psoriatic arthritis help

I'm not sure if y'all can help me, offer advice, etc., but you were the
first place I thought of to come to. I've here, on and off (mostly
lurking), for several years.

I was diagnosed as having RA in my late 30's - I'm 60 now. For several
years before that I was misdiagnosed as having SLE.

This past week I switched doctors. The decision was made from an
accumulation of things over the last 20 years or so, and the final
realization that I was more $$ than patient.

So, I had my first meeting with my new RA on Friday. Very nice man, soft
spoken, looked at my hands, knees, feet and toes. And said I didn't have
RA, I have psoriatic arthritis. Huh? Totally blew me away. Dumbfounded.
I don't have any rashes, never have. He said the treatment was basically
the same, and I will remain on my current prescriptions. He did change my
pain medication, thank heavens. I'd been telling my X-RA for the last year
or so that the hydrocodone/Tylenol not only didn't work well, it made me
itch! (And he didn't make me feel like I was a drug addict.)

He asked me if I had any questions, but frankly, I was so blown away I
couldn't think of even one, at the time. I've done some looking on the
internet, but what I find sounds like RA. Are there any specific blood
tests for it? What does it mean long term? I have the joint deformities,
I've had surgery on my right hand, back surgery 2 decompressions, 2 fusions.

I just don't know what to do. Any insight, advice, information, anything
will be greatly appreciated.

Sharon

Greetings Sharon from another PA-er! I was originally diagnosied with RA,
partly because it runs in my family and partly because my initial
presentation looked much more like RA, even though I had definite psoriasis.

PA vs. RA is a goodnews-bad news sort of thing. It seems that the milder PA
is much less severe than RA, but it also seems that the more severe cases are
harder to get & keep under control. Of course that, like everything else, is
changing some with the new meds.

The medications for the two are pretty much the same at this point. For a
while there PA was much slower to get on the official list for the new meds
than RA, but that's not been true with the last couple of new biologics -
much shorter time lag there. I think the drug companies are doing trials on
both illnesses simultaneously now. One of the newest biologics is thought to
possibly be more effective for PA than for RA, but I can't recall offhand if
it is humira or orencia.

ummmmmmm, let's see - you mention back surgeries - there is a psoriatic
spondylitis that effects the spine more than the other joints, but can hit
anywhere. I forget the details, as my spine sseems ok in that regard (just
has hypermobility issues!).

That leads to mentioning a website. I am bullish on the National Psoriasis
Foundation. They are very centered on research of both psoriasis and
psoriatic arthritis as well as sharing treatment news, including any folk
rememdies that any member reports having worked for them. And if you are
interested, you can join for as little as $1 a year. They also have a nice
amount of general info on their website: http://psoriasis.org

There is no certain lab test to rule out RA vs. PA. RDs have to go by
clinical presentation. Among other things, they consider what joints are
affected and in what pattern they are affected. That's where my diagnostic
issues showed up - it wasn't until later on that problems showed up in joints
that RA doesn't affect.

Some folks who have PA don't develop the skin issues until after the joint
problems, though that is a smaller percentage. And the meds they've been
using for more active auto-immune arthritis the last 20-25 years, your immune
system may be knocked down enough that the skin lesions never did develop. I
know ssomeone here with PA who never suspected he had psoriasis. He'd had a
couple of minor rashes once or twice that he thought were just skin
irritations. He'd even did internet investigations after the joint problems
started going wild and swore he didn't have psoriasis. It was only after he
finally saw an RD that he learned the irritated areas had indeed been
psoriasis.

OK, I've been rambling. What did I not address? Oh, and there are some
people who have been diagnosed with RA *and* PA or seronegative RA with
psoriasis or Ps and PA with a positive Rheumatoid factor....... They just
don't know yet where the dividing line is on some of these auto-immune
ailments. They have made astounding progress in the last 20 years or so, but
there's still a long way to go. Check out psoriasis.org and come back with
any more questions you may have.

--
Nann
remove the Gator cheer to email me
Simply the thing I am shall make me live --- William Shakespeare

On Feb 11, 9:54 pm, "Sharon & Jack" <rottnk...@earthlink.net> wrote:
> I'm not sure if y'all can help me, offer advice, etc., but you were the
> first place I thought of to come to. I've here, on and off (mostly
> lurking), for several years.
>
> I was diagnosed as having RA in my late 30's - I'm 60 now. For several
> years before that I was misdiagnosed as having SLE.
>
> This past week I switched doctors. The decision was made from an
> accumulation of things over the last 20 years or so, and the final
> realization that I was more $$ than patient.
>
> So, I had my first meeting with my new RA on Friday. Very nice man, soft
> spoken, looked at my hands, knees, feet and toes. And said I didn't have
> RA, I have psoriatic arthritis. Huh? Totally blew me away. Dumbfounded.
> I don't have any rashes, never have. He said the treatment was basically
> the same, and I will remain on my current prescriptions. He did change my
> pain medication, thank heavens. I'd been telling my X-RA for the last year
> or so that the hydrocodone/Tylenol not only didn't work well, it made me
> itch! (And he didn't make me feel like I was a drug addict.)
>
> He asked me if I had any questions, but frankly, I was so blown away I
> couldn't think of even one, at the time. I've done some looking on the
> internet, but what I find sounds like RA. Are there any specific blood
> tests for it? What does it mean long term? I have the joint deformities,
> I've had surgery on my right hand, back surgery 2 decompressions, 2 fusions.
>
> I just don't know what to do. Any insight, advice, information, anything
> will be greatly appreciated.
>
> Sharon

Welcome to the group, Sharon. I have PA, too. I was diagnosed with P
when I was very young, so when I started showing signs of arthritis in
my hands at age 29, the diagnosis was a no-brainer.

IIRC there is no specific test for PA, it is a diagnosis made through
elimination of other diseases. Fortunately, the treatments for PA &
RA are very similar, so you won't necessarily have to worry about
having to change your meds. Even though you don't have any lesions,
you might want to check out the alt.support group for people with P.
It can be found at: alt.support.skin-diseases.psoriasis. I have been
a member for a long time - there is some great information & support
over there.

When is your next appointment with the new RD? Maybe you could write
down all your questions, like how did he arrive at the changed
diagnosis, what does it mean long-term, etc., & call him or ask him at
your next appointment. FWIW, methotrexate (MTX) and Humira put my PA
into complete remission. Now I only take the Humira - it is like a
wonder drug!

One thing I think I should caution you about is the use of steroids,
like prednisone, to help control your arthritis. While this sounds
like an ok idea, steroids wreak havoc with P. Abruptly stopping
steriods frequently makes P flare, which can also make your PA flare,
which puts you back on the steroids - a vicious cycle. Be sure to
read the info from the NPF site that Nann gave you - it is very good.
And, as always, if you've got questions or concerns, come back here &
we'll talk them through.

HTH -

Plantmistress

Sharon, I may be wrong, but I've come to the conclusion that the dx
doesn't much matter, especially if you don't have psoriasis. I've been
to numerous rheumies over the years and most have diagnosed me with
PA, but i've never had a rash, ever. it has to do with which joints
are affected and how they look. Plus my rheumatoid factor has always
been negative. My current RD says I have RA . . . but the treatment is
the same, so that changes nothing.

anyhow, welcome to the "who knows?" club.

diane

Hi Sharon,

I don't have PA but I do have AS which is in the same group. The group
is spondyloarthropathies.
I have found the message boards at spondylitis.org to be very helpful.
There are a lot of people there who have experience with both PA and
AS and I find them to be very helpful and sympathetic.
Good luck to you,
Charlene

Thank you to everyone who responded. Nann, I was still so shocked from my
dr's diagnosis, that I had to save your response, along with the others, and
go back to reread them. Then I sat down and started thinking:

My Mom had psoriasis. One of my brothers has seborric dermatitis, my
daughter was recently diagnosed with spondyloarthritis, her 13 yo has just
recently developed what looks like psoriasis. Looks like my family is trying
to cover the spectrum. I'm also diabetic, which I've heard may also be
autoimmune related.

Thanks for the links - I think I'll be doing a lot of reading.

I hope everyone has a pain free evening.
Sharon

On Feb 14, 11:24 am, "Charrlygrl1" wrote:

> I don't have PA but I do have AS which is in the same group. The group
> is spondyloarthropathies.
> I have found the message boards at spondylitis.org to be very helpful.

Have you visited the KICKAS site?

Or the Ankylosing Spondylitis Association site?


.... Backup not found: (A)bort (R)etry (S)lap nearest innocent
bystander?

Charlene,

Where the heck have you been. Long time no hear. How are you doing? I have
been wondering how you were and what happened to you.
--

Love and hugs Jo

(\__/) .~ ~. ))
/O O ./ .'
{O__, \ {
/ . . ) \
|-| '-' \ } )) Warning: squirrels.
.( _( )_.'
'---.~_ _ _&

> I don't have PA but I do have AS which is in the same group. The group
> is spondyloarthropathies.
> I have found the message boards at spondylitis.org to be very helpful.
> There are a lot of people there who have experience with both PA and
> AS and I find them to be very helpful and sympathetic.
> Good luck to you,
> Charlene
>