luck either. Both have done/do MTX - don't

know

how much this is helping. They both have lower leg pain mainly. Ankles hurt

the most

and then the knees. They can't stand too long or walk too long. My daughter

has been

having neck pain and has had shoulder & elbow pain as well. These haven't

lasted too

long. Sports are manageable since they are giving a lot for a short amount of

time. We're

always being told that they don't show signs of swelling so everything " looks

good " . Well,

it's my understanding that AS doesn't show obvious swelling, so then what do we

do? We

can't get MRI's every month. They have pain every day and they adjust. Great!

But, what

about long term damage? That's what is frightening me.

As for other symptoms - they have included vision problems, dizziness, GI

problems,

urinary problems, chest pain, numbness in feet, gall stones, swollen lymph nodes

in GI, GI

inflammation, vasculitis in legs (that we know of), psoriasis.... All of this

" stuff " brought on

depression in my son - who can blame him??? So, we had to add that to the list

of what

we are battling. It's never ending - and still they have pain every day!

By the way, most of the above symptoms started in my son when he had been

medication

free for almost an entire year, so they have basically ruled out the fact that

it could be due

to medication.

Still searching for answers.... Myndi

> >Hi Rita in Georgia! My 15 yr old son and 8 yr old daughter both have

> >Ankylosing

> >Spondylitis. Son was diagnosed 12 yrs ago and daughter 3 years ago. Any

> >insight into

> >what we can be doing as I look to their future? Neither one is doing very

> >well right now

> >with many complex problems with no answers other than they have

> >arthritis. None of the

> >drugs seem to work for very long with either one of them and they both

> >have such

> >stomach pain right now that they are both off of pain meds to try to ease

> >their stomaches.

> >Prednisone hasn't been very successful for them when they have tried it.

> >Myndi

>

>

>

>

>

>

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>

[Guest guest]

Melynda, sounds like you had a nuclear test done yesterday?? Let me know if it

finds any

answers for you. I hope it does. I'll ask the kids' doctors at the next appt.

Thanks! Myndi

> > >Hi Rita in Georgia! My 15 yr old son and 8 yr old daughter both have

> > >Ankylosing

> > >Spondylitis. Son was diagnosed 12 yrs ago and daughter 3 years ago. Any

> > >insight into

> > >what we can be doing as I look to their future? Neither one is doing very

> > >well right now

> > >with many complex problems with no answers other than they have

> > >arthritis. None of the

> > >drugs seem to work for very long with either one of them and they both

> > >have such

> > >stomach pain right now that they are both off of pain meds to try to ease

> > >their stomaches.

> > >Prednisone hasn't been very successful for them when they have tried it.

> > >Myndi

> >

> >

> >

> >

> >

> >

>

________________________________________________________________________________\

____

> > No Cost - Get a month of Blockbuster Total Access now. Sweet deal for

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> and friends.

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> >

> >

[Guest guest]

Whenever I was given Prednisone, I did not eat any

differently. I didn't eat unhealthy, and I gained 10

lbs during the month I was on it. Yet upon stopping

the medication, I lost the weight in about 2 weeks,

still eating the same. With Lyrica, I barely ate

anything at all, and still gained 10 lbs in about a

week, but once stopping it, the weight went completely

away.

--- bylg673k@... wrote:

>

> I

>

>

> > no rita you wont be doomed! we all have our views

> on this HORRIBLE med but

> > YES it does HELP but KILLS as well!!! i know first

> hand what this med does

> > for me & what IT DOES TO MY BODY... my BONES are

> always fracturing or breaking,

> > i cant walk, i have gained soo much weight & my

> BONES cant TAKE IT>>>>

> >

>

> I think an exercise and weight monitoring program

> is essential to initiate

> with prednisone, long term.

> Some of the side affects of prednisone can be

> controlled.

> Prednisone makes my body think I am hungry when it

> is not! I noticed this the

> first week, and taught myself to ignore it. It took

> some time to ignore the

> signals. Eventually, they went away (cravings to

> eat).

> Every morning I get up and do stretching and

> weight bearing exercises for

> my bones for 30 minutes. It is very BORING! Of

> course, I take calcium and vit

> D.

> Keeping my weight down helps with the threat of high

> blood pressure, and

> diabetes from the drug.

> My point is, we can control some of the affects of

> the drug, yet benefit

> from the affect it has on painful inflammation.

> We DO have some control.

> Pris

>

>

> **************

> Create a Home Theater Like the Pros. Watch the video

> on AOL

> Home.

>

>

(http://home.aol.com/diy/home-improvement-eric-stromer?video=15 & amp;

> ncid=aolhom00030000000001)

>

>

> [Non-text portions of this message have been

> removed]

>

>

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