Re: 4yr old Daughter just diagnosed

[Guest guest]

In a message dated 2/14/2003 1:28:33 PM Eastern Standard Time,

agcshort@... writes:

> My 4 year old daughter was just diagnosed with psoriatic arthritis.

> Previously she had been diagnosed with pauciarticular JRA, but the

> other day they changed their diagnosis. I am seeming to have a hard

> finding others with children this young having it. So far she does

> not have the skin part of the disease,

I'm a little confused. I thought that the skin part of psoriasis always

comes first before the PA. At least, that is what happened to me. How can

they diagnose PA with any skin involvement? It doesn't make sense to me. If

anyone knows the answer to this, please let me know.

Janet

[Guest guest]

Janet, I'm 40 years old, when I was twenty seven I

started having swelling in my feet. Doctors just

thought it was joint fatigue due to the fact I crawled

around the inside of commercial aircraft wings for a

living. Over the next year and a half I started

getting knee swelling, never during this time did I

have any problems with skin involvement.

It wasn't until I had knee surgery that I discovered I

had PA, they sent samples of tissue and fluid from my

knee to the mayo clinic in Minnesota, the results from

these tests finally gave me the answer to my swelling

issues.

Thankfully to this day I have very little skin

involvement, I'm really sorry to hear such a young

child has been diagnosed with PA. My prayers are with

you and your daughter, Joe.

Re: [ ] 4yr old Daughter

just diagnosed

> In a message dated 2/14/2003 1:28:33 PM Eastern

Standard Time,

> agcshort@... writes:

>

> > My 4 year old daughter was just diagnosed with

psoriatic arthritis.

> > Previously she had been diagnosed with

pauciarticular JRA, but the

> > other day they changed their diagnosis. I am

seeming to have a hard

> > finding others with children this young having it.

So far she does

> > not have the skin part of the disease,

>

> I'm a little confused. I thought that the skin part

of psoriasis always

> comes first before the PA. At least, that is what

happened to me. How can

> they diagnose PA with any skin involvement? It

doesn't make sense to me. If

> anyone knows the answer to this, please let me know.

> Janet

>

>

> [Non-text portions of this message have been

removed]

>

>

>

> Please visit our Psoriatic Arthritis Group's

informational web page at:

> http://www.wpunj.edu/pa/ -- created and edited by

list member aka(raharris@...).

>

> In August 2001 list member Jack

aka(Cornishpro@...) began to conduct extensive

research which he publishes as the Psoriatic Arthritic

Research Newsletter monthly in our emails and digest

format. Many thanks to Jack. Back issues of the

newsletter are stored on our PA webpage.

>

> Also remember that the list archives comprise a

tremendous amount of information (Over two years of

messages and answers).Feel free to browse them at your

convenience.

>

> Let's hear from some of you lurkers out there! If

you have a comment or question chances are there is a

person who has been around a while who can help you

out with an educated guess for an answer. If not we

can at least steer you in the right direction with a

good website to go to for the answers.

>

> Blessings and Peace,

>

> Atwood-Stack, Founder

> Alan , Web & List Editor

> Jack , Newsletter Editor

> Pat Bias, List Editor

> Ron Dotson, List Editor

> and many others who help moderate (thank you!)

>

>

>

[Guest guest]

In a message dated 2/14/2003 9:17:35 PM Eastern Standard Time, fam24@...

writes:

> I'm a little confused. I thought that the skin part of psoriasis always

> comes first before the PA. At least, that is what happened to me. How can

>

> they diagnose PA with any skin involvement? It doesn't make sense to me.

> If

> anyone knows the answer to this, please let me know.

> Janet

>

Well, this is what her pediatric rheumatologist has said...

" In some people with juvenile psoriatic arthritis, the arthritis shows up

before the rash. In these cases, diagnosis can be so difficult that it may

take up to 10 years to be certain of a definite diagnosis "

also

" The skin condition, psoriasis, may actually precede or follow psoriatic

arthritis. "

Another factor in her diagnosis is her father has psoriasis, just the skin

condition.

Hope this clears up the confusion for you. Thanks for the welcome.

(4 yr old daughter with PA)

[Guest guest]

The P is a precondition for PA in 98 – 99% of documented cases. It

is possible that someone develops PA without ever having had visible

symptoms of P, but boy, I would be suspicious.

One possible explaining is that PA is a negative blood test. That

is, they believe you have arthritis and exclude others types,

particularly rheumatoid arthritis. The blood test does not say you

have PA, just that you don't have other types, so you must have PA.

Usually, they can see or the patient reports having had P and they

can look for other symptoms, such as the pitted nails.

If it were my child, I would ask what specifically led the doctor to

the PA diagnoses. If it was not definitive evidence or at least

clear specific reasons, I would look for a second opinion ASAP.

> Hi,

>

> My 4 year old daughter was just diagnosed with psoriatic arthritis.

> Previously she had been diagnosed with pauciarticular JRA, but the

> other day they changed their diagnosis. I am seeming to have a hard

> finding others with children this young having it. So far she does

> not have the skin part of the disease, the psoriasis part. Her

> affected joints are her toes in one foot. They have started her on

> sulfasalzine, and I am concerned about the side effects. I would

love

> to talk to any other parents with more experience on what works for

> them, or just to hear other's stories.

> Thanks so much

>

[Guest guest]

At 09:15 PM 2/14/2003 -0500, Janet wrote:

>I'm a little confused. I thought that the skin part of psoriasis always

>comes first before the PA. At least, that is what happened to me. How can

>they diagnose PA with any skin involvement? It doesn't make sense to me. If

>anyone knows the answer to this, please let me know.

Hi Janet,

PA without skin involvement is diagnosed all the time. Usually it's found

as a differential diagnosis from rheumatoid arthritis. Doctors diagnose PA

based on asymmetrical joint involvement and negative rheumatoid factor,

along with other blood measures common for arthritis. Also, having the

distal finger or toe joints inflamed (leading to 'sausage finger'

appearance) is indicative of PA.

Elfstrom

[Guest guest]

The only signs of P I have is on my fingernails (pitting, yellow

discoloration and separation from the nail bed). That's what caused my

diagnosis to be so difficult. I am hoping I don't ever get it anywhere else

since PA is hard to deal with on its own. I really feel for all of you that

have to endure both.

take care,

Re: [ ] 4yr old Daughter just diagnosed

> In a message dated 2/14/2003 1:28:33 PM Eastern Standard Time,

> agcshort@... writes:

>

> > My 4 year old daughter was just diagnosed with psoriatic arthritis.

> > Previously she had been diagnosed with pauciarticular JRA, but the

> > other day they changed their diagnosis. I am seeming to have a hard

> > finding others with children this young having it. So far she does

> > not have the skin part of the disease,

>

> I'm a little confused. I thought that the skin part of psoriasis always

> comes first before the PA. At least, that is what happened to me. How

can

> they diagnose PA with any skin involvement? It doesn't make sense to me.

If

> anyone knows the answer to this, please let me know.

> Janet

>

>

>

[Guest guest]

In a message dated 2/16/2003 3:15:39 AM Eastern Standard Time,

leslieiansa@... writes:

> The only signs of P I have is on my fingernails (pitting, yellow

> discoloration and separation from the nail bed). That's what caused my

> diagnosis to be so difficult. I am hoping I don't ever get it anywhere

> else

> since PA is hard to deal with on its own. I really feel for all of you

> that

> have to endure both.

>

> take care,

>

>

>

That's so strange. I remember my PCP looking at my nails when I told him my

fingers were stiff, and I could not figure out WHY??? (I did not realize P

affected the nails, and my P was so minimal at the time) He didn't even ask

if I had P, but told me he was looking for pitting in the nails to rule out a

certain type of arthritis. Since he found no pitting, he sent me away with

some ibuprofen, and told me I might have sprained my 2 fingers (sausage

digits), and to come back if they didn't get better in a few weeks. (what he

didn't know was this had already gone on for 6 months!) So, I went back to

him... he looked for pitting AGAIN, much to my dismay. Finally he did a

yearly exam on me about 4 months later, and said " , you never told me

you have P! " I asked why it mattered, and it was at that time he told me that

that was why he was looking for pitting! UGH! I could not believe it. I had

NO CLUE that PA existed, and was completely dumbfounded! He set up a Rheum

appt, and it was off to the races! I guess what I am saying, is if my nails

had been the ONLY thing affected, his diagnoses would have come so much

easier. It wasn't till I had my clothes off and he saw my elbows that he

realized I had P. (He even took a flashlight to look through my nails trying

to find pits)