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In a message dated 9/17/01 10:36:24 PM Central Daylight Time,

erinananda@... writes:

> my rheumy said I have PA. But I don't have

> morning stiffnes, just pain after using joints. Unilateral

> sacroiliitis, pain from light, noise; " brain fog " .

>

Sounds like it is PA. I went to the orthopedic surgeons 6 times mainly with

pain in joint(1 at a time). I would have sworn the bone was broke it was so

painful. But it would only last 3 days in the beginning. I never woke up

stiff or sore at the start. Finally the ortho told me to see a

epidemiologist ( sounds like a bug doc hey?) to get tested for an autoimmune

disease. Luckily the one I went to was also a professor of rheumatology.He

tested me for autoimmune and it came back positive. He then took 6 more

tubes of blood to test for which autoimmune disease I had and they all came

back negative. His diagnosis was psoriatic arthritis since I had psoriasis

and it stayed the same through different doctors until June this year. It

was them the rheumatoid factor came back as positive so now I have both. It

was a couple of years after being diagnosed by the first rheumy that I

started having more and more and more painful swells. All in the beginning

were after doing something I didn't think was strenuous but my body said " OH

YES IT WAS " . Have faith in the diagnosis. If you haven't been tested for

rheumatoid factor you might want to ask to be tested. Another thing I advise

is to find a proactive doc as soon as possible to get started on DMARDS

before your joints begin to erode.

Best of luck

Wishing painfree days

Chicagoland Sharon

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In a message dated 09/17/2001 11:41:20 PM Eastern Daylight Time,

erinananda@... writes:

<< But I don't have

morning stiffnes, just pain after using joints. Unilateral

sacroiliitis, pain from light, noise; " brain fog " .

I thought morning stiffness and sausage digits were necessary for

diagnosis.

Any relevantt experiences would be appreciated. >>

Hi Fred - I didn't have and still don't have any sausage digits. I don't

really have morning stiffness every day either - some days or worse. I have

quite a bit of stiffness though after getting to work (trying to get out of

the car after a 30 min. commute). So anyway, to answer your questions,

sausage digits and morning stiffness are symptoms of PA, and they are very

common, but I don't think they are necessary to make the proper diagnosis.

Best of luck to you in your treatment plan,

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" Fred " wrote:

> because I have psoriasis my rheumy said I have PA. But I don't

have

> morning stiffnes, just pain after using joints. Unilateral

> sacroiliitis, pain from light, noise; " brain fog " .

> I thought morning stiffness and sausage digits were necessary for

> diagnosis.

> Any relevantt experiences would be appreciated.

Fred--One thing I have figured out from this board is that two people

with PA can have completely different and non-overlapping symtoms,

and that even the psoriasis sometimes shows up after the PA! I do not

have sausage digits, and my hands are mostly unaffected, but I can

barely walk much of the time due to pain and swelling in my ankles,

feet, and knees. Others of us have most symptoms in their hands and

arms, still others in their backs and hips. I am beginning to think

there is some kind of underlying disease that expresses itself

differently in different people, whether it ends up being called PA

or RA or lupus or any of the other many many inflammatory diseases. I

personally am glad I have a diagnosis to work with, since I can now

start the process of finding the right treatment. (I couldn't handle

MTX and am now starting Arava--so far so good after 5 days.)I know

that the morning stiffness thing is pretty much a required symptom

for a dx of RA but I am not sure that's true for PA, but most of your

other symptoms sound pretty typical, including the light and noise

sensitivity. (I also have those.) DO you have odd, ridged, or

detaching nails on your hands or feet? SOmething like 80 percent of

us have that.

The main thing is to find some treatment that will make you feel

better, regardless of what the diagnosis is. Nobody should have to go

through the discomfort you are having without some help.

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In a message dated 09/18/2001 1:08:19 PM Eastern Daylight Time,

momscmbc@... writes:

<< If you haven't been tested for

rheumatoid factor you might want to ask to be tested. Another thing I

advise

is to find a proactive doc as soon as possible to get started on DMARDS

before your joints begin to erode. >>

I agree with Sharon on that - It's sort of funny that some of us have posted

" oh yes, you probably have PA " and others have said " doesn't sound like PA " .

And we wonder why our doctors have such trouble diagnosing! The problem with

PA is that there is no test FOR it, doctors can only rule out other things.

I'd say the bottom line is, make sure you have doctors that you trust and

have faith in - then believe in them and their diagnosis and learn all you

can about treatments, etc. and take an active role in your care.

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In a message dated 09/18/2001 1:11:06 PM Eastern Daylight Time,

sarahr@... writes:

<< DO you have odd, ridged, or

detaching nails on your hands or feet? SOmething like 80 percent of

us have that. >>

- I don't have nail problems, or much P except a bit on the scalp, or

sausage digits, or morning stiffness, or brain fog. But I do have PA - go

figure :)

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Hi Fred,

It has been my experience that if you have psoriasis, problems with the joints

are attributed to psoriatic arthritis. A blood test will tell if you have

arthritis, although some of the same indicators are indicative of rheumatoid

arthritis and PA. I don't think you have to have morning stiffness or sausage

fingers. I didn't. I started out with water on the knee (my knee swelled up like

a small grapefruit). And my fingers never got " sausagy " , just stiff and

eventually a little crooked. Hope

this info helps. -- Jan O', Alaska.

Fred wrote:

> because I have psoriasis my rheumy said I have PA. But I don't have

> morning stiffnes, just pain after using joints. Unilateral

> sacroiliitis, pain from light, noise; " brain fog " .

> I thought morning stiffness and sausage digits were necessary for

> diagnosis.

> Any relevantt experiences would be appreciated.

>

>

>

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: What symptoms do you have? How were you diagnosed?

Re: [ ] Re: incorrect diagnosis?

> In a message dated 09/18/2001 1:11:06 PM Eastern Daylight Time,

> sarahr@... writes:

>

> << DO you have odd, ridged, or

> detaching nails on your hands or feet? SOmething like 80 percent of

> us have that. >>

> - I don't have nail problems, or much P except a bit on the scalp,

or

> sausage digits, or morning stiffness, or brain fog. But I do have PA - go

> figure :)

>

>

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To All:

There is a blood test that will give a positve diagnosis for PA. It is

called the HLA- B27. It is antibody test. A large percentage of PA suffers

will have a positive titer for this antibody. I'm not sure though of the

exact percentage of PA sufferes with this positve antibody. Mine came back

mega high.

Charlene

Re: [ ] incorrect diagnosis?

> In a message dated 09/18/2001 1:08:19 PM Eastern Daylight Time,

> momscmbc@... writes:

>

> << If you haven't been tested for

> rheumatoid factor you might want to ask to be tested. Another thing I

> advise

> is to find a proactive doc as soon as possible to get started on DMARDS

> before your joints begin to erode. >>

> I agree with Sharon on that - It's sort of funny that some of us have

posted

> " oh yes, you probably have PA " and others have said " doesn't sound like

PA " .

> And we wonder why our doctors have such trouble diagnosing! The problem

with

> PA is that there is no test FOR it, doctors can only rule out other

things.

> I'd say the bottom line is, make sure you have doctors that you trust and

> have faith in - then believe in them and their diagnosis and learn all you

> can about treatments, etc. and take an active role in your care.

>

>

>

>

>

>

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In a message dated 09/20/2001 2:46:02 PM Eastern Daylight Time,

mamacin@... writes:

<< : What symptoms do you have? How were you diagnosed?

>>

- I had a bacterial blood infection (psuedomonis) after surgery which

set off my first flare - a huge one. After a week in the hosp. on IV

anti-biodics, my knees became red and hot to the touch, my wrists ached, I

couldn't walk from one room to another without holding onto something and

screaming in pain. This got worse and worse. I was told it was everything

from " drug fever " to PMS. Finally, when I cried in my doctor's waiting room

and told her I'd be in a wheelchair by next week, I was sent to a rheumy.

She tested me for Lupus, Lyme, RA, etc. which all came back negative.

Because of the one tiny spot of P on my wrist, the hotness of my knees and

the way this came on after a major bacterial infection, she dx'ed it as PA.

I think she was right because I've responded to MTX and Prednisone when all

the other NSAIDS did absolutely nothing for the pain.

I'm starting Enbrel soon as I want to get off the MTX because of elevated

liver enzymes.

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In <003d01c14196$6fe282e0$9bd5e13f@e0h4n7>, on 09/19/01

at 11:37 PM, " Charlene Ahrens " <charahrens@...> said:

>There is a blood test that will give a positve diagnosis for PA.

>I'm not sure though of the

>exact percentage of PA sufferes with this positve antibody.

These two statements sound contradictory - could you explain, please.

--

- Mark

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

marka@...

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

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In a message dated 9/18/01 12:10:46 PM Central Daylight Time,

sarahr@... writes:

> (I couldn't handle

>

,

I'm so happy for you and I hope the Arava continues for a long long time.

Some good news is refreshing to hear.

Chicagoland Sharon

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