For those who have Psoriatic Arthritis

Hello everybody,
Here is a very old paradox which I heard again on the
radio this morning and still I don't get it.
Three friends have a meal at a restaurant and the bill
amounts to $30. They each pay $10 but a while later
the waiter comes back, says the cashier has made a
mistake and the bill is only $25, so he gives them
back $5.
As this is a big hard to divide they each keep $1 and
give the other $2 as tip to the waiter.
Now each of them has paid $9 which makes $27 together.
They gave $2 to the waiter and that adds up to $29.
Where is the other dollar?
Have a nice time.
Margaretha.
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Inicia tu navegacion en http://www.ya.com

his certificates on the wall, Is he good-looking....what do you go by? Just
a little question....I was just wondering how you classify they?
By real docotr I mean, NOT an intern, resident, nurse clinician, ect. I mean
an orthopedic surgeon, rheumatologist, or someone like that who is fully
certified on the medical board and has gone through the medical training AND
COMPLETED IT to become a doctor.
Angela

Todd,

I have applied for SS Disability and have also been turned down two times. I have an attorney who specializes in these appeals. She said being turned down twice is the norm. I have two doctor's appointments in July made by Social Security to verify my disability. I hope they aren't shams like the functional capacity test by my disability insurance. I was turned down by them, but will reapply if my claim is approved by Social Security. It is hard for me to accept that I have gotten to the point where I can't work. I keep hoping for a remission. I was treated terribly by the insurance company. They acted like I was just lazy. My employer was no help either. That was really hard to take after 12 years of dedicated service. I was branch manager of a bank. I hope that the doctor they are sending me to knows something about PA. Good luck at your hearing. Let me know how it turns out.

Allayne

Hi Jim
Good question. It had me searching all the medical books. I turned up zero
on male/female, except ratios. However, I do not think it is as easy at
that. Much depends on what form, within PA you have. For example a man could
have just psoriasis and peripheral arthritis. Another man could have
psoriasis with ankylosing spodyloarthritis. Both have PA, both could be the
exact same age. Patient A might have a low pain threshold, patient B a high
pain threshold. A might have stress for his trigger, B infections. A could
be a depressed person, B could be a happy person and so on.
Because humans are individuals, seems we all react diversely, hence no real
concrete study!
Love and God Bless
Gillian
Selfish persons are incapable of loving others, but they are not capable of
loving themselves either.

Hi New Jersey
Yes proteins can cause disease and cancers, but they usually mean the blood
proteins. For example Rheumatoid factor is sometimes described as a blood
protein. These blood proteins are what we inherit from out set of parents
and forefathers genes.
To my knowledge you cannot drink the blood protein to predispose you to Lung
Cancer! They know that genes inherited, give people a predisposition to
certain conditions. However they do not know what the trigger is! For
example my Father and his Brother BOTH died from the exact same malignant
tumour of the lung and the exact same age! My father smoked, the Uncle did
not! Whatever the trigger was, they were both exposed.
Now with the latest unravelling of genes in humans, they hope to find out
what gene or combinations of genes are responsible for Cancer. Then by
keeping a close watch on these patients predisposed to this condition, they
should be able to find the trigger. We all have cancer, but something has to
trigger the cells to multiply!
Love and God Bless
Gillian
Selfish persons are incapable of loving others, but they are not capable of
loving themselves either.

I was reading about this "Gene" therapy and they say that certain proteins
can cause diseases and cancers.... This actually shocked me when I first
read it because I'm 25 and I was lifting weights alot before I got this
crap....And I was taking all this protein supplements and protein
shakes......And it was like immediately after I started taking that
crap...(well like maybe a month into starting it) , THat I started to get
this arthritis and psoriasis....and nobody in my family history has this
crap....So is it possible that maybe I got it from that?? Because I learned
recently that they get that protein from animals and stuff and mix it all up
into a shake... Shoot....now i'm gonna be thinking about this forever.....

Hi Michele
Any chance you could send some Irish Sausages to Bunny in Vegas? She was
trying to make "Toad in the Hole", an English recipe, but locating REAL
sausages was tough!
I love sausages, although they are HIGH in cholesterol. That is why I have
to refrain from them. Now and again I will buy two, one for me and one for
Hermes! Sausages on Sunday, well they were made to go together!
Yes the psychology, if you know you are having a TREAT on Sunday, it makes
eating what restrictive foods you are on easier. I can eat this porridge
because on Sunday I can have a fried breakfast. Then as your body becomes
accustomed to the bland diet, Sunday drifts into the past and before you
know it you have lost weight, your arthritis is better and you like me just
sit here and say, "Why did I not do this BEFORE?"
Love and God Bless
Gillian
Selfish persons are incapable of loving others, but they are not capable of
loving themselves either.

I hesitate to ask this question for fear someone might get the wrong
impression, but I haven't been able to find any info on this subject
elsewhere.
Has anyone ever read anything on a difference of PA symptoms between males
and females? Is there a tendency for one group to have certain, more
aggressive symptoms that effect the other group less?
I know, after visiting this list for years (75 members) that PA symptoms and
medication effectiveness vary greatly in a lot of cases. I'm just wondering
if there's any medical notes reflecting differences between sexes, or for
that matter...ANY division by group.
Jim

Happiness depends on ourselves. Aristotle

Most folks are about as happy as they make up their minds to be.

Abraham Lincoln

Kindness gives birth to kindness. Sophocles

Life's most urgent question is: What are you doing for others?

Martin Luther King Jr.

Trust yourself. You know more than you think you do.

Benjamin Spock, M.D.

Start by doing what's necessary, then what's possible and suddenly you are

doing the impossible. St. Francis of Assisi

Example is not the main thing in influencing others. It is the only thing.

Albert Schweitzer

I try to avoid looking forward or backward, and try to keep looking upward.

Charlotte Bronte

If I try to be like him, who will be like me? Yiddish Proverb

You don't just luck into things as much as you'd like to think you do. You build

step by step, whether it's friendships or opportunities. Barbara Bush

A loving heart is always young. French Proverb

At the touch of love, everyone becomes a poet. Plato

A friend is the hope of the heart. Ralph Waldo Emerson

There is no instinct like that of the heart. Lord Byron

Life is not a "brief candle." It is a spendid torch that I want to make burn as

brightly as possible before handing it on to future generations.

George Bernard Shaw

The more faithfully you listen to the voice within you, the better you hear what

is sounding outside of you. Dag Hammarskjold

You have within you right now, everything you need to deal with whatever the

world can throw at you. Brian Tracy

To touch the soul of another human being is to walk on holy ground.

Stephen R. Covey

Chicken Soup for the Single's Soul

How difficult is it to get the doctor to give you a cortizone shot in a joint?
Does he have to have you get an MRI first so he can tell where to give you the
shot? Is it a blind stab and hope for the best? Do you have to be in the x-ray
room with the monitor on that shows the joint while he injects?For the wrist my
ortho doc had me get a MRI and after he looked at it he injected the wrist with
a combo pain killer and cortizone shot. The shot HURTS going in. This was in a
couple years ago.What about a hip joint or an ankle joint. Is it just rotate the
ankle and get a "feel" for the right spot? Can't do that for a hip.Please tell
about your cort shots into a joint.Thank you,Pat B

Hi Karen
Well you could help husband by looking at his diet. Certain food could be
upsetting the system, especially if he is forever 'grazing'. That is the
local colloquiums for eating on the go, rather than taking time out.
Obviously support him, which from what you say in your e-mail you are doing.
Understanding, not questioning and not making a BIG DEAL out of being unable
to open a jar! I could not open a jar today either, had to resort to my
kitchen thingy and felt a fool. However Mom was upstairs so I got away with
it. Nothing worse than having a jar snatched from your hands, to be opened
by your 70 year old Mother! You might also try Evening Primrose Oil, which
has stopped all my swollen joints.
I am about to harness up my Labrador, Hermes and take her for her three mile
walk. If I do not go walking, I get snappy, rude, annoyed and tired, so for
me exercise is ALL important.
[Just keep your fingers crossed that I do not fall over]
Love and God Bless
Gillian
Selfish persons are incapable of loving others, but they are not capable of
loving themselves either.

Hi LeAnn and woof to Blossom; should that be a whine?
I had some photographs back from the developers today. Hermes prancing in
the Town Park, checking out her favourite Bog Hole! That is a large area of
mud.
As Mom says, "You take Hermes out as a Yellow Labrador and she comes back a
Dalmatian!"
Hermes has a white under carriage, with golden fuselage and flashes of white
over her fuselage. Her tail gate is white! Therefore when her back end
wiggles, you get some form of Morse Code, dot, dit, dot dot, dit. I think it
drives the men wild, because she always ends up with one foreign nose where
the sun does not shine.
Actually the photographs show what I think is dog PMT? She does look rather
large in that area that was removed. Now she looks real thin. Perhaps they
do still have some form of mating cycle?
If ONLY Hermes could talk, we could have some cracking conversations.
LeAnn glad that you no longer feel you need the anti depressants. Thankfully
God blessed me by not giving me depression, probably because he knows I
could not handle it. However the drugs have there place and time, but
obviously the time is not now.
Happy and positive, because life is GREAT! Now do not get carried away on
these diet pills! My Cousin was on them and after two days of me, bitterly
complained that her jaws ached! I said, "Well it is not from the want of
chewing, that is a fact!" All she ever did was pop these diet pills and as
for her breakfast, some form of pink mush in a liquidizer? The ache came
from the laughter, which was not healthy because she had NO laughter lines
until I arrived! LeAnn all you can do is eat a sensible diet, cut out the
junk and go for long walks with Blossom.
The town park here is in full bloom, all those roses to sniff. However I
think the local Police are starting to watch me very closely, seems I am
getting addicted to rose sent!
Earth is a wonderful play ground, just make sure you enjoy it.
Next week I shall be going swimming with Hermes. Up until now I have stayed
on dry land, no doubt Hermes thinks I cannot swim. I cannot wait for her
reaction, should be a scream!
Love and God Bless
Gillian
Selfish persons are incapable of loving others, but they are not capable of
loving themselves either.

Hi Charise
My deepest sympathy on the passing of your Grandpa.
Thank you also for being honest and stating that you are having a 'stress
flare'.
While it is stressful when we loose a loved one, you must remember Grandpa
has got to a better place. You might feel that you have lost him forever,
but really he is and will always be part of you. I am positive that as you
we growing up, Grandpa left his unique mark on you and you will always have
those memories. Therefore he is with you and will always be with you.
Personally I always talk about my relatives, as if they are still with me,
which they are. Mom is also a believer that we keep them alive. Just
yesterday we visited my father grave. Dad was a keen Bee Keeper, so it was
not that surprising to locate many Honey Bees on the plants that cover his
grave. Odd though because the other graves were sparse of bees. Before my
father died we did discuss his funeral arrangements. He wanted to be
interned in the Town Cemetery, even though we resided in a different Parish.
Curiosity got the better of me so I asked him why? I can see his face now as
he said, "Well because I know I will always have someone to talk too?" This
threw me, then he added, "Your Aunt Pidgie always visits the Cemetery on a
Sunday afternoon and talks to the deceased members of the family! I will
never be alone!"
Now wherever Grandpa is, do you think he is happy knowing that his demise
brought out a stress flare in your condition? I do not think so. So for his
sake, be brave, accept that he has gone, but gone to a better life.
Love and God Bless
Gillian
Selfish persons are incapable of loving others, but they are not capable of
loving themselves either.

Alison -
I also have the tendonitis type of PA. It will hit suddenly -
like someone stabbed me with a red hot ice pick. Sometimes that spot
will diminish and go away after about 6-10 YEARS. I have a new
rheumy and am still trying to explain to him that my joints seem ok
(except for the OA) and that it is the ligaments and tendons that are
the problem.
Diane

I don't know where to start. My husband is 37 and has had PA for
about 8 years now. He has not done medication until this past year.
I should say he reluctantly agreed to take medication. He takes
Vioxx and MTX. They seemed to work for awhile, but now the swelling
in his fingers is AWFUL. The doctor wants him to take Enbrel now.
He seems to be having a bad flare-up (worse than usual) and I believe
its stress related, in part. He is always going nonstop and works
full time and also just finished 4 years of law school (going
nights). He is now studying for the bar while continuing to work but
is suffering terribly. He suffers quietly and doesn't complain much
at all but I can see the way he moves now and he has trouble doing
the simplest of things (ie opening a jar). I don't know what to do
for him to make him more comfortable. Any suggestions. Also, is any
on this list are active - can you tell me if you feel much better
after exercising. My husband runs alot and says that the day after a
run he always feels much better.
Thanks for listening.
Karen in NJ

Hi Sharon and Wayne, You made the following comment that I would like to respond to: Streptococcal infections are very dangerous if not treated with antibiotics.
They have been implicated in damage to the heart, kidneys and also to play
a role in triggering the immune response. Its possible that arthritic
conditions could be caused by strept but no studies have been done to prove
that. We are all victim to lack of full understanding of diseases and their
causes. We live in south florida and at least we have the sunshine to

I also live in Fl and a few months ago went to see Dr. Frank Vasey at the Univ of South FL in Tampa. He is considered a PA guru- one of three doctors in N. America doing research in PA. Anyway, he does believe strep triggers PA and prescribed Doxycycline. I have only been taking it a few months and my pain level is greatly reduced and I am able to be socially active again. I would suggest you go see him if possible. Luckily, my insurance co covered the visit. Incidentally, i take the doxy in addition to mtx and naprosyn. Good luck and let me know if you decide to go see him.

Also, my mother-in -law is under Hospise care and I was wondering if I could e-mail you privately with a few questions. Take care, Kelly

Hi Alison
Yes I have heard of Oberamaggau (for the Passion Play they do every ten
years), although I must be honest, it would not be my scene. Bruce
Springsteen in concert is more my line.
Tis Irish for step? The wonders of the Internet, you can imagine all kinds
of things and the Craig is mighty!
Strep is short for Streptococcus Bacteria the cause of many illnesses. The
one I am interested in, the throat that looks as if you have eaten Madeira
Cake and the crumbs are stuck. Strep throat, with pus.
Mind you I suppose it could be an "Americanism" even if I use it. Just
because I reside in Ireland, does not mean I am not an American! Mind you I
think the official looking man at Dublin Airport, plus the FBI, CIA, would
not want me. They have no sense of humour whatsoever.
As for kick boxing? Sounds a bit dangerous to me, I would be frightened just
in case my leg fell off! However there are days when I can climb a mountain,
then struggle lifting the tea pot.
I think it all depends on balance. If I maintain an equilibrium throughout
the day, a little bit here and a little bit there, I am able to face most
objects. However if I decided that I am going to climb the mountain, put all
my energy and strength into that single task, I have nothing left to lift
the tea pot.
exercise, and then on and off the feeling of having run a marathon or two<
When people ask me what is my major gripe with PA, or how does it affect me,
this is how I explain.
If you ever did Cross Country Running, usually at School, half way through
the race you would hit what they term the BURN. The arms and legs turn to
lead, you struggle pushing them forward, because you know this is just a
passing phase. You know you will get the second wind. That BURN is for me
PA. The feeling that my body is a lead weight, which I am dragging around. I
even started to ask where I went when I was asleep! I wake in the morning
feeling as if I had completed the Marathon Run?
This has something to do with sleep patterns and Fibromylagia, so I wonder
if you have this Fibromylagia?
That is a misconception. My Grandmother had arthritis, Osteroarthritis,
which did affect her joints. Mind you she was 94, just wore her joints out.
I have friends who have Lupus, this is a systemic form of arthritis, there
joints are fine, but their kidneys are the problem. Originally PA stood for
Psoriatic Arthropathy- any disease or disorder involving a joint. Joints are
supported by muscles and tendons, so if they are diseased, the joint becomes
unstable. The Tent Pole and Guide Ropes. If the guide ropes are not equal,
not secure, than the tent will collapse. If the one guide rope snaps, the
tent pole will learn in one direction and so on. The arthritis develops
because the joint/tent becomes unstable, due to weakness of the
muscles/tendons, guide ropes.
The second thing I learned about my body, I have atrophy! That is wasting
away of my muscles. I think I have managed to stop it at waist level, but
spending months in bed, then in a wheelchair unable to walk, will cause your
muscles to waste. That is why exercise is very important. I have tried to
regain those muscles, but it just does not work that way! Once they have
gone, they have gone.
I hope that helps?
Love and God Bless
Gillian
The biggest disease today is not leprosy or tuberculosis, but rather the
feeling of being unwanted.

I am the same way--- pain and sometimes swelling in the tendons (chronic
swelling in the ankles) but NO joint involvement to speak of....and no
damage showing in xrays over the past 10 years. But often feeling like I
just ran a marathon or played Monday Night Football the day before, even
when I may not have done much of anything. On my good days (with meds) I
can play tennis or even volleyball, but I pay for it the next few days
after. It's maddening, but I guess we're fortunate in that three is not
(yet) any damage to the actual joints, huh?
MikeD

I'm catching up on 2 weeks of PA news (haven't even been on holiday - just
incredibly busy), so sorry if some of these are things that you've all
forgotten about by now ... Am actually off on holiday next week, so will
then have lots to catch up on. I'm off to Oberamaggau (for the Passion Play
they do every ten years), if anyone has ever heard of it?
First, what is "strep"? I've asked this question before, and not had an
answer, and it seems to get mentioned quite regularly on this site. Thought
it was an "Americanism" (I'm from UK), but Gillian was using it too. Please
can someone tell me!!
Second, Kelly H said "I think that sometimes I can't reconcile the me that
still takes kickbox 4 times a week with the me that can't carry more than 1
grocery bag at a time or who can't pick a pot up off of the stove because my
medication is wearing off. Does anyone else have this feeling??????".
I can so identify with this! One day I'm playing tennis, or working really
long days travelling around the country (or overseas), and the next I'm
being completely pathetic and asking people to help me with the smallest of
tasks. I often think that they must think I'm a bit of a fraud.
Third, Jaynie said "tendon pain/damage has been the bigger problem for me".
This is me too! I have little joint pain, and nothing visible, but my
tendons are the problem, with a fairly permanent feeling of having done a
little bit too much exercise, and then on and off the feeling of having run
a marathon or two. When diagnosed, I didn't understand how I could have PA
because I always thought arthritis meant just joints, and because the "five
types of PA" don't seem to include one which is just or mainly tendons.

Hi llene
I am the complete opposite. I am fine with my own appearance, but it drives
other members of my family deranged. Told you I was odd!
As for
comments "you just have to suck it up and go on," "just get over it," <
Well as the saying goes, "You can choose your friends, but not your family!"
Go to Publisher, makes up a sign saying that, Big and Bold then stick it on
the living room door, they will soon get the message.
middle age, I greve for the
years lost to pain and limitations<
Well I am the same, thought my middle aged was going to be excellent, after
all "Life begins at 40!", providing it is not all over at 30!
Well llene you at least have two sons, more than I have, plus a husband,
more than I have. So you have an obnoxious daughter-in-law, well you cannot
choose your sons partner.
Honest it could be worse. You could be all alone in the world!
Love and God Bless
Gillian
The biggest disease today is not leprosy or tuberculosis, but rather the
feeling of being unwanted.

I think it was Dianne....which blood test confirmed your pa???????
Jayne

Kelly,
I find nothing wrong with the name Patty. Peppermint brings to mind
the Girl Scout Mint cookies I have sitting in the freezer calling my
name. ROFL Pat B

About 15-20 years ago my doctor gave me Pneumovax. I have had
pneumonia about 6-8 times and had just gotten over another bout.
Worked great. It is supposed to protect against 90% of the
pneumonias. Have not had it since.

I haven't discussed this with my doctor yet. I think I already know
the answer and am playing the ostrich. But I'm getting ready to
start MTX (as I've stated a million times) and I smoke about half a
pack a day. Am I going to told to quit? I mean, I know I need to
quit, but I haven't been able to up to this point. It's my only
vise. Great, guess I have to join another group. Grrrr.....
Kelly W.

Before this long message, a question: what's Ultravate with Dovonex?
Sounds like Temovate and Dovonex. Am I right? Sounds like a heck of a combo.
Hello all. I've been lurking for a while and have read the archives back
to Jan 1, 2000 or so. When I joined the list, I wasn't diagnosed yet, but
two weeks ago the rheumatologist did diagnose me with PA. I've had the P
for...heck...I don't really know...15 or more years (I'm 27) and have had
some rounds of PA for almost 9 years, but undiagnosed.
I initially had PA show up suddenly back in '91 during the first few months
of what turned out to be 7 years in college. I woke up one morning and
multiple joints in my fingers and toes were very swollen. I couldn't open
my hands all the way nor could I put them into my jean pockets to get out
my keys. I gave up years of bowling 3x or more a week pretty fast. The
doc tested me out for gout and rheumatoid arthritis but all was negative.
He prescribed ibuprophen and about a year and a half later my pain and
swelling were gone leaving behind only a small amount of joint deformation
in my left hand.
It was a couple of years or so later before a dermatologist told me there
was an arthritis that can go with psoriasis after I happened to mention my
mysterious finger and toe problem. "Wow," I thought, and left it at that.
In '96 or so, I woke up one morning to severe, shooting chest pains between
the ribs on the left side. Tests and xrays showed nothing, but I was given
550mg naproxen sodium 2x a day which helped (no surprise now since that is
still the most effective NSAID for me). The pain got much better but never
really left since then.
Today, the worst parts are my chest along the brest bone, my upper back at
the neck, and my right foot. For the last several months I've had many
days where I was pretty disabled by my foot and every movement of my arms
or chest could bring on shrieking pain. That was with 1100mg/day naproxen
sodium.
However, just yesterday, I had my fourth dose so far of Enbrel since my
insurance co. was good enough to cover it even WITH a clearly stated
diagnosis of PA. My month's worth of Enbrel costs me $15. Can't beat that
with a stick. I can't say that my skin has improved much, though I think
I'm seeing that the topicals are enhanced by it. My PA has improved
dramatically. I could tell by the second day. The pain is still there,
but it's minor now. I've had zero side effects so far, including no
irritation at the injection site. I generally just take one of my naproxen
sodiums in the morning now (550mg) unless its the day before my shot
because I'm usually starting to hurt again by then.
Regarding recent posts about PA and diet, here's all I can say: I'm a
low-carb follower. While it has single-handedly cured all my other
problems, it has neither helped nor worsened my P or PA. I no longer
experience heartburn 24 hours a day (near-zero heartburn), my allergies are
gone, my hypoglycemia is 100% under control, 60 pounds are lost and aren't
about to find me again, but the P and PA have continued their course in
spite of changing my diet completely.
I see from this list that I'm not alone and my PA is not as bad as I
thought it was. It can obviously be much worse, as it is for many of you
out there. Sheer determination and Enbrel are allowing me to work at
becoming an avid cyclist (I've ridden about 400 miles since the end of
April). I started riding again before Enbrel because it helped with the
pain, but the two together are wonderful.
Ok, this is too long. I'll stop now....just wanted to introduce myself.
--Jay Vercellotti

Charise,
When your brother got strep did you go in and get tested? Coming from
a large family my mother had to do battle with one or two of us
having strep as if it went round and round in the family. When she
started taking ALL of us in to be tested she found that there are
CARRIERS of the strep with NO symptoms. We pitched fits having to go
in when feeling fine but she finally got the strep knocked out by
treating the carriers as well as the ones suffering the strep full
blown. Believe me having to change into a softball uniform going down
the interstate in a mustang is no fun when rushing from the hospital
for a throat swab back to the game!!!
Pat B

Hi all,
I have watched the thread about strep with interest. I have never
had a strep infection as far as I know. My brother used to get strep
throat a couple or three times a year and I got nothing. On the
other hand...I keep getting told by the docs that autoimmune
problems are not genetic. That is why I can go back at least four
generations on my maternal side and show p and a. My mom, her
sister, their mom, her dad, a maternal great grandmother and
others with arthritis and a negative rheumatoid factor w/psoriasis.
just interesting information...my rheumy just shakes his head when
I add another one to the list of family members with the same
problems.
LOL (else I would have to cry),
Charise

my arthritis started about twenty years ago in feet. has also spread
to hands. i also have pain in my back which im wondering is also the
pa. recently the tips of my inside elbow joints feel as if they are
bruised all the time. is this also the pa??

Hi all, its been a while, but wanted you all to know that my R. knee
surgery,(cleanout) went well on wednesday. I was walking w\o
crutches by friday. Today, I am pain free, and walking w\o a limp for
the first time in two yrs. Funny, but the rest of me feels 90% pain
free since the surgery, wrists, neck, toes, hands. Best of luck to
you all, Ill keep reading!

Chuck- welcome and thanks for giving details on your current meds too. Your
current dose is a moderate one at 20 mg. I personally was on 50 mg injected
once a week for around two years. If it is helping you at 20 mg, chances are
good that at a higher dose, you may well get a complete remission- at least
for a while. If I were you, I would push the doc to increase the dose up by
ten mg every six weeks until you find the dose that works for your body. It
usually takes a full six weeks for the new dose to actually take effect- so
switching to a higher dose more quickly would be foolish. I recommend
getting all you can out of methotrexate before switching to another drug. In
my experience all drugs are self-limiting in their effectiveness after a
while. Using each medication - as long as it is working (and I would not
consider it working for you currently by the way) for as long as you can.
Your dose of methotrexate needs to be increased to the point where you are
not getting anymore joint deterioration and pain. It sounds like you are
headed in that direction- but are not there yet with the dose of 20 mg. Push
that doc to up the dose every six weeks to see how well you can get on the
metho. Don't forget to ask for a prescription for Zofran for nausea too. It
works excellently for chemo induced nausea. You may also want to ask about
taking folic acid six days a week too. This would decrease your chances of
bone marrow suppression (low rbc counts) , mouth sores, and decrease the
amount of fatigue you inevitably feel after the shot/pills. 1 mg of folic
acid a day for six days is quite a common dose. Again- ask doc about this
too.
Good luck to you- and hope all this helps-
Michelle
group founder

Hello everyone. I am in the very early stages of finding out about
PA. I have recently found out that I have some sort of arthritis in
all of the joints of my hands and feet. I also know that I have
arthritis in my neck and lower back. I have an appt. with a
rheumatologist next week to determine what kind of arthritis this is
but in reading about PA it sounds as tho' this might fit (ridges on
my fingernails and psoriasis on my scalp). But osteoarthritis also
fits in so ways also. Is it possible for PA and OA to overlap? I am
getting very anxious to find out what this demon is that has struck
me. Some mornings I can hardly make it to the kitchen my feet hurt
so badly and when I get there I can't hold my coffee cup. Thanks for
listening to me and I will be interested to learn more from you.
[Moderator's note: Welcome aboard scdena22! I hope you find much useful
information and support here. Ron]

Hello Everyone!
I'm so glad I found this group! I've had psoriasis for 5+ years, and
was diagnosed with Fibromyalgia and PA three years ago. My Rheumy
isn't completely convinced I have PA since I have little inflammation
and this is one of the criteria she uses to diagnose it, but from
everything I've been reading, I feel sure I have it. I have joint,
muscle and chest wall pain, spasms, psoriatic toe and finger nails,
Sjorgen's Syndrome, TMJ and chronic spastic colon, sinusitis and
Achilles Tendonitis. I have taken MTX in the past with only slight
improvement with the PA, but lots of improvement with the psoriasis.
Now I take Hydrocodone for pain, Baclofen for muscle spasms and
Remeron for sleep, plus I take medication for high blood pressure and
cholesterol. I tried Enbrel and had severe injection site reactions
so I had to stop. Now my Rheumy wants me to try Remicade. Can
anyone share the side effects of Remicade? Does anyone have restless
legs syndrome (muscle spasms) all over (not just the legs)? This
started happening to me within the last few weeks. Also, does anyone
have problems with pain in the rib cage...this seems to have gotten
worse for me during the past few weeks too? I sure appreciate the
wealth of information from this group and look forward to sharing
experiences with you.
SusanB

Y'all:
I've been diagnosed w/ PA in Feb 2002. Going from bad to worse
pretty darn quickly. I'm on vioxx, MTX and folic acid...no magic
bullet so far. My RA doc wants me to go on Enbrel or Remicade. As
we all know, the FDA has approved Enbrel for PA, but any new Enbrel
users will have to wait until the end of this year. The FDA has not
approved Remicade for PA, but has for RA. As a result, my insurance
(United Healthcare) won't authorize Remicade for my usage. If I want
Remicade, I'll have to pay for it...but 10k for the first three
treatments?!! How have other PA-ers gotten Remicade? Is there
something I'm missing?
thanks and later,
[Meghan's Moderator Note: Sorry to hear about your recent diagnosis, but welcome
to the group! Would your doctor submit a letter of medical necessity to the
insurance company? How are you covered- individual policy or group policy
through a job? Have you talked to the Benefits Administrator at your work or
your spouse's work? You'll have to start doing a lot of phone calls to see if
there is a way to have them reconsider. Best wishes, Meghan]

It is amazing what a little general publicity on PA can do. Since the
publication of my recent interview and photograph in our regional newspaper,
people have been talking to me about it. The most common comment I receive is "
I did not know you had developed it [PA] so early (39/40) " My aunt and uncle
who are my closest next of kin even made this comment. They all thought it was
similar to osteoarthritis and did not realize the degeneration was caused by a
disease. People are asking how do I cope with the pain because we never see you
complain and you look so healthy otherwise, apart from not being able to walk
without crutches. A copy of the article has been placed on the notice board of
the community hall in my retirement village, and is also drawing a lot of
interest among the residents.
Regards, Gordon
.

I have been having some vision problems in the left eye so I saw my optometrist
today as I wear glasses for astigmitism and reading. He confirmed that the left
eye needs a further correcting lense due to the start of a cataract - that's all
I need !! Also the eye pressures (I have marginal glaucoma) were not the best.
No panics at this stage, and I am due for my annual examination by my eye
specialist in October so we will wait till then to see what he will do. Whilst
with the optometrist, we discussed reading glasses and computers, and the
bifocals I use are not suitable for computers. I am going to have an extra pair
of pure reading glasses, where the focus in the top half is set at arms length,
for the computer screen, and the bottom half set at normal reading length for
glancing down at documents.
Thursday, I see the gastroenterologist for the results of the liver biopsy,
fingers crossed.
Could do with some support here.
Regards, Gordon

Susan B,
I don't have restless leg syndrome but I do have muscle spasms in my hands.
This all occurred after I was diagnosed with carpal tunnel syndrome. I had
surgery in my right hand and it is feelng better (the arthritis is still bugging
though) but I am stll havng the muscle spasms in both hands. Makes it hard to
type, grasp things, etc. It seems like things are always slipping through my
fingers. Anyway I have PA and fibromyalgia too. I am taking Enbrel, methodone
for pain, ambien to sleep, flexeril when needed for muscle spasms and neurontin
every night (it is supposed to be for pain but I really notice no difference).
You might want to ask your doctor about putting you on neurontin. It is
supposed to work well for restless leg syndrome and help with sleep too. I
should probably be on a higher dose but it makes me feel too loopy.
Leslie

Anyone else have psoriatic arthritis that affects the eyes and heart? I
finally found a link that talks about this...I have had heart and eye
problems for the last 3 years... burning of the eyes and heart enlargement..
here's the link :
http://www.focusonarthritis.com/script/main/art.asp?li=MNI&articlekey=460
"Psoriatic arthritis is a systemic rheumatic disease that can also cause
inflammation in the eyes, heart, lungs, and kidneys. "
i wonder if there's anything that could be done for this eye burning
sensation when i wake up... burns like crazy...
This also confuses me because alot of published reports say that this
disease does not affect internal organs... i dont know who to believe..
mike

I have been using Betamethasone Dipropionate cream on my scalp for
years & have only a minimal amount of P remaining. (a little behind
my ear and a few small spots on my elbows)
What's nice about this cream, is that it can be used anytime, not
just when washing your hair and it is soothing when your scalp is raw
or itchy. It can also be used for P on other parts of the body,
except very close to the eyes. (it is used sparingly.)
Above all, keep your hair & scalp clean!
Tammy

Hi all,
I just went to my rheumatologist today. I am in a major flare and have my
left knee
and both ankles swollen up with the arthritis. The tendons cartilage is also
disintegrating he said. That is the crunching and grinding noise you can
hear from across the room if I bend the knee at all. Also my sacroiliac is
completely inflamed on both sides. Only have a bit of psoriasis on the hands
and in the ears.
The weirdest and scariest news was from the neurologist. She said that the
pin prick exam she did revealed significant neuropathy in my lower limbs from
the knees down. This can happen to people who have had Sjogrens for many
years, she told me. ( I have had it at least ten). She explained that my
immune system was attacking the nerves and that is why they were not working
and responding to her exam. IN order to stop the progression of this I would
need transfusions of IV gammaglobulins she told me.
Has anyone else heard of this or had this happen to them? Any info would be
appreciated.
Michelle
group founder

The thing that helped me most was getting on methotrexate. My scalp
was one big scab and I already have skin sensitives and allergies to
chemicals in most shampoos. I get the best shampoo I can afford for
those with skin sensitivities. I have a local woman who makes her
own versions but does not sell through the mail.
I tried about 30 shampoos and other products. Some even made it
worse. My dermatologist suggested I shave my head and sit out in the
sun (I'm a woman); he was "joking" of course!
When trying something new, try to get samples. I had to throw out
about $100 worth of shampoos.
Suzy

hi scott,
my dad can sit down, turn the braves(or any game) on and
fall immediately to sleep! and lord forbid you try to turn
the channel, he wakes straight up! my mom used to get so
aggravated with him. esp. since she used to listen to the
games in the old days when the braves weren't even on tv.
b.t.t.(before ted turner!) so maybe, if you don't take
any sleep aids, just turn on the game, maybe skip carey
and crew will lull you to sleep!
susan in ohio

Ok, so I'm using Clobetasol Cream now for the P on other parts of my
body. Are you saying I can use this on my scalp too? Do you massage
it into (all over) your scalp...after you wash it, before you dry
your hair? Does it make your hair oily? (I wash my hair every day).
Thanks,
SusanB

Dear mike and fellow PA friends
I was wondering aswell as I read about the link on focusonarthitis. PA is
systematic and should because of that not be underestimated. This is the
reason why I react. Few months ago I asked in this email group about lung
problems, PA connection and MTX medication. I had one reaction from Michelle
stating that MTX and lung problems are to/could be linked or at least to let
medical tests having done, because that MTX is toxic. I thanked her for that
reaction. But I have since quiet some time more problems with my lungs than
before PA was diagnosed. So when I saw the link on focusarthritis I wondered
aswell. I think there is a relation between my lung problems and PA. This
because weather (moisture and temperature) influences my breathing. Also my
heart is larger than normal, acc. to the doctors. I also have conjunctivitis
for my eyes are very red at bad days/flares.
What I can imagine is the auto immune disabilities in heart, lung, other
organs and PA cases. I am not a doctor to see logical links here, but I
would just be as interested as you to find out the truth.
SO, IS THERE SOMEONE WHO CAN EXPLAIN THE LINK/COMBINATION OF PA AND OTHER
FAILURE ON INTERNAL ORGANS.
It would be very nice and helpful to hear of. Thanks anyone for info. And
Mike good health to you.
Anne Heijnsdijk from The Netherlands.

Hi all,
I have been on Kineret for five months. I have been using from the beginning
a natural cream called " A R N I C A G E L " I got it in the health food
store and I have seen it in the natural supplement section at the pharmacy
also. The arnica gel numbs my skin up. I put it on five minutes before the
shot, then I wipe away the excess with a clean tissue and inject away! It is
wonderful, inexpensive stuff, and it kept me from getting any reaction
whatsoever from the Kineret shot. Apparently there have been a few people
who have actually stopped the shots due to severe injection site reactions!!
They did not know about Arnica gel!!
Good Luck with the Arnica- I am sure you will find it- it is quite a commonly
used ointment for bruises or sore spots, etc...
Michelle
group founder

Just to support Michelle's enthusiasm for Arnica Gel, it does really
help with minor stuff and I could easily seeing it help for the shots
too. If you have a healthfood store, ask for a clerk to help you find
the pain relief lotions. Try to find the ones with the most arnica.
-Meghan

has anyone tried Bromelain - also the cream called Boswella.
Also can someone help me understand about herbs such as ginseng and others to
boost our immune system, I'm confused on which is good and bad.
I'm also taking seledium, green tea, Vit E - b-complx. -
I was told by a friend this week that her Dad takes odor free Garlic and
works out in the garden and the mostqitoes don't even bother him, they were
eating her up.
he claims they use to bother him but not anymore.
I've had my 2nd treatment of Remicade and also on a small dose of MTX.
6 ultracet's a day and 20mg of Bextra, just wasn't getting it. had a shot of
corti.
last Friday. so Again I'm checking out herbs, to try and replace the
ultracet and bextra.
Thanks for anyone's help.
Jan in Dothan, AL
[Meghan's Moderator Note: Stay AWAY from herbs that boost your immune system.
With an autoimmune illness such as PA and RA, we do not want our immune systems
more active. All of the drugs that HELP arthritis lower the immune system and
they work BECAUSE they lower the immune system. An autoimmune disease is where
the immune system is attacking the host body, ie our immune systems are
attacking our joints and connective tissues. Vitamin E, vitamin C green tea,
b-vitamins, selenium are all ok in moderation and regularly. Things to stay away
from are ginsing, echinacea, golden seal, those kinds of things. Hope this helps
some.]

Just to clarify Glucosamine and Chrondroitin are actually very
helpful for OA- osteoarthritis because that is resulting in bone
destruction of the joint. Rheumatology research is beginning to show
hard evidance that they does help that.
BUT I agree they do hardly anything for PA. Unless you have actual
bone destruction going on, glucosamine and chrondroitin are just a
waste of money.
--- In PsoriaticArthritis@y..., Lawrence Lichtenfeld

your sentiments ;-) -Ron]

I used Imuran quite successfully for two and a half years by itself after I
developed methotrexate toxicity from being on such a high dose (50 mg by IM
shot once a week) of methotrexate for so long- over two years. The dose of
Imuran I was on was two hundred milligrams - 100 in am and 100 in pm. The
side effect I noticed was queasiness and lessened appetite at first. Being
over 50 lbs overweight I welcomed this side effect. After a while though, it
became a problem not being able to eat any dinners without getting really
green around the gills, so the doctor gave me a prescription for occasional
use of Compazine.
Once the Imuran began not being enough on it's own and I began flaring
through it, the doc added in Arava - 1 pill in per day along with the Imuran.
After two months time we tried to taper off just the Imuran and the
psoriasis on my hands started flaring on my entire body like gangbusters
after just a few days, so I called the rheumy and told him that I felt we
should rescind the agreement we had made at my visit the past week to taper
off the Imuran. He agreed, and so I stayed on both the Imuran and Arava.
Hope this remembrance of my history with Imuran helps Gordon and fellow
PA'ers considering using Imuran.
Michelle
group founder

This is more of a question of curiosity I guess. My PA sypmtoms
started showing up within just a few months after having surgery due
to a nasty case of diverticulitis nearly two years ago. I ended up
having a colon resection because the infection was so bad. Within
just a few months of the surgery I started noticing the swelling in
my hands and feet. Since then it has continued to progress. Do any
of you have a history of colon or stomach problems which preceded the
PA? I've also had acid reflux disease which I've been under
treatment for for the past three years. I was checked for Crohn's
when I was in the hospital which came out negative.
Mark Kelley

I am interested in boswella cream too. Is that something to stay
away from? A friend of mine used it for swelling arthritic knees and
it was amazingly helpful.

Hello Group!
I am new to this and I have a few questions.
1) I have such a complicated health history that I have trouble
getting people to agree to talk to me and those that do get confused
about the so many conflicting parts.
Any ideas on the controlled information flow versus allowing the Drs.
full access to what they _actually_ need?
2)I have a family history of psoriasis and have only had skin lesions
for 4 years. And have only had arthritis in my feet for 1.5 years.
The pain started when I went rollerblading and liked the one hour in
the park so much I did 7 miles on the street one day. Ooops!!
Right now some homeopathic stufff seems to help the foot pain. I
wonder if that is working (sorta) and I can function if that means I
am at the level of staying away from MTX etc. and stick with the
folica and the vitamins and the gluco chond MSM?
3) What is the deal about the antibiotic treatment for psoriasis? I
don't really understand that- where is some resource explaination?
I had a staph infection in the hospital and the penecillin lead to me
having a horribly disabling case of leaky gut syndrome. One doc gave
me what another MD described as unthinkable doses of diflucan and
cipro along with vitamins and a protein diet and things have been a
lot better.
Does this relate to the psoriasis?
4)Does chiropractic help with this any?
I was in several collisons while ill and have been under chiropractic
for a year and a half with neck pain. Finally an IME just told me
that my neck is in line, but that all my muscles were in spasm and I
need physical therapy or massage therapy. How could the chiropractor
let me suffer for over a year like that?
Please reply to thinkmichael@....
Thank you.
Sincerely,
Mendel
(Michael)
[Meghan's Moderator Note: Welcome to the group Michael! First thing to do is see
a rheumatologist if you haven't already to get a confirmed diagnosis. It sounds
like it is very likely PA. But you should really verify that with a real life
hands-on doctor.
1) On an initial visit, you should list all your previous illnesses and
surgeries and any current symptoms. Especially when seeing a rheumatologist or
internist. From there, you can decide to trim some things off or keep things
brief. Don't leave things off the list though as they can in fact be important.
Sometimes surgeries can trigger arthritis or stomach problems, etc etc.
2) Some people with PA never need to go on stuff like MTX. Yes it's true. But do
be on the look out if you are having new joints flaring, hot joints, joint
swelling etc that isn't going away. If so, it's time to talk to your
rheumatologist. MSM/Chrondroitin/Glucosamine is a waste of money for the most
part for people with PA. It is only effective for actual bone destruction at the
joint. PA tends to be more soft-tissue issues, but not always.
3) Antibiotics are sometimes used for inflammatory arthritis, which PA is. They
are sometimes successful if used early. I'm not sure antibiotics are used for
Psoriasis. Steroid creams and topical ARE used for psoriasis pretty regularly.
4) Sure chiropractic can sometimes really help alleviate pain. ]

HI, I agree with Meghan, plus it is a good idea to ALWAYS check with
your Dr. before taking anything, especially when you're taking
prescribed medications.
SusanB
[Meghan's Moderator Note: Just wanted to add as always take all your vitamins
and minerals in standard dosages, but take them REGULARLY. That's is the best
choice I believe.]

immune system. With an autoimmune illness such as PA and RA, we do
not want our immune systems more active. All of the drugs that HELP
arthritis lower the immune system and they work BECAUSE they lower
the immune system. An autoimmune disease is where the immune system
is attacking the host body, ie our immune systems are attacking our
joints and connective tissues. Vitamin E, vitamin C green tea, b-
vitamins, selenium are all ok in moderation and regularly. Things to
stay away from are ginsing, echinacea, golden seal, those kinds of
things. Hope this helps some.]

Even wrestling with the adverse results of my recent liver biopsy, how can I
remain depressed when early spring is in the air. After a mild, dry winter,
with endless warm, clear and sunny days, spring is arriving. My native shrubs
are full of flower spikes and numerous varieties of honeyeater birds are sipping
on the nectar. Today a gardener from Home Assist (another government service
for the disabled) came and cleaned up my garden beds and pruned the shrubs, and
then laid sugar cane mulch thickly on the beds. Mingled with the normal garden
perfume, is the sweet smell of the mulch. How can one think of pain and
problems in such surroundings.
I thought I would share this with you. It reminds me that there is still much
enjoyment in the simple things of life.
Regards, Gordon

Hello Mike and others taking supplements and herbs,
Mike offers a mixed bag of herbs and supplements.
Borage oil, evening primrose, flax seed oil and Omega3 oils are all
for inflammation and can sometimes really benefit the one taking
them.
The Arthritis Foundation offers a Supplement Guide, which I have and
encourage everyone to purchase. It is really very good and it is not
anti-supplement:
http://arthritis.org/conditions/SupplementGuide/default.asp
To repeat my moderator note: Stay AWAY from herbs that boost your
immune system. With an autoimmune illness such as PA and RA, we do
not want our immune systems more active. All of the drugs that HELP
arthritis lower the immune system and they work BECAUSE they lower
the immune system. An autoimmune disease is where the immune system
is attacking the host body, ie our immune systems are attacking our
joints and connective tissues. Vitamin E, vitamin C green tea, b-
vitamins, selenium are all ok in moderation and regularly. Things to
stay away from are ginsing, echinacea, golden seal, those kinds of
things.
But regarding Mike's statement about supplements and herbs
counteracting PA treatments, there is in fact evidence that taking
anything, including supplements and herbs to BOOST the immune system
will aggravate autoimmune diseases, including psoriatic arthritis. In
addition, too much folic acid (over 1 mg/day) can negate the effects
of methotrexate. While it is essential to take the folic acid with
MTX, you have to use balance.
As a matter of fact, milk thistle may remove the methotrexate from
the liver and prevent the MTX from being metabolized properly. I was
taking milk thistle daily until I read an article by a local doctor
that milk thistle interferes with the MTX. I think it might be ok to
take the milk thistle a day or two before your next MTX dose, but
defintely don't take it every day.
There are herbs that have been taken off the shelves because they can
kill. I only emphasize this to say that herbs and supplements can be
quite potent and do affect the body. If they didn't do SOMETHING,
most people wouldn't keep taking them.
Hope this helps!
-Meghan
--- In PsoriaticArthritis@y..., Mike Pope <popeatlarge2000@y...
http://www.amazon.com/exec/obidos/ASIN/0895299178/qid=1029259262/sr=1-
1/ref=sr_1_1/102-0211447-7008141

but remember that each one
My husband and I were living in Malaysia, and one day we stopped into
a Chinese medicine store. The herbalist was busy preparing various
concoctions for his patients. On a small square of paper, he was
adding various powders, roots, etc. We asked what he was doing, and
he told us he was preparing medication which was to be boiled like a
tea to drink to treat the flu. I asked if I could buy one, and he
told me no-that I needed a prescription. Later, I learned that many
of these herbs can be very powerful, and that many of our medications
are actually synthesized versions of many of these herbs.
So, we shouldn't treat these herbs lightly!!
Sandy

Is boswellan extract either applied externally or taken in pill form
of any provable benefit for those with PA? A friend has recommended
it and I can't find if it enhances the immune system. Does anyone
know anything or can steer me to something on the internet? Thanks.

Some one may have already answered this but what I read off the Dept. of
Labor website
www. dol.gov
is that you may choose to elect or your company may require you to use your
accrued paid vacation/sick time before making you use unpaid fmla days. My
company told me this as well. I was told though that they would allow me to
use half of my vacation days for vacation (it does say in our employee
handbook that vacation time is meant for rest and relaxation so I hardly
think running around town going to the doctor is rest or relaxation). I
can't complain though. At least they aren't firing me - yet. I just could
use some rest and relaxation. All this mess has got me so high strung. I
really think I am going to have a heart attack sometimes. I doubt it at my
age but it still feels like it. They just have me so stressed and so
worried. So I guess it all depends on your company's policies. I was told
I could use my vacation to go to the dr. I guess once it runs out you are
stuck with unpaid leave. If you had surgery can't you go on short term
disability? I did for my carpal tunnel (3 weeks). Hopes this helps.
take care,
Leslie

PSORIATIC ARTHRITIS NEWS AND VIEWS
VOL. 2 ISSUE 18 August 15, 2002
PSORIATIC ARTHRITIS MEDICAL NEWS
ARTHRITIS IS A LIFE SENTENCE FOR GORDON
GOV'T RECOGNIZES IMPACT OF 9 BN ILLNESS
By Frank Wilkie - and published in the SUNSHINE COAST DAILY on July 24, 2002
To see the photo of Gordon Eliott that accompanied this article, use the

Hi
I was diagnosed with PA a couple of years ago in my left ankle and
have been on the range of Sulphasalazine, MTX, Naprosyn,Vioxx,
Celebrex, Auranofin, Prednisolone.
A few months ago after some different aches and xrays the diagnoses
is now PS.
Two months ago I came off my meds as I needed surgery. As I may need
more surgery I am still off my meds except for Tramadol SR.
My rheumy on Wednesday was okay with me staying off the meds for the
time being as my PA is in a good period.
My confusion is the rhemy said MTX etc is not effective in treating
PS. Considering PS is linked to PA which is linked to P but a side
shoot of PS, 'Sausage Toe' is treated with MTX etc.
Can anyone explain?
[Meghan's Moderator Note: What is PS? Do you mean AS- anklosing spondylitis? PA
is psoriatic arthritis. PA is a spondylarthopathy, so are you sure your doctor
is being clear with you? Spondylarthropathy basically means arthritis of the
spine and this is a common site for arthritis in PA as well. You may need your
doctor to clarify what he/she is talking about. Thanks! ]

Here is a copy of an email I got from another support group. Hope this can help
someone. take care.
hugs,
ali
Subject: Here is an objective test for Fibromyalgia
Maybe this objective test will prove to UNUM and other LTD's that
fibromyalgia is not a "self-reported" or "mental" illness.
http://my.webmd.com/condition_center_content/pnm/article/1673.50952
[if needed, copy and paste to get the whole URL in your browser address line]
It's a review of a study reported in the May issue of the journal
Arthritis & Rheumatism. The journal article, along with this review,
which explains it in plain English, could be submitted along
with the test results.

I wanted to comment to the newbies who have been taking large amounts of
aspirin or ibuprofen/advil for their pain and are not getting the results
they need either.
First of all, you should know that Aspirin and Ibuprofen are NSAIDS- they are
just sold over the counter without a prescription. However, they will do
just as much damage to your unsuspecting stomach as other NSAIDS like
Voltaren, Relafen,
Indomethacin, etc,al.
Might I suggest the following. If your pain is in the minimal to moderate
range, ask your doctor for a prescription for Vioxx. It is one of the new
COX 2 inhibitors and is not as hard on your stomach as other NSAIDs.
However, if you find it bothering your stomach, as it did to mine, you may
need a stomach protectant too. I am currently on Nexium and it works
extremely well- much stronger than Prilosec. Celebrex is for
mild pain and is not rated at all to work for moderate pain, so I would not
bother with trying it myself) Vioxx is rated well for moderate and acute
pain.
If the Vioxx is not enough, I would ask the doctor for his suggestion. There
are other drugs in the NSAID family that are quite strong, and you could take
a separate stomach protectant like Prilosec or Nexium with them and be okay.
Once you get to the point that NSAIDs don't work or there is a medical reason
you cannot take them (say you have a bleeding problem), then you may have to
discuss narcotic pain management with your doctor. Long acting (8-12 hour)
narcotic pain meds are considered to be the less likely to trigger addiction
than the every four hour types, so the drugs called Oxycontin, and MSContin
would be two that your doctor and you might consider trying if you were to go
the narcotic pain reliever route. They last 8-12 hours and will not bother
your stomach at all, unless you do not drink enough fluids in which case you
could get a case of constipation! You must also take into consideration the
timing of the dose of these type of meds- since it is not advisable to drive
on narcotic pain meds.
We are all different, combinations of all the above and others I am sure I
missed discussing are going to be useful to all of us. Unfortunately, we have
to rely on ourselves and be proactive and learn what our options are ahead of
time in order to ask the doctor for what we want and need to get the optimal
quality of life we DESERVE!
Keep on going friends- one day at a time- and right for what you deserve- the
best quality of life that is humanly possible to get! We all deserve it.
God wants it for us
and our families to have as wonderful a life as is possible.
Michelle
Group founder

WEll I got my denial letter in the mail today. ONe of the reasons they say that
I can work is because I can think!!! I'm surprised they don't say that you can
work if you can breathe. My mom wants me to appeal it so I will call the rheumy
monday and see if he can write me a letter to SSDI since he has said that he
will do anything in his power to get me approved. I am trying my best to fight
off depression but if it gets worse I will write back later to vent! Anyway I
know I was curious as to reasons given for denial so I am going to type that
part of my letter verbatim for anyone that it might help. Please write me if
you have any questions, concerns, or suggestions. (this is my second post in
about five minutes and my wrists are already sore....how could I get an office
job with bad wrists? not being able to walk good? not being able to squat, kneal
or crawl at all? being only able to bend a little? and my rheumy saying that I
should not do extended boughts of sitting or standing?)
"We have determined that the condition is not severe enough to preclude work.
We considered the medical and other information, age, educatoin, training, and
work experience in determining how the condition affects the ability to work.
On your application you stated that you are disabled because of Psoriatic
Arthritis. The medical evidence shows that your condition is not severe enough
to be considered disabling. You are able to think, act in your own interest,
communicate, handle your own affairs (side note....this goes against stuff I
said in my narrative), and adjust to ordinary emotional stresses without
significant difficulties. We realize that your condition keeps your from doing
any of your past jobs, but it does not keep you from doing less demanding work.
Based on your age, education, and past work experience, you can do other work.
It has been decided, therefore, that you are not disabled according to the
Social Security Act."
That is all they put as to why. I think my college degree has hampered me far
more than it has helped me and this is just another example of it doing this.
My degree is in communications and it is so broad a degree that it does nothing
for me at all!!!! OK *deep breath* I said I would not vent just now. Anyway
thought you all would like to know. Thanks for being there for me.
Hugs,
Ali

JUST FOUND YOUR WEB-SITE. NOT ENOUGH TIME TO TELL YOU MY STORY
TONIGHT, BUT I WILL TELL IT SOON! I HOPE THAT OTHER SUFFERERS WILL
TAKE STRENGTH FROM IT.
ATLANTIC HIGHWAY- HUDDERSFIELD U.K.

Ali, you got a response from Theresa in Fla. that said:
DON'T GIVE UP Ali, I had idiots who did not follow regulations and consider
proper evidence. So please, get a lawyer if you must.
I whole heartedly agree!! Get a lawyer. They can handle all the paperwork for
you, take the stress off your shoulders and they also know how to word/ respond
to the SS inquiries better than we do. Also your age plays a huge part in this.
If you are 55, SS will come through quite easily, but before age 55, it is much
harder. The younger you are the harder it is. It was the smartest thing I ever
did!
My doctor even had the name of a good SS lawyer for me that his office
recommended. They had worked with him in the past and thought he was
excellent.....and they were right, he was wonderful.
Good luck. Make it easier on yourself and get the lawyer!
Linda in Poulsbo, WA.

I have found that this area is one of the most difficult to clear up.
One of the reasons is that the area is always getting wet and or dirty.
Keeping the psoriasis lesions covered and dry at all times I have found makes
a big difference when it is on or around the hand area. This can mean powder
free rubber gloves at night, saranwrap and scotch tape used to wrap around
the fingers, etc... Use your ingenuity. The creams my doctor usually
prescribes for this area is the strongest one like Psorcon for instance. In
addition, If he sees redness and surmises that there is an infection going
on, he will prescribe an antibiotic orally and also an ointment called
Bactroban to be put on the lesion as well as the Psorcon. Occasionally, the
doctor may even detect a fungal infection, and the cream I was prescribed for
that in addition to the Psorcon was Spectrazole, and oral Diflucan too.
Occasionally, the psoriasis lesions on my hands have gotten stubborn (more so
in these later years) and the doctor has had to resort to injections of
steroids directly into the psoriatic lesions. The pain involved with
injections into the palm/fingers of your hands- I cannot tell you how severe
it is. We must have a zillion nerve neurons in our hands and they all fire
off at once when they are poked with a needle full of steroids in an alcohol
diluent!!
MY FINAL ADVICE IS catch the psoriasis flare of the hands/palms as quick as
you can and treat it with the steroid cream and antibiotic as prescribed for
the ten days or whatever time period the doctor prescribed. If need be then
get thee to the dermatologist to have him/her take the next step. You do not
want to end up in the hospital with a bad infection or worse.
Take care,
Michelle
group founder

hi ali,
i wasn't going to write because the others said what i was
going to say. however, i figured one more show of support
won't hurt. it took 3 years for me to get approved, and
2 denials, but with the help of a good lawyer i was approved.
and without having to go before a judge! i have even been
continued. my lawyer told me last year when i went in to
do the continuance that with ss funds getting low, they aren't
approving as many, and that to get it you have to being
willing to fight. i know it is all overwhelming when you
feel like crap, but it is worth it.
i also saw the article on the chinese herb, take seven steps
and die! can't be too much worse than the russian rullette
we play with all these chemicals!
welcome to all newbies, sorry i haven't posted in a while,
having flare in wrists and fingers.
gordon, i am sorry your liver is messed up, maybe some time
off will clear it up. i liked your article, and you looked
like i thought you would. you now have 2 new residents in
australia, my niece and her husband have arrived in alice
springs and are looking forward to the next three years
in your country.
have a good weekend all
susan in ohio

Leslie here. We don't work for the same company, do we? :-)
I do like my boss is constantly looking over my shoulder. I am the type of
worker who needs little guidance. I know what my job is and what needs to be
done. Whenever I do have questions or the slightest doubt I ask. I have always
felt that it is important to do the job correctly. I don't work well when
someone is constantly looking over my shoulder. It is distracting and
intimidating. He always sneaks up behind me and makes me jump. He has a habit
of starting me. He is the only person who has that effect on me. He'll come
up behind me and not say anything. I'll turn around or look over my shoulder
and he is there. I can't imagine any worse conditions to work in. He is
constantly trying to find fault in everything I do when there is none. If there
is then I admit it. I am only human and everyone makes mistakes. But, it is a
different story when I have co-workers commenting me on how poorly he treats me.
I know it isn't in my head.
I think I will ask my dr. to get me some time off. I am flaring horribly. This
naproxen is doing nothing at all. In fact I feel worse today than I have since
starting enbrel. Scott, Are you getting paid for your 9 weeks off? That's my
only problem. I could afford 2 weeks (that's my vacation) but nothing more than
that - at least consecutively. I think they have to pay you for short tem
disability though. gotta call my dr. on monday. The pain medication is not
working. My morning stiffness never even went away. I haven't felt this badly
in a long time.
A bit of good news though - a friend of mine works for a bank that offers
immediate benefits to part time employees. I would be making a bit less than
what I am earning now but if I could work 30-32 hours a week and still get
insurance, vacation, ect. then it wouldn't be so bad. She works in the
drive-thru and said she can wear pants and trainers (sneakers) everyday. Sounds
good to me. I will definitely look into it.
hugs,
Les

Meghan
Thanks for your note. I understand Spondyloarthropathy is PA of multi
joints including the spine. Spondyarthropathy is of the spine like
AS. Psoriatic Spondyarthropathy is also a sero-negative
spondyarthropathy as with AS. AS is the developement of a bamboo
spine generally smooth in shape. PS is also developement of a bamboo
spine but irregular and jagged in appearance as the fusion takes
place.
Thanks

Hello All,
First, I want to thank those offered their advice for treating scalp
P. Now I have another issue I'm hoping some of you can help with. I
would like to know if anyone has experienced pain in a shoulder
blade, with it feeling like something is 'out of place'? I have this
frequently in my right shoulder and it starts a vicious cycle of
muscle tension and spasms, leading to a virtual frozen shoulder, and
it always coincides with a PA flare. Pain meds only dull the pain.
I have found the most relief with trips to my Masseur. After he is
able to loosen the tense muscles (usually two visits) he can get to
the deep pain, then as he is pushing and massaging from the back of
my rib cage and shoulder blade moving up, something moves and sort of
clicks back into place...instant reflief but only temporary! I
haven't pursued this with my Rheumy yet. I'm fishing for some
feedback to see if anyone has similar experience, and what kind of
tests were done to determine a diagnosis. I have PA and
Fibromyalgia, and I'm trying to get insurance approval for Remicade.
I know the PA can cause joint and tendon damage and I'm wondering if
that is what is happening with me. I read about people having
shoulder replacements...can anyone comment on what that is all about,
or point to a good reference on the Internet? (Thanks)!
SusanB
[Moderator's note: You might ask you doctor to simply X-ray your shoulder Susan.
If the damage is severe enough, you can actually see the bone spurs caused by
past inflammation on the X-rays. That is the case with my left jawbone for
example. If an X-ray doesn't show anything, you could always try an MRI. It will
reveal any soft tissue inflammation or damage. Ron]

Ali -
I ditto Linda Schroeder's response. Now is the time to get a lawyer. Get
one who does only disability cases. He/she will be good, will know all the
ropes, and SS will usually pay close attention. Age is a big factor, as
Linda says. But a lawyer is worth it - just in saved stress and hassle,
not to mention saved waiting time. And the money is affordable, and not
cash up front. Take it from me, I was one, before disability hit me, and
getting a lawyer was the best thing I ever did.
Best wishes.
Clarke

We adopted Moca (pit bull/boxer mix gee wonder why she is so much stronger than
me) from the SPCA and they require that you have the dog fixed. We thought this
would calm her down but the day after her surgery she was running around,
playing fetch and back to her normal self (wish I could recover that quickly).
She definitely is the dominant one (over me not my husband) and I think that is
attributed also to the fact that she is half my size. Also, when I do
discipline her I don't stay mad long. I can't resist those puppy dog eyes.
That wasn't the first day that she has unintentionally hurt me. She always
drags me around on walks, making my hands/wrists hurt from holding on the leash
too tightly. She will run around the house, or when my husband disciplines her
she will run in between my legs so I can protect her. Several times she has
accidently knocked me over from doing this. Twice she has plummeted into me and
hit me right on my knee joint. I crumble on the floor in tears and she runs up
to me with her tail between her legs and starts to lick my face. She doesn't
mean to hurt me, she is just a big dog and doesn't realize her strength. She is
too full of energy. I would like to be able to walk her without being in pain
or her causing me pain. I have been told that exercise is supposed to be good
for the PA and fibro. and what better way to exercise than walking your dog? I
would also like to have company over without her jumping on them. I know that I
can't control her and it is time to do something about that. Thank you to
everyone for all the wonderful ideas.
hugs,
LEslie

scott,
you may be the only one! back when i first got sick,
and the rheumies here in dayton couldn't help, everytime
i went home daddy would make me go to one of their drs.
he and moma thought that surely in atlanta someone could
cure me, well, no dr had even ever heard of pa!
they thought i was crazy and there was no such thing, hopefully
in the last 6 years that has changed.
my cousin Dr. Edmund Griffin is a dermatologist down by
northside hospital and he saw me once. he suggested i have
my dermie here put me on cyclosporine. that has been a life
saver.
my mom had ra, and osteoporosis for years, but after having
it for all those years a new dr tried to tell her she
didn't have ra, just osteo. he didn't even test her.
next time i am in atlanta, we should talk over the phone.
i was just there briefly in july, spent most of my time
in s ga. at grandmothers. may be coming down soon, 94yr
old granny fell yesterday and broke hip, she is hospital
at albany, doing ok, but you know how it is when the hip
goes.
take care
susan in ohio

Heather,
My stepmother told me that psych. nursing would probably be my best bet (least
physical). I saw a program last night re: the nursing shortage and agencies you
can work for and travel. I thought that would be best so I could take time off
between assignments. I would like to work w/ adolescents or on pediatric units.
My dr. seemed to think that occupational therapy would be a good choice (not as
physically strenuous. As much as I want to do it I have my doubts regarding my
health. But, I can't help but wonder that if I had a job that I liked, that
made me feel good about myself that I might feel better physically. I have to
do something. I can't sit at a desk 8 hours a day. I need to go back to
school. I was a psych major (did 2 years) and then I began my travels, got
married and only in the past 2 years we have settled down. I really miss
traveling though. My stepmom thought this would be perfect for me cause I could
travel again. I know that I could never work in the OR or trauma but there has
to be areas in the medical field that I could perform (physically, mentally I
know I can do anything I put my mind to). My dr. even mentioned that alot of
people w/ disabilities go into the medical field and they have more compassion
for their patients b/c they know what they are going through. How long do you
have to go to school for psych. nursing? I had a real passion for psychology
and only got out of that major cause all the schooling intimidated me (master,
phd - too long). I really regret not finishing school though I wouldn't give my
husband or my travels up for anything in the world. Thanks Heather for sharing
this with me. If you can please email me personally to give more information
regarding the school/clinicals part.
Take care,
Les

I thought I would share my experiences with others on this site.
I am 50 and have suffered from psoriasis since the age of 17.Around
1987 I began to experience aches and pains in my elbows, knees and
toes.This was diagnosed by my GP as ' An early arthropathy', I was
prescribed Voltarol as an anti-inflammatory, which seemed to help.
However, the cold damp British winters were totally unsympathetic to
my plight, and I had more than one or two 'bad days'.I was a foot
patrol Police officer at this time, so having dodgy toes and knees
was no fun!
Around 1990, I transferred to Detective duties, which obviously
involved less physical exercise.At the time I remember taking a long
time to heave myself out of bed and, on a bad day walking downstairs
sideways to ease the pressure on my knees.
The arthritis was not improving nor was my psoriasis; nor my general
physical and mental health.
In 1992, I was retired from the police on ill-health grounds, mostly
due to my problems coping with the above.
After about a year or so later[ my memory gets worse!] , I was
prescribed hydroxyurea once daily.
Whether purely co-incidental or not I noticed a gradual improvement
in my PS and my arthritis.So much so that in mid 1993 I applied to
rejoin the Police.
The inevitable medicals ensued.I was then told that I would have to
re-take the Police 'Fitness Test' before my application could be
considered further.
I made the mistake of not preparing for the Ist test and failed
miserably.I stuck at it, building up my speed strength and stamina,
until I finally passed the test in late 1993.I would add that by this
time my arthritis had disappeared COMPLETELY and my skin was better
than it had been for years.
Shortly afterwards I rejoined the Police where I still am to this day.
My psoriasis waxes and wanes and I now have problems with my neck and
shoulders, which I am told is 'calcification of the neck ligaments'.
However my quality of life is many times better than it was, whether
attributable to drugs, exercise, good luck or co-incidence I don't
know, but I thought I would strike a positive note!
Tip1.. Buy an oatmeal colour lounge carpet if you are psoriatic,
trebles the life expectancy of your vaccuum cleaner!
Tip2.. Several years ago on British TV there was a musical black
comedy called 'THE SINGING DETECTIVE', written by a bloke called
Dennis Potter. Dennis was a very famous playwright who happened to
suffer very badly from Psoriatic Arthritis, he is sadly now dead [
from cancer.] The piece was allegedly semi-auto-biographical and was
very well received.It was funny sad and very thought provoking,
focussing almost entirely on his illness.Check it out if available in
the US.
Love and Peace to all.

is it normal to have a sudden urge to cry for no reason out of the blue on and
off? I don't actually cry but feel like I am going to burst....I can control it
and it used to only happen whenever I was watching something that I really liked
so I thought it was like tears of affection or some sort or of emotion related
to what I was doing or watching but now I feel like this on and off most
days....a sudden surge of emotion and the desire to cry....I think I explained
it well...what do you think? take care.
hugs,
ali
[Meghan's Moderator Note: Ali, this is a classic sign of one of two things- a)
depression or b) hormone-related problems. If it happens all the time, then it's
most likely depression. If it seems to happen at the same times of month every
month, then it would be hormonal. Depression can be treated with medication or
counseling, but it's not something you should try and treat all by yourself.
Depression is a pretty common occurrence with a chronic illness like PA. Hugs!
Best wishes, Meghan]

Hi, just thought I'd check in..... I went to Rhuemmy yesterday and she said
all my xrays were good. I did like her though because she told me she does
believe I'm in pain and it's not all in my head. She thinks I might have
Fibro and possibly PA. Today I went to Dermatolgist, he officially
diagnoised P on my elbows and a copule of fingers, also whereas I thought I
had pits only on one finger he looked through funny glasses and said that all
my nails are pitted. Derm gave me two different ointments for fingers and
elbows and told me to come back in 6 weeks. Meanwhile the Rheummy said that
I should continue to take Darvocet for pain, she didn't want to prescrib any
anti inflammatory yet because of liver, she did have me take xrays of hands
and feet. Rheummy also gave me a referral to a sleep study which she said if
it turns out I have apnea that in turn can cause my body to ache by not
getting enought restful sleep. Last week she sent me to neuroligist to see
why toes ache, if its neuropathy or arthritis. I definitely feel cared fore
LOL.
So meanwhile till my next appt. I guess I'll just cont. taking darvocet every
6 hours as it does seem to help espcially my lower back which is my worst
pain. The rest of my pains come and go, my back seems here to stay.
Peace/Love
Randi

Just a thought on problems with stairs at home. The local 'aids for the
disabled' companies advertise stair chair lifts. From photographs it seems to
be an electrical driven device with the chair being raised up and down the
stairs on a rail by the wall and so for others the stairs can be used normally.
I guess it might be expensive, but I figure it would be cheaper than moving
house.
Regards, Gordon

NEWJERSEY23 ASKS IF I KNOW WHAT MADE ME BETTER. MAYBE THE
HYDROXYUREA, MAYBE LESS STRESS, MAYBE JUST LUCK, WHATEVER THE REASON
I THOUGHT IT WAS WORTH SHARING MY STORY.I WAS TOLD THAT PA CAN GO
INTO REMISSION, PERHAPS THAT IT IS THE EXPLANATION.WISH I KNEW, BUT
I KNOW ONE THING I THANK GOD IT HAPPENED!
REGARDS.

One more question:
Also -
Nobody really spoke up about the homeopathic medicine thing.
It seems that if some 30c rhuta graveolens can supress the
inflamation and pain in my feet- do I neet something stronger or
should that be enough?
Sincerely,
Mendel

OK- I don't think I was clear when I asked the question the first
time:
Is it an accurate diagnosis of PA to say that in combination with a
family history and my own skin lesions, I had an x-ray taken of my
feet by an orthopedic surgeon and he said the nicks in my foot bones
are arthritis?
I went to see the Rhumatologist today but was turned away without
insurance- told to wait until I get my medicaid in line. $250 for the
visit plus tests - but not so long ago, another doctor wanted $10,000
in tests, so maybe this isn't so bad?
The woman at the public health keeps telling me to wait for her to
call me - perhaps I should just go ahead and find a lawyer. Anyone
know an SSDI Attorney in Rockland County, New York?
Sincerely,
Mendel

Anybody else have this problem with the circulatory
system?
And does anyone know a good rheumy around Bangor,
Maine?
Thanks.
Dianne in Boston
=====

It is great to have a rheumatologist who consults, discusses and includes you in
the decision making process. I had a long consultation and discussion with my
rheumy today regarding the liver problem. The conclusion reached was that as
everything is so stable at present on mtx, prednisone and celebrex, no change
will be made to the medications and the liver biopsy will be repeated in twelve
months time. The stablitity outweighs any risk, which would in any case be
small, and in the ensuring period things may change regarding medications,
hopefully with the biologics finally subsidized. Also, with the slow
progression of the liver problem and given the size of this organ, another
question is would it actually cause a major problem within my life expectancy (I
am now 63).
Alternatives to mtx were discussed and discounted. We had many years ago tried
plaquenil and sulphasalazine but these did not prove effective. My rheumy said
Imuran, as suggested by the gastroenterologist, would be less effective. Arava
was the next discussed, but he said it may also not be so effective, and carries
a greater risk of liver problems. Finally, it was the question of antibiotic
treatment, but he said this would not be suitable in my case.
Because of its effectiveness, the prednisone is also to continue, as with the
maximum daily dosage of celebrex. He also said that with prednisone making such
a difference, it proves that the inflammatory process must be the major problem
rather than the mechanical degeneration of the joints and it has settled the
costochondritis. Prednisone apparently is not effective if the mechanical
process is the major problem.
My rheumatologist is aware that I am very well informed through the internet and
is pleased that there is this support group to discuss things with. He said it
is a good thing to have such support. Thanks to Michelle and all the others and
I hope you take satisfaction from what my rheumatologist said.
How complicated this disease of ours can be. Especially in finding the most
effective treatments.
Regards, Gordon

Has anyone been to OT for their PA? I was given a slip by my rheumy
for 4 weeks of OT 2-3 times per week. On my first visit they said I
would only need to attend two more times, once per week for the next
two. On my second visit nothing was done, their fault, they were not
prepared at all. After the first visit night splints were supposed to
be ordered. Of course after the second visit someone dropped the ball
and didn't put in the order.
Anyway, has anyone attended therapy and been happy with it? My best
therapy so far has been swimming, on my own, at the "Y".
Unfortunately i