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Re: How were you diagnosed

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Kathy, it took me several months(10) before I got a correct

diagnosis! Im now on Embrel and Ive just taken my 3rd shot. I'm

hopeing it helps as I have trouble sleeping also. People dont

understand what this feels like! Good luck, wish you the best of luck.

" Bill " <middleton.bill@...>

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Kathy: I just discovered 8 months ago that I had PA and I was 69 at the time -

much older than you but in pretty good shape for my age. I have had a problem

with anti-inflammatory meds too and now cannot take them because I developed

ulcerative colitis a few months after the PA was diagnosed. Don't worry,

though; there are great meds out there that can help, particularly the biologics

(Remidade is likely the one your cousin is on - I use Enbrel). This group will

really be helpful with the practical, day to day stuff but you need to go on

line yourself and do some research. There is a lot out there and - in

particular - the national association that works of psoriasis related issues has

great stuff. Sorry I can't remember their exact name at the moment but you'll

recognize it when you see it. You owe it to yourself to be a well-informed

patient and will have a step up on me because you know pretty much what your

disease is right now and will be

able to come up with a list of questions for your first visit. I went in cold,

only knowing that something was causing a systemic kind of inflammation in my

body - had never even heard of PA when I was suddenly told I had it and my

doctor wanted to put me on Enbrel. Didn't know what that was, either, and all

she said was " it has a 3% risk of causing lymphoma " ; but all the drugs have

problems and I think this one is best for you. She also worked with my

insurance company to go thru the approval process and make sure they would cover

it.

Joanna Hoelscher

630-833-7361

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Hi Kathy,

Your symptoms sound familar, it COULD be Psoriatic Arthritis.

Your " bumps/rash " could be psoriasis. The X-ray did NOT diagnos PA,

It simply showed that your joint has already suffered damage that

could be due to PA. Many of us here have normal sed rates.

I'm not sure what type of doctor you are seeing or what type of

specialist you are being sent to, But I hope that means your Primary

care Physician is sending you to a Rheumatologist. If so, great!! If

not, be wary, It very much sounds like your next stop should be to a

Rheumatologist. PA is usually diagnosed by eliminating all other

factors and can commonly be misdiagnosed or undiagnosed.

You might also benefit by seeing a dermatologist to see what

those " bumps " are. If Psoriasis, it would aid in your diagnosis.

Unfortunately for you, NSAIDS are usually the first line of defense

in helping to make you more comfortable. Hopefully there are options

you can tolerate. BUT all NSAIDS simply treat the symptoms of PA.

They do NOT treat the cause. Once you are diagnosed, you will need to

learn about all the options for treating your disease.

Stay Well,

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Kathy -

Many people are allergic to certain non-steroidal anti-inflammatory

meds but not to others. So check it out carefully. One may work for

you. Aspirin has cardiac benefits and is cheap. So if it works for

you, go for it. I usually use Aleve or Advil - the expensive, Rx drugs

weren't any better.

I mostly diagnosed myself. I knew a lot about autoimmune diseases at

the time I had my first major flare, and I had had psoriasis when I

was a kid. By the time I got to the rheumy's office, I had figured it

out. During my exam, I asked the doc many pointed questions. So he

finally asked me about my background and what it was I did for a

living. After I told he he said that, if I was so smart, what did I

think I had? So I said psoriatic arthritis, and he told me I was

right. Cool comfort for passing the test, but at least it explained

all my health mysteries from the previous 3 decades.

Jackie

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Thanks so much, Bill, I picked up the copy of my x-ray report yesterday and

it says the differential diagnosis for these findings is psoriatic arthritis,

though consider less likely. So, I guess I will have to wait to see the

specialist to find out exactly what is going on. Maybe I just have severe

degenerative osteoarthritis.

Good luck with your treatment. I hope I have an answer soon. Kathy

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Hi All,

I really appreciate all of your kind thoughts and advice. I got the

approval to see a Rheum. today and my apt is set for April 18th. I go to the

dermatologist tomorrow. I had 2 skin biopsies done by my primary care Dr that

showed atypical cells so he referred to the dermatologist. I will mention to

him

what else is going on in my life right now and have him check for any signs

of psoriasis. Maybe that is what the rash is that I get from time to time.

Thanks, again, for taking the time to respond.

Stay well.......Kathy

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