For those who have Psoriatic Arthritis

Hi Everyone, I am having a big panic attack and need
your help. As I have mentioned before I have bad hip
pain that seems to radiate to my groin and go all the
way down my inner thigh to my bad toe it seems
forever. I am not sure if I read this somewhere, If I
am letting my imagination go wild or plain ignorant
about the subject but I am horrible panicking that
this pain could be a blood clot. I dont know anything
about this subect but I am totally freaking out.My leg
doesnt seem to be swollen, my A toes is though. Can
anyone help???????????
So glad you are all here.
Judy

In a message dated 9/5/00 2:17:21 AM Pacific Daylight Time,
PsoriaticArthritis@egroups.com writes:
Hi all,
The folic acid is a methotrexate antidote so to speak. When you take it , it
stops the action of the methotrexate. That is why the doc usually says NOT to
take it on the day you take your Metho shot or pills. The Metho can help
tremendously with the mouth sores, fatigue, anemia and is well worth taking.
I have heard reported doses of anywhere from 1-5 mg per day for six days a
week from friends on the list over the years. It is pretty cheap, but somehow
you need a prescription anyway to get the 1 mg pills-the healthfood stores
have it around here-but in much smaller doses-so you would be taking three
pills to make up for 1 mg-pretty bad if you already take a few dozen pills a
day to deal with, so I asked for the prescription. It was and is not
reimbursable, but at least it is in the higher dose and is a teeny pill too.
I personally endorse taking it -- at least 1 mg six days a week for everyone
taking methotrexate right away! It can only help, and I am unaware of any
side effects from that small a dose, just good effects!
Michelle
Join the Mailing List website for Psoriatic Arthritis by going to
http://www.egroups.com/
and sign up expertly for PsoriaticArthritis. We now have over 350 members
globally!

Hello everyone,
This topic comes up every six months or so, and unfortunately, each time
several people get hurt and very upset by the unfortunate tone of some of the
exchanges about this topic. I must ask the discussion on this topic to cease
now. I am also asking all moderators to delete any messages to the list on
this topic and forward them to me personally and I will handle them.
The policy has always been the following and it will remain so:
Off topic listings to the list are allowed under the following circumstances:
The "OT" label must appear in the subject line of the posting.
There should be no more than three such postings from each member per day.
OT listings are very helpful to some for their spiritual and emotional well
being dealing with PA, and that is why I will continue to support this
policy. I do recommend that those who do not want to take the time to read
OT e mails get the digest format of the list. Then it is just a matter of
whizzing right by the e mails that you do not want to read once you see the
subject line is "OT". If you need help changing your status to digest format
rather than the message by message format you now receive just go to the
page: http://www.egroups.com/ and sign yourself in. Then change over to
digest only version. You will receive one e mail for each days postings and
at the beginning of the e mail is the summary of all the subject lines of
each posting. It is really simple. Please let us stop the bickering and
nasty tone over this issue,
Thank you in advance,
Michelle
Your humble founder

OK all, I think some people are being a bit hard on
Roy and company. I get email all the time from people
who are dissatisfied with the turn this list has
taken.
Roy and Dale are members in good standing of this list
and I think it is terrible that people are telling
them to go away and find another list.
I have been managing lists professionally for over a
decade and have seen lists change over time, but none
as quickly and completely as has happened with this
list. Our membership growth used to be steady, but has
declined in recent months as new members join, find
the conversation only tangentially related to
psoriatic arthritis, and leave. The list conversation
has been dominated by a relatively small group of
people, and I find that a shame.
I look forward to the list going back to being open,
understanding, and dedicated to psoriatic arthritis.
Robert Harris, North Jersey Highlands

EVERY TIME someone has brought this problem up, they've been slammed by
some of the more vocal members. I think Roy and Melanie speak for a LOT of
people on this list who do get a little tired of LOADS of email about
off-topic issues - it's not just about one or two emails every so often,
which is of course no big deal. Yes, there is a delete button, but going
through a lot of off-topic emails takes extra time and energy, and simply
adds to lifes little annoyances - which I'm sure we'd all like to cut down
on.
I value this list very much, and look forward to the digest daily. I don't
think it's unreasonable to request that we try and keep our posts on-topic.
Just my humble opinion.
Kristin Boice

I am not the most active "poster" but I credit this list with
allowing me to be able to work with and understand this disease
enough to be able to CHOOSE not to medicate and attempt to start my
family. I could never have done that without the support of a large
resource of people who have experience with the disease, the
medications and the side effects.
I have not met a doctor yet with much experience with PA so I was
able to turn vague replies from her into actual information from all
of you. Is this a list for people with PA? You bet. It would help
certain people to remember that this disease affects much more than
our physical health. You all have brought me out of depression the
likes of I had not known. Medical advice is available anywhere but a
large group who knows firsthand about the effects of PA in our lives
is a blessing we are lucky to have. Of course I want to know about
your doctor trips, field trips, kids report cards, dog bites, your
thumb that hurts, your bad day, your good day......
I don't think I need to go on!!
If you want only medical advice, go somewhere else. This family of
PAers has life experiences to share.
Gillian-don't go, we really NEED/LOVE you! You make us laugh out
loud while sitting alone and thats the most potent medicine of all!!!!
Sarendra

HI GANG..HADNT BEEN POSTING CUZ OF ALL THE ERUPTION SINCE ROY AND MELANIE
MADE THEIR "COMMENTS" ABOUT THE LIST. I, FOR ONE, AM UNHAPPY ABOUT THIS.
TO ME THE LIST WAS JUST FINNEEEEEEEEEEEE UNTIL ALL THIS STARTED. GILLIAN,
PLEASE DONT LEAVE. YOUR POSTS ALWAYS MAKE ME LAUGH.
OK WENT TO GP DOC TODAY...HE WANTS TO RUN TESTS FOR ARTHRITIS...(WHY IS
BEYOND ME WHEN ITS OBVIOUS I HAVE PA!!!!!!) AND HAS GIVEN ME AN RX FOR
DICLOFENAC. HAS ANYONE EVER TRIED OR HAD ANY SUCCESS WITH THIS
MEDICATION??????? I DID COMMENT ON VIOXX, AS THATS WHAT I WANTED AS EASY ON
THE STOMACH, AND HE DIDNT EITHER SEEM TO HEAR ME OR CARE, OR MAYBE HONESTLY
JUST DIDNT HEAR ME. IF THIS MEDICATION DOES NOT WORK, I WILL ASK TO TRY
VIOXX THE NEXT TIME I GO. HE WANTS ME BACK TO SEE HIM IN A MONTH.
UP UNTIL NOW, ALEVE HELPS ME SOMMMEETIMES BUT MMOST OF THE TIME IT DOESNT.
THE PA IS MAINLY IN MY RIGHT HAND AND WRIST NOW. YES IT STILL MOVES AROUND,
AND HAS SEEMED TO SETTLE IN THE HAND/WRIST FOR NOW.
WOULD GREATLY APPRECIATE ANY FEEDBACK ON THIS.....
LeAnn & Blossom
Heart Bandits American Eskimo Dog Rescue
Railroad Coordinator
www.heartbandits.com
moderator 2 cents: LeAnn the Diclofenac is the generic of Voltaren. Cheaper. I'm
currently taking 75mg twice a day. Historically Voltaren is harder on the
stomach than Celebrex or Vioxx but if it works for now it saves you a lot of
money. I've tried both Celebrex and Vioxx and had to stop both of them. Pat B

I do not post often, but I read all of the postings every day. I find that sooner or later whatever is discussed applies to me also. As for sticking only to PA in our posts, I thoroughly disagree. I feel that this e-group is like an extended family. We are all so much more than our shared condition. If that is all that we dwell on, (pain, depression, disability), then we are all diminished. Some days I can't be analytical about PA. I need the humor, sharing of feelings and family, all of the things that make us all unique, not just a disease. Gillian, I hope you reconsider unsubscribing. I enjoy your chats about family and your ever-present humor. Often, laughter is the best medicine, especially when conventional medicine isn't working. This is supposed to be a support group. Let's hear a little support, folks.

Allayne

Patricia, pink eye or conjuntivitis can be caused by psoriasis. I have had several infections in the past 10 years. Also, most of the time the inner part of the upper eyelid feels like sandpaper. I use eye drops everyday.

Hi All, I was under the impression that this is a support group not a BASHING group. In my experience, you have to deal with the body as a whole, not just parts of it. If you have PA or any chronic condition it also affects you in ways other than just physical. Your mental picture of things related to life in general is also affected. I believe it doesn't matter who you are, that if you joined this group it was to gain knowledge about the disease process of PA and to have someone to talk to that understands your problem. Most of us know how difficult it is to explain what PA is to others who aren't affected by it. All of us are still learning and trying to have a life that is somewhat normal and deal with PA and P at the same time. I try real hard not to let this get the best of me as I'm sure most of you are doing the same. Some of us need to step back and think before we speak to prevent hurting others feelings and aleinating them and what they deal with on a
daily basis. In other words adjust your bad attitude and carry on with life, don't criticise others in the group for using the group as a sounding board. That is what we are here for, to share our knowledge and give support to those in need, even if it is to vent frustrations regarding personal issues other than PA, because PA is not all there is to life. It just takes us on different paths than where we started or thought we were going to go. For some of us, dealing with other issues is an escape from the pain. So please don't put you foot in your mouth while trying to talk!! It's bad manners to talk with your mouth full. Have you ever heard the saying " When I woke up this morning, I had one nerve left and damned if you ain't got on it! " Well, I've got to go now. I do have to work for a living and deal with someone else who doesn't understand about how I feel and really doesn't give a s**t. They are called co-workers. Cassie

Hello Diane,
My cousin (59 yrs) had polio as a child . Her left arm
is 30 % impaired as well as her left foot. Some years
ago they discovered she suffered from this post polio
syndrom.
Apart from that she has PA and fibromyalgia since more
than fifteen years. But she also has an indestructable
sense of humour and, needless to say, is my favourite
cousin.
I just spoke with her on the phone (she lives about
3000 miles away) and I told her about your question
because I know she also frequently stumbles and is
soon tired. Her reply: "If you have been run over by a
car do you ask whether it was a Mercedes or a Toyota?".
Greetings.
Margaretha.
Diane Kamperman wrote
Tu correo gratis en MixMail http://www.mixmail.com
Inicia tu navegacion en http://www.ya.com

Hello all!
I wanted to get my 2 cents in on this mouse thing.
I have severe pain in my right wrist and occasionally swelling in the
knuckles. Imagine my dismay when my husband went out and purchased a
new mouse for home(very different from the one at work!). I hated it!
********fast forward 2 weeks***********
Its made by Logitech and its the best thing thats happened to my
computing life!!!
Its a stationary mouse with the roller ball on the left, operated
with the thumb and a roller between the 2 mouse buttons. I use a
mouse wristrest occationally but most often its just sits on the desk.
I am getting one for work!
Smiles
Sarendra

Hi Roy and Melanie
To my knowledge it still is and a very interesting and supportive list.
From your previous e-mails, 29th May, 5th June, 3rd September and 5th
September, I can see you have been one of the 'very active' and 'very
supportive' members. The initial two e-mails were in response to my Evening
Primrose Oil and Cholesterol messages. I for one posted a question to you,
which has not as yet been answered, so perhaps you can take time out from
your "Criticism" and replied to it. Here is the copy:
Can you please inform us about your treatment with CD11a. For example was it
an injection, IV or pill? Did you have any side effects? When you say good
results, has it assisted your arthritis?
Love and God Bless
Gillian
Posted 3rd of September, perhaps you missed it or just chose to use the
delete key???
nonrelated problems and or experiences<
Can you please explain what you consider to be "NONRELATED?" Unfortunately I
cannot unzip this condition and leave it behind me when I wish. It tends to
follow me around and generally makes my life Hades, even when walking my
DOG! I reside with my Mom, who I love, but she is knocking on in Years. I
know others members also reside with there Moms. If my Mom has a problem,
that I cannot figure out, are you suggesting this has nothing to do with ME,
let alone PA? We know STRESS plays a BIG ROLE in PA. Waiting for Mom to come
crashing down the stairs, you do not think is STRESSFUL?
How many members did we have and how many members do we now have? I am sure
that if everyone wanted just a PURE medical low down on treatments, drugs,
side affects, symptoms, Rheumatologist, Nurses, Dieticians, they could
easily locate all this on the numerous Medical Sites. However if people want
to know they are not alone, social outcasts, that at the end of this
keyboard is another person who suffers, has a insight on this condition,
then they locate a "E-Group".
Coping with PA is not JUST about popping Drugs. If anyone is on a 'down
cycle', no matter how many drugs they pop, sometimes they cannot get out of
that cycle. Then out of the blue, a silly, stupid e-mail arrives from
another member and that person suddenly starts to smile.
away from
the computer<
Just for you I will UNSUBSCRIBE and I hope YOUR DEMAND for this list to
return to, "as YOU like it", will transpire!
Gillian
Goodbye and God Bless
[As for the Poll I will close it tonight, do the Summary of findings and
e-mail it to another member for posting]

Hi,
Went to the Rheumy today. Got a shot in the Bursa part of the left
hip and he said if that didn't help the hip I would need to get a
radiology appt to have a shot in the hip joint. Yuck!
I have had swollen glands and jaw problems and he said to get a chest
x-ray to see if the glands were sacroid? swollen glands in the chest
maybe. If the jaw keeps giving me problems and the glands stay
swollen and the x-ray comes back negative then he suggested a lip
biopsy. The biopsy would detect Sjogren's Syndrome as well as sacroid
problem. The SS blood test came back negative (done in May).
Pat B

Good Afternoon all,
Well I took your advise and located a new Rhuemy. I spoke with him for about
1/2 hour. He was patient, answered all of my questions and explained
everything he will be doing on our first visit, which will be on Monday. I
was so embarrassed because I cried. I think more out of frustration than
anything else. He was so great about it. He really seems to understand. He
also asked that I be patient if I have to wait when I come in for my appt
because although he tries to stay on schedule he does spend as much time as
needed with his patients.
What finally pushed me to call was I woke up and was in more pain today than
I have been in a long time. I almost fell on my face when I put pressure on
my left foot, and the thought of going back to my Rheumy and getting the
brush off again did not exactly thrill me.
I'll let you all know how it goes
Jill

Hello everyone,
I have been a member on this list for over a year. It used to be a list
about psoriatic arthritis. Lately the list seems to be used as a sounding
board for certain peoples nonrelated problems and or experiences. Get a
life,make new friends,start a hobby,do anything that will keep you away from
the computer. Let the list get back to the way it used too be instead of
telling us how many times you walked the dog.
Roy, Melanie
Robbie, Andrew
and Shannon :) :) :) :) :)

Hi Helen,

I think the test you are referring to is an EMG. I had one done about 2 weeks ago and it was not as bad as I had anticipated. My doctor gave me some pills to relax me and I had to have someone with me to drive me home. I have carpal tunnel syndrome in both wrists. It is worse in my right wrist. The nurse administered electrical shocks to different nerves in my wrist, hands, legs, back, ankles, and feet. I had sensors placed at different places to register how much of the impulse traveled down the nerve. She had to keep increasing the voltage on my right hand and apologized for the pain. I didn't feel that much. However, that is not a good thing. I have severe damage to the nerves in my right hand. I also have a very high pain tolerance. I suspect that all of us with PA do, or we wouldn't be able to function at all.

The doctor then came in and inserted needles in the nerves to test them. This was slightly uncomfortable, but the pain only lasts for a short time. It really gives the doctor a better idea of any nerve damage that may have occurred.

After I got home from the test, I slept most of the afternoon. The next day I felt like I had been hit by a truck, but after that, I was the same as before. If your doctor thinks it is necessary, don't be afraid of it. It certainly isn't as bad as a major flare.

Allayne

Hi Jill & Tracy
While Mom was sleepwalking, I was reminiscing.
I once worked for a Major Car Dealership in England. Yes NEW Cars and Second
Hand Cars!
Anyway I had not been there long, when I had to see the Used Car Sales
Manager about a few Invoices. The Used lot had what I would call a Cabin for
an office. Wednesday afternoon having put this trek off, I decided I would
go. Walked through the showroom, across the Used lot arrive at this Cabin
come "Sales Office" and walked in!
I hear you say, so what was wrong with that?
I walked in on yer man and a Customer, enjoying each others company, half
naked, sprawled over said Sales Desk! Yes SHOCK HORROR!
I cleared my throat and said, "Sorry I will call back at a more convenient
time!" Turned around and walked out.
It was only while I was stood outside did the 'reality dawn!' This was not a
movie set, I was not watching a film, or television program, this was
'real'. I then started to panic over what I had said and my reaction! Was I
politically correct? Suffice to say, did it matter!
Yes I reported the incident, not that I was 'believed'. They wanted a full
account of what I witnessed but I refused to be that explicit! Could you be
THAT explicit? As I said, "The problem was not what I had witnessed as I was
an employee. However if I had been a member of the Public, who wanted to
purchase a Car, what kind of an impression would that incident leave?"
Up to that point I thought I had experienced just about all kind of
workplace incidents. But that really did take the biscuit!
AND no I did not ask if it was SAFE!
However the Sales Manager was married with four children, but this Sales
technique was certainly not Company Policy!
Love and God Bless
Gillian
Anyone who takes himself too seriously always runs the risk of looking
ridiculous;
anyone who can consistently laugh at himself does not.

Jill,
The same way PA causes inflamation in the joints, it can also cause
inflamation of the tendons at the point where they insert into bone. Same
process. A lot of the time is is just really painful, but does not cause
destruction, however, just like with joints, it can in some cases. / Nancy
in Wisconsin

To those of you who are just trying MTX, I've had very good results with it
and not really much in the way of discomfort. I do have the occasional few
days of "irritable bowel syndrome" and I also take Folic acid every day
because I did start out having mouth sores. I'm up to 6 pills every
Saturday and so far so good. My P is almost completely gone and my joints
seem to be quieting down a good bit. I went to the Rheumy today and she is
quite happy with my progress.
I have two other problems at the moment. My thumbs and index fingers on
both hands are numb and I am having a lot of problems at work because of it.
I am the Lead Book Keeper at a large chain grocery store because I need the
insurance and counting money that I can't "FEEL" is quite a challenge. So
the Rheumy wants me to get a Neurologist to give me some kind of tests for
the nerves in my hands and neck. I have fused discs in my neck, midback and
sacrum area from the PA. I also currently am attacking inflamed ligaments
and tendons in my feet and destructive joint disease at the arch level on
both feet. One toe on my right foot is completely numb as well and the
Podiatrist that I just found last week and is absolutely WONDERFUL has
already given me cortisone injections in that foot to try to temper the
inflammation. He's also sending me to the brace shop at Roosevelt Institute
for Rehabilitative Medicine for arch supports specially made. He hopes that
this will keep me out of braces for a few more months or years.
So anybody had these "nerve" tests? Podiatrist suggested it but said it was
extremely painful and he would wait and see if his current course of
treatment would solve the problem. We all know that with PA you are
constantly putting out fires - never conquering the disease itself. So it's
onward and upward to another fire.
I would appreciate some input if any of you have anything on this nerve
thing. Rheumy said I probably have carpal tunnel and that wouldn't surprise
me at all. I don't have any pain in my wrists - the thumbs and index
fingers are just numb. There was a time when I did have pain and she put me
in splints for that. Then that went away and now I am left with the other.
Interesting, very interesting.
Well, off to bed with me. I drive three hours round trip to go to the
doctor and have just found the Podiatrist within 8 miles of home. Wonerful,
a wonerful in the words of the late, great bandleader who shall remain
nameless because my meds have kicked in. Now if I could just find another
good Rheumy down here and a Neurologist I would have it made in the shade.
Oh yeah - Lawrence Welk - see I'm not totally brain dead. Darvocet only
kicks in once in a while.
Peace and tranquility to one and all.
Helen in rainy south Georgia where it's really nice and cool for a change

Hi All
I think I might have a real serious problem here.
I caught Mom 'sleep waking' last night! She was close to sleep walking down
the stairs and of course I am worried in case she falls down the stairs.
The night before she was dreaming and calling me. Of course I eventually
went up to see her, asked her if she was awake and she said she was, but she
was NOT!
I eventually woke her up! I do not mind that, but sleep walking is a new
symptom and of course I am worried. I thought only children sleep walked?
Suffice to say Hermes is unnerved by all these nocturnal happenings. She
refused to go anywhere near Mom this morning!
Anyone out there know what I can do? I am out of my depth here on this one!
Love and God Bless
Gillian
Anyone who takes himself too seriously always runs the risk of looking
ridiculous;
anyone who can consistently laugh at himself does not.

Hi All
I woke this morning to notice a severe red/brown rash on the nail of my
index finger?
It only took me one hour to figure this one out!
The stain I was using to paint the windows, well obviously I got it on my
hands. I washed the hands, but where the pitting is on my nails, the stain
remains!
According to the instructions, this stain, 'Preserves and Beautifies Wood!'
Wonder what it does to nails?
Love and God Bless
Gillian
Anyone who takes himself too seriously always runs the risk of looking
ridiculous;
anyone who can consistently laugh at himself does not.

Hi All
I will be closing the POLL soon. Therefore any of you who wish to be
counted, vote now!
Love and God Bless
Gillian
Anyone who takes himself too seriously always runs the risk of looking
ridiculous;
anyone who can consistently laugh at himself does not.

Hi Diane, We have been hot, humid, now we have a cool front coming through and it has rained and had thunderstorms for the past 5 days straight. How much rain do you want? No shortage of it in eastern NC. I'm ready for some sunshine. I think it's supposed to rain for another day or two here. Our temps have been in the high 90's and not much breeze now it's a very soggy 67 today. Cassie

Patty,
It's going to be another scorcher today (107F/41.67C) in Houston -
less than your 112F/44.4C - but there is hope in sight! Tomorrow it
is going down to ONLY 100F/37.78C and Thursday and Friday it is down
to a chilly 93F/33.89C! Hooray. Fires are popping up all over down
here too.
I like it warm but this is ridiculous.
Diane
Toasty (Roasted) in Texas
Say, I've heard that back up in the Northeast you have had much
summer. Can you send us some rain in exchange for a little heat???

Gill, we have already determined that you are not Normal. ;o)

Hi All
Today while in Town, I noticed a machine in the local Pharmacy. Anyway being
bored waiting for Mom, I decided I would have this health check for one
pound in money!
So I duly did what it told me and here are the results.
Height 164cm or 5 foot 4 inches.
Weight 66.9 kg or 10stone 7lbs. [147lbs]
Body Mass Index 24.8 kg/m2
According to the index my Body Mass should be between 20 and 25, therefore I
am fine.
My ideal weight should be between 8 stone 6 pounds and 10 stone 7 pounds, I
am just in it. Yet I thought I was overweight????
Then we come to the real interesting one, my Blood Pressure. Wait for it!
Maxium Systolic 129
Minimum Diastolic 77
Further down the results it says:
Normal* up to Maxium Systolic 140 and Minimum 90
Borderline 141-159 & 91-94
Hypertension 160....... & 95.......
This goes to prove I am NOT normal 129/77 because I missed normal* 140/90!
Love and God Bless
Gillian
Anyone who takes himself too seriously always runs the risk of looking
ridiculous;
anyone who can consistently laugh at himself does not.

Hi Jayne
And I just tidied my bedroom yesterday, now all the book are out again.
Initially can I STATE testing positive to the HLA-B27 translates to ZERO!
Let me see if I can come up with a real simple explanation. For the purpose
of this exercise, HLA-B27 is a white dog! So white dog falls in love with
black dog and they have four pups. One pup will be pure white, one pup will
be pure black. One will be predominately white with black spots and the runt
is black with white stripes! So of the four pups who has the HLA-B27?
It could be none, or all four! So of the 'four' pups with HLA-B27, how many
will succumb to Ankylosing Spondylitis? Answer; none or all four!
And that is why HLA-B27 means nothing!
Recent research indicates a 90% or more relationship of AS with certain
blood groups. In this case, it is not one of the familiar A, B, or O, as in
red blood cells, which are important for blood transfusions, but one of the
lesser known groups associated with matching organs for transplant. The
white blood cell group involved in AS is known as HLA-B27 and is INHERITED,
so people BORN with this group have a 'much greater chance' of developing
this condition, 600 times greater! However, at least four out of every FIVE
with HLA-B27 NEVER get AS! One out of five will get some FORM of it and of
THOSE most will be only mildly affected and perhaps never go to the Doctor!
Some Physician believe an infection in the pelvis is the final trigger in a
person who has inherited this susceptibility.
HLA-B8 is associated with Lupus.
HLA-DR4 is associated with RA
HLA-DR3 is associated with Psoriasis.
However! Not all people with Psoriasis go ON to develop Psoriatic Arthritis!
So even if they have HLA-DR3, they may never erupt in Psoriasis. Even if
they do, they might never have the arthritis.
Look at it this way. I could have inherited faulty genetic information. The
medics do a genetic screen and inform me that "I" carry the marker for three
heads, four legs and one arm! My partner carries the genes for one head, two
arms and two legs. However I am pregnant and child is born NORMAL! That is
NOT to say that on a second attempt another child will be normal, or in fact
abnormal. Sure they can give you the RISK, 75%, 90%, but the bottom line,
they do not know.
I have a friend who has two children, both boys, with a serious inherited
conditions. Imagine my shock when he told me the wife was expecting again.
His eldest son is now blind, his second son has extra digits and verbal
communication is none. He is also loosing his eyesight. The last born is
fit, healthy, a dote, blonde hair blue eyes and butter melts in his mouth!
YET they were told, third child the RISK increases to 99.99% Yet he is
extremely healthy and now bullies his brothers! Here abortion is not an
option, it is illegal, just as well!
Last week we had a Twin, who has PA, yet his brother is healthy.
Ultimately with the HLA system, there are too many anomalies to draw any
concrete evidence.
However if you needed an Organ transplant, this system comes into being and
is very important.
Love and God Bless
Gillian
Anyone who takes himself too seriously always runs the risk of looking
ridiculous;
anyone who can consistently laugh at himself does not.

Hi there,
I don't know if this will be helpful to you or not.
I do know some pople on Remicade.(monoclonal antibody)a tumor necrosis
factor(TNF) blocking
agent... for some it is a miracle ...BUT the persons I know using Remicade have
RA not PA
..TNF causes the inflamation in the body.
Most common side effects= upper resp tract infections,
headache,nausea,sinuitis,rash and
cough...this med is given by infusion..
I have been researching this med........it (at present) is not available here
in Canada ..it
is a pretty new drug..long term side effects are unkown.
People with RA are using Remicade in conjunction with MTX..
Take care now
Debi, in Canada
Mom to Alicia (PA)

Does anyone out there know what the chances are for our children to
inherit this? Are their chances higher when one parent is hlab27
positive. I have just discovered psoriasis on my childs elbows so
needless to say - I am quite nervous. I am also wondering if I should
call the pediatrician or just wait and see. My p started at 15 and my
arthritis started at 31. Jayne

Hi Jill tis Gillian.
Thankfully you are spelt with a J otherwise I would think I was e-mailing
myself.
YES I have located another Gillian Rowe on the Internet, Hotmail address. We
tried to e-mail but gave up, because both belong to e-groups and we thought
when the message FROM read Gillian Rowe, it was one we had sent to the
e-groups. Confused, we were!
Yes why not Interview the Doctor! On arrival here the only thing I knew, I
had arthritis and needed a Doctor who gave injections. I had one injection
in England. Therefore I spent all day in Town, waiting for people with RA to
pass. I then asked them who there Doctor was and they told me. I then asked
if he gave them injections, or did they have to go to Hospital. I then drew
up a short list. I then asked my extended family members, who there doctors
were. I was then left with ONE name, so off I jolly well went. I signed up
with him and that was that, or so I thought. Two weeks later Pidgie asked me
if I had located a Doctor, so I told her what his name was. Poor Aunt almost
had a fit, "Thomas is your Cousin, do you not remember him?" No his face did
not seem familiar! My Grandmother sister, Great Aunt Margaret, was in
hospital for many years after falling a breaking her hip. On holiday first
stop was at the Hospital to see her and hand over the Duty Free bottle of
Brandy. Once she had seen me she knew that Tom would be down the following
week, her Grandson. Sure I knew he was in England, studying to be a Doctor,
but had never met him.
Ten years after she died, I walk in to this Doctor, not knowing it was HIM!
Odd how lives paths cross!
So yes, do Interview them, or at least ask around. I noticed on my visit to
America, many people were wearing splints? Personally I would have asked
them!
Love and God Bless
Gillian
Anyone who takes himself too seriously always runs the risk of looking
ridiculous;
anyone who can consistently laugh at himself does not.

My physician at Columbia Presbyterian in NYC had me on 50 mg of Methotrexate
once weekly by self-injection. I also had to take leukovorin rescue at a
certain number of hours after the shot for three dosing. I also had to take
between 1 and 5 mg of Folic Acid for mouth sores and to help with anemia on
the six days I was not taking the shot of Methotrexate.
My doctor has tried some people with dose over 50 mg-say 60 mg= but there was
no clinical difference in the response any higher than 50 mg -- so 50 mg is
the ceiling he uses.
We also discussed liver biopsies, and he still feels that unless I developed
trouble with my laboratory results or had symptoms indicating that there was
something amiss, I will not have to go through one. He said that they used
to have to do them all the time, but have now found that the lab results are
very well correlated as a predictor of liver damage,
Michelle

Hi Tracy
When it comes to Politics I have a hard fastened rule, vote for the one who
has sex appeal!
Well who ever the next President will be, you are going to see his face
plastered all over the News for the next few years! At least if he looks
NICE, you do not mind. We had Mrs Thatcher in England, and boy I broke the
television with the remote control going on standby.
If they are pleasant to look at, well at least you can look at them. If they
are unpleasant, in my experience they could be giving you a Tax Break of
three million dollars and you never know because your attention has wondered
elsewhere!
As for Dermatologists?
I am always stunned at how different 'Ologists' view conditions outside of
there remit!
According to my Rheumatologist here, my Psoriasis is quote SEVERE, while the
Arthritis is mild!
He then sent me to the Dermatologist who reversed it, "Your Psoriasis is
mild, but your Arthritis is severe!"
Likewise according to my Rheumatologist my Blood problem is severe, yet
according to the Haematologist I have no blood problem!
I now believe this is a 'get out clause'. The Dermatologist, who cannot cure
P, places the disease emphasis on the arthritis. Pass the parcel! Likewise
the Rheumatologist who cannot cure the A, places the emphasis on the P, pass
the parcel. Both systems work well, because the Patient, ME, feel 100%
better. I have P but it is not a problem because the A is more serious. OR I
have A but that is not the problem because the P is severe!
Nothing like confusing the patient! After a while you will begin to see the
light. Ultimately neither Dermatologist or Rheumatologist know, but they get
the PROBLEM, us the patient, out of the office ASAP!
Over the past several years I have noticed that I am a problem and a
conflict! This was proved when I ended up with my Rheumatologist and
Haematologist 'arguing' at the bottom of my hospital bed, over WHOSE Patient
I was! If there is any need for cloning, that was IT! That way I could have
three of me and they could have the same condition in each department to
concentrate on!
Love and God Bless
Gillian
Anyone who takes himself too seriously always runs the risk of looking
ridiculous;
anyone who can consistently laugh at himself does not.

One more thing!
If you don't have a computer store near you, there are many catalogs
and websites that show the stuff. Unfortunately you can't try them
out for fit but you can at least see the stuff.
Diane
Very Toasty in Texas

I've seen the touch pads but not worked with them. It is a flat
surface either next to your computer (instead of the mouse) or built
into the keypad (usually smaller touch pad). You can use a stylus or
your finger to move things around.
Have you checked out the different mouses/mice? Besides the standard
mouse, they have track balls. Some of the track balls are set up so
your hand rests on the thingy and your thumb operates the track ball
and your fingers operate the clickers. Others have the track ball in
the middle so your palm rests on it and your fingers operate the
clickers. My husband likes the big track ball in the middle - his
hand is quite large and it is more comfortable for him. He also has
carpal tunnel problems. I prefer the smaller thingy with the track
ball on the side under the thumb. They make right and left handed
models of the thumb ball style - but you will probably have to
special order the left hand one. Most large computer stores will
have a display of a dozen or more mice for you to try.
I have seen several styles of support pads/wrist rests. I personally
find most of the wrist rests difficult to work with. There was one
that had a regular mouse pad with a gel type blob on the one end to
support your wrist.
If you have a computer store reasonably near you, go and check them
all out. The wrist rests may be in a different section than
the "mice" and the touch pads are probably with the keyboards.
One important thing - make sure your mouse/track ball are at the
correct height. If it is too low, you tend to bend your wrist at an
uncomfortable angle. If necessary put some files (you can tell I
work for lawyers) or books under the mouse pad to bring it up to a
comfortable level. The same goes for your keyboards. Ergonomically
your keyboard should be level with your hands when your elbows make a
right angle (or little lower). This puts much less stress on your
arms, shoulders, wrists. And don't forget to make sure your
monitor/screen is at a comfortable level. Look straight ahead and
down a little bit - that is most comfortable for most people.
Sorry to have gotten so lengthy.
Diane
Very Toasty in Texas

Hi All
For those of you with hand problems, here is a real easy exercise.
Place both hands flat on a hard surface, in a resting position. Slowly move
your index finger off the surface and place it back down, either to the
right or left, depending on how comfortable it is. Then repeat with the
second finger and so on. Once you have completed that task once, go back
through starting with your small finger, to your index finger.
I observed a Physiotherapist instructing a RA patient on this technique
while in hospital and became addicted to this exercise. With practise I can
now move each individual finger two inches to right of left of the
neighbouring finger.
The other exercise comes from Star Trek, the Vulcan Greeting. Index and next
finger together, leaving third finger and small finger together. It is also
important to exercise your grip, which you can do with 'Play Putty' or a
small Squash Ball. Just take time out to exercise the fingers and grip and
in the long run the destruction will be minimal.
When people mention exercise we tend to think of running, walking, swimming
or aerobics. However with PA it is important to exercise the 'small joints'
and we tend to forget about these.
Love and God Bless
Gillian
Anyone who takes himself too seriously always runs the risk of looking
ridiculous;
anyone who can consistently laugh at himself does not.

I have a question ... I know several people out there with PA have
involvement in the hands...fingers, joints, etc. My right hand in particular
is very bad right now...especially the little & middle finger and thumb. The
index finger is beginning to join in also. I have a hugh "knot" at the thumb
joint. I have not been back to my Rheum since this started but am due next
week...the pain in that hand is throbbing most of the time...I am spending
alot of time on the mouse at work here lately so I think that is
contributing. The thumb is very, very swollen...exactly how much swelling
can it take before it exlodes!! LOL... Is this something that I should call
the Rheum about or wait? Has anyone else "been here" with the hands??
Thanks so much!
Shelley in Monroe, MI

I developed an allergy to metal(nickel)when I was 17.I recently
discovered that my "rash" was really P.I have very mild P.I wish the
PA was as mild as my P!I always thought that I just had sensitive
skin.I'm allergic to most soaps,perfumes,and cosmetics.It seems that
I keep developing new allergies.Do any of you have
allergies? Diane C.

Hello all,
After reading all about leeches and maggots I thought
I should write my positive experience with other
creepies.
When living in Africa I worked for the Red Cross and I
often had to visit far away villages. Once giving
nutrition and baby care classes in such a place I
witnessed the following. A man had cut himself badly
with a badza (hoe) and had a deep cut on his leg. Of
course there was no clinic nearby and I did not have
any suture material with me. The local chief, who also
was the witch doctor, sent somebody to collect a pot
of soldier ants and invited me to come and see what he
did.
He joined the two lips of the wound with his hand,
grabbed a soldier ant by the neck and let him bite the
skin. He then squeezed the body off. This way he gave
five "stitches".
I had the opportunity to see the patient some weeks
later and the scar could not have been better if it
had been made by a plastic surgeon.
Another, less pleasant, experience I had when I got a
little pimple on my arm and one on my back side. I did
not know then that you had to iron all the clothes you
had dried outside. There is a fly which lays its eggs
on the clothing and when you put it on the eggs
penetrate your skin. I cannot tell you the horror I
felt when I saw the "pimples" moving. The girl who
helped me in the house was in stitches when she
squeezed the blighters out and I sat gagging. Since
then I ironed everything, even nylon!
Hope I have not spoiled anybody's appetite.
Greetings.
Margaretha.
Tu correo gratis en MixMail http://www.mixmail.com
Inicia tu navegacion en http://www.ya.com

Hi All
Yes I did explain in a previous post, how the Poll was arranged. I wanted to
compile it on one page, but the system would not allow me, unless I scrapped
it and started again. The question took over one month to compile with help
from two other members, Margaretha and Donna, who I asked to to help. I also
used them as 'sounding boards' just to see if the questions were logical.
I am NOT IT literate, after last night post I am wondering it I am literate
at all.
I do apologise for the format of this Poll, but I hope you will all answer
all the questions. It would be excellent if this Poll drew a few conclusions
about PA and already a few patterns are emerging.
It only took me FORT TWO minutes to post all those questions, wonder if that
is a record for the slowest set up?
Meanwhile my Mouse has just lost his balls and Hermes is trying to locate
it!
Love and God Bless
Gillian
To be blind is not miserable; not to be able to bear blindness, that is
miserable.

O.K. everyone, I did the poll when it was first set up. This is how I got there. Go to the PA support page http://www.wpunj.edu/icip/pa There is a big green box to the left of the screen, click on PA list archives, then the egroups page shows up. Look to the left of the screen, scroll down, and you will see a list, click on the word POLLS. It is about middle of the list. Then the poll that Gillian created is there-several questions and all have a date created on 8/14/00. I just kept clicking back and forth to do it. I don't know if there is a shorter/quicker way. It takes only a few minutes. Go Vote!! Cassie

Hi All
The blue thing is here only it came out Purple?
http://www.egroups.com/community/PsoriaticArthritis
Once on that main page, top right hand corner it states "Sign In" Click that
to reveal the box. Type in your e-mail address and Password. That will then
give you access to the POLL on the left side of the page. Click Poll and you
are off.
Wish I could give you the Poll wer,wer,wer, blue/purple things, but if I did
reckon they would come up under MY e-mail address and password. Therefore
you could not vote, because I have already voted.
Hope that helps!
Love and God Bless
Gillian
To be blind is not miserable; not to be able to bear blindness, that is
miserable.

http://www.egroups.com/polls/PsoriaticArthritis
That is the link to go to the poll page. Now, you might be asked to
sign in first before you can get to that page. Do you remember your
addy and your www.egroups.com password? Good luck, Pat B

First of all - Allayne , Just some advice here for your hearing..... I was
surprised that the judge didnt know anything about my condition.. He starts
questioning you like he has no clue about your condition...Even though your
lawyer or doctors probably gave him all the papers...They seem not to
care.... He just asks you alot of questions and you really have to show this
guy how much it affects and hurts you... Just recall all the pain in your
past from all of this and let it ALL come out on that day... Dont be mean to
him, just let him now...... Say the word "pain" alot....and tell them about
sleeping problems and all that.... Crying would help too... I was so
disturbed last night to see that I recieved emails from people who went to
the government doctor and they even told them that they will tell the judge
that you are disabled..... And the judge STILL rejects it..... I had a very
hard time last night falling asleep after reading that.. It just seems like
they dont give a sh*t , not one bit..... Like I said, they'd rather we kill
ourselves so that they wont have to pay us.... Their evil as*holes... And it
is so aggravating...... Well, atleast over here it is...Back to the
judge/hearing , It only lasts like 15-20 minutes....- my session that is....
Oh, and they have a tape player so they record your conversation..... so
that when the judge makes his final decision he could listen to the tape
again.... Like I said thats how it was with mee, it could be different for
you..... And remember when you go to the hearing , the judge knows nothing
about your condition... So you have to tell him everything and fit it all in
within those 20 minutes before the tape player stops.... My viewpoint is
that they dont want to hear all the bad stuff and your disabilities.....
I wish we could form a March or something against the government and S.S.
disability.... Any volunteers? Especially during the reagon years... Reagon
cut off so many people of their disability , and they ended up killing
themselves because they had no other way to get money..... Shows how great
this government is , huh? Sure you have to give them money when you work,
but they dont want to give it back to you when u need it.... We've gotta
step up and do something about this....there are so many people out there
that are in the same boat...

Hi All
Well we made the 400th member! Someone crack open the Champagne!
However LESS than 40 people have taken part in the POLL! In order for us to
draw some real hard FACTS from the Poll can I plead will all of you to
attempt it. Quick calculation 10% of the members have completed the Poll,
90% have not bothered!!!!
Love and God Bless
Gillian
To be blind is not miserable; not to be able to bear blindness, that is
miserable.

Hi ALL
Allayne
That is just what I was asked to do on my Initial Rheumy appointment in
England. At the time I had a frozen shoulder, so why bend forward? However
now I think it was to see if I had AS? Mind you he said nothing and I wished
he had told me about AS at the time!
Mike
I am not up on the S.S. system in America. However what I do find
interesting and I hope the other members will join in here, "Are any of the
members residing in America on S.S.?"
If one other member is on S.S. with PA, surly that is a precedent?' The
health Insurance or Company or State have already granted S.S. for PA, so
why is this not just automatically given now?
I faced an uphill battle when I returned with the Evening Primrose Oil. This
was prescribed by a Doctor, albeit in England, but was NOT on the list of
prescribed 'drugs' here, therefore I would have to pay for it out of my S.S.
However my Physician told me to go to the Health Board and ARGUE my case! So
I did! I tackled it from this angle. "If I do not take the EPO, chances are
I will be back in hospital TWICE a year and have to take conventional drugs,
PRICED at, as compared to the EPO at. Eventually they saw the SAVING, Tax
payers money and that is how I pushed it through. However I did not then
realise that once it was added to the prescribed Drugs list, all the other
doctors here would also prescribe it?
Yes it is a joke, that a Patient pushes for this treatment and once is has
been accepted, all the medics say, wow now we can prescribed it for various
other conditions. One would assume the medics would PUSH for it!
Obviously that is not the case!
Anyway I cannot comprehend all the people who are involved in claiming S.S.
The bottom line "Can you work?", the answer, "You CURE me and I will be able
too!" The answer, "There is no cure!"
Love and God Bless
Gillian
To be blind is not miserable; not to be able to bear blindness, that is
miserable.

Hi Mike,

I'm right there with you, friend. I was turned down for SS disability 2 times, also. My attorney says this is normal. We do it a little different in my state, MS. I was sent to their doctors before the hearing. I went to the psychologist first. He asked some really strange questions. I was having a really bad flare and was in a lot of pain. His office was on the second floor. The elevator was in another part of the building, so I had to take the stairs. I was almost in tears by the time I got to the top. Then when he asked me who the president of the US was and what day it was, I just about lost it. He made me do math in my head and had a list of questions that he asked. I don't know how he judged my condition. I had to sign a form to have the results sent to my doctor, but he hasn't gotten either of them yet. I went to their rheumatologist, who was in another town an hour's drive away. My husband had to take off from work because I can't drive that far. My
hands go numb. I was only in his office for about 10 minutes. He didn't ask me any questions. He made x-rays of my back and my knee. He asked me to bend forward at the waist. I was limping from being in the car so long, but he didn't ask me why.

My hearing is scheduled for September 26th. Please keep me in your prayers. My disability insurance from work has still not paid anything, and I haven't worked any since February. I received a letter last week saying that my family leave was up and I am no longer an employee. Yes, it is very hard on the self esteem. I managed a branch bank. We went through a downsizing and I had to help in the teller window and stand 8 to 10 hrs a day. I had to do all my other duties between customers. The stress certainly didn't help things. I loved my job and was very good at it. There goes 11 years of faithful service down the tubes. Guess I sound a little bitter. I am still working through the depression. I hate trying to tell someone who knows nothing about this condition that I may look"Normal" but the pain and fatigue is debilitating.

Sorry for the long letter, but I needed to vent.

Allayne

Hi Laurie
If Mark has Polymyositis he would test positive to the autoantobodies in his
blood tests.
However his blood is normal? As to if the rash is psoriasis, well patients
with Polymyositis also have Dermatomyositis, red blotchy skin, yes
especially on the face.
I cannot understand why they would put him on MTX?
MTX is a drug for PA and RA not Polymyositis and Dermatomyositis! Unless he
just has straight forward PA and not the Polymyositis.
Marks CK level at 24 would be considered NORMAL. If it read 18 then they
would say it is low! The amylase level would have to be READ in conjunction
with his other blood test results, which are all NORMAL, therefore it means
NOTHING, just a blip in the system.
I could not locate the EMG results, unless it is stuck in the system. Can
you please forward me a copy?
Love and God Bless
Gillian
To be blind is not miserable; not to be able to bear blindness, that is
miserable.

Hi Patty
hour or two a night<
Mom did the same with me, I have photographs of me nude to prove it.
therefore I took your Motherly suggestion, started undressing in the living
room!
Suffice to say Mom said, "You do not look so cute at 41 as you did at one
month!"
Love and God Bless
Gillian
To be blind is not miserable; not to be able to bear blindness, that is
miserable.
Moderator note: thanks for the visual, Gill! Patty PHDRWD@...

Hi Shelly
Correct PA is not RA! PA is not rheumatoid!
As to how long before they catch on, within five years, mark my words!
Love and God Bless
Gillian
To be blind is not miserable; not to be able to bear blindness, that is
miserable.

Hi Tracy
I love Conundrums!
taking MTX?<
Well what came first, the Chicken or the Egg? In other words IS your
Psoriasis under control because of the MTX???? Therefore if you stop taking
MTX, will the Psoriasis flare????
If the Psoriasis was minimal before MTX, perhaps the MTX has stopped it
flaring?
Who wants to be a Rheumatologist?
suppressant?<
Inside each of us we have an immune system, white blood cells that circulate
in with our red blood cells. There purpose to 'protect' us from foreigners;
bugs, bacteria and viruses. They do this by manufacturing a protein known as
an antibody. So if we inhale the flu bug [an antigen] the immune system is
triggered and manufactures an antibody. World war three, antigen/bug Vs
antibody/immune protein. While they are fighting, we get the fall out, aka
symptoms!
However, with RA, they locate an 'autoantibody'. 'Auto' meaning automatic.
This autoantibody is a immune protein but it fights with our own body cells,
not any foreigner, antigen or BUG. This autoantibody is out of control,
murders its own side, us.
Therefore if a Patient is screened for autoantibodies, Rheumatoid Factor,
AntiNuclear Antibody just to mention two, then WE know that this persons OWN
immune system is targeting itself! We then say this patient has an
'autoimmune disease'.
To date NO autoantibody has been located in the blood of patients with PA!
Therefore we class PA as a seronegative disease. [seronegative; sero blood,
negative no autoantibody located]
The real breakthrough came with HIV/AIDs. It was noted than Patients with
full blown AIDs, develop Psoriasis in the later stages, along with
Arthritis? However before being infected, these patients were healthy?
AIDs patients have NO IMMUNE system.
Therefore what is the connection?
AIDs patients do not died from AIDs, but an 'AIDs' related condition,
pneumonia, an infection they cannot fight off. AIDs patients are open to all
kinds of infections, because they have no immune system. Therefore could it
be an Infection, which 'triggers' the Psoriasis and Arthritis?
While we may be 'genetically predisposed via the HLA system to develop
certain conditions, we might never get them! I am youngest of four, I and
THEY have the HLA-B27, associated with AK, but only I have PA!!!!!
They are all extremely healthy!
The theory, people with PA have a 'hypersensitive immune reaction'. Mom
could get the Flu, but her symptoms are mild. I contract the same bug and it
lays me up for a full week. Once this immune reaction is triggered, tis hard
to recall it. When the arthritis is active, the white cells increase. When
the arthritis goes into remission, the white cells decrease! Therefore the
ONLY way to decrease white cells, suppress them!
MTX has been used for Psoriasis for many years. Likewise as an immune
suppressant in RA, it does just that, suppresses the immune system. Logic
therefore will dictate, that MTX being helpful for Psoriasis and RA, should
give some benefit in PA!
Viagra was developed as a drug for High Blood Pressure! However when it was
on clinical trial, the 'side effects' were............noted. When the trial
completed, the results showed Viagra was useless for High Blood Pressure, it
did not work! They then turned there attention to the 'side effects' and
thought, well why not! Having invested millions into the development of
Viagra for high blood pressure, the alternative was to start again. However
they chose to develop the side effect nature and clawed all of the research
money back.
Most drugs used in PA, were originally used in RA! If they worked in RA
chances are they would work in PA. If they failed in RA, chances are they
should work in PA!
To my knowledge, except the recent vaccine for Psoriasis, very little
scientific study, or drug study is being conducted for PA. Reason, very few
people have it, therefore chances of clawing the investment capital back is
zero!
Hope that helps?
Love and God Bless
Gillian
To be blind is not miserable; not to be able to bear blindness, that is
miserable.

Hi all..... I got rejected for s.s. disability twice and then went to see
the judge on may 11th....well, after I saw him he said he wanted me to see a
government doctor before he made his final decision.... Its been over 3
months now and the appointment has finally been made.. Its during the first
week of september... I forgot exactly what date, its upstairs..... But i'm
getting nervous already... My lawyer said that the psoriatic arthritis that
I have wont "win" it for us.... So, he told me the mental condition that I'm
in will...hopefully...... I'm on xanax and serzone....and for PA i'm
taking methotrxate and sulindac.... I'm only 25, so I know it will be
hard... But has anybody been to these doctors yet? I heard their a pain in
the ass...and the last thing I need right now are more as*holes to aggravate
me about this... Are they going to try to pick at me and find the slightest
bit of hope that i'm not disabled? I really hope not.... And it also drives
me crazy that my lawyer or the judge has no clue how much pain and fatigue
PA causes me... I cant fall asleep until 3am every night... And I sleep so
much during the day.... i'm panicky and depressed most of the day.... So do
I have to be a total basket case to get my disability approved? With my
luck, they'll probably institutuinalize me or something, if i'm like
that....... Any help would be appreciated.... thanks
mike

Hi Paul
Please give your Rheumy a nice big kiss from me. [OK Shake his hand. Paul
his hand, not his neck!]
MTX is more tolerated in RA over long periods. The dose is different,
'larger' and recent reports state no liver damage. I guess this is because
it is honing in on the Rheumatoid Factor in the blood, knocking it for six.
Yes PA operates differently! RA is straight forward immune complex targeted
at the actual joints. Therefore MTX is targeting the joint immune complexes.
PA, well it is what they term 'soft tissue'. Muscles, tendons ligaments
become inflamed, making the joints unstable. If you continue to use unstable
joints, well the joint will rebel, a by product if you like.
If you look at Psoriasis as being inflammation of the skin, chances are the
muscle, tendons, ligaments below the lesions will also be inflamed.
Food for thought?
Love and God Bless
Gillian
To be blind is not miserable; not to be able to bear blindness, that is
miserable.

Hello David,
You wrote:
"I have also been
Those red and itchy bumps are in my case always the
beginning of a P outbreak. I immediately put Dovonex
on them (even if I suspect it might be a bug bite) and
then they disappear. If I would not do that they would
grow into full blown lesions within two days.
Greetings.
Margaretha.
Tu correo gratis en MixMail http://www.mixmail.com
Inicia tu navegacion en http://www.ya.com

Hi Michelle and everyone! I started Remicade IV 2 weeks ago and go for my
second infusion this afternoon. I wish I could say that I feel like a "new
person", but I don't. After about 3 or 4 days, I could feel and see a
noticeable difference in my feet and hands (they were pretty swollen). They
are still swollen, but not as much and the pain level is less. I still have
my bad days (spent half of this past Sunday in bed) as I guess you all have
them too. Hopefully as it builds up in my system, I will get better. I am
also on MTX, predisome, folic acid, lodine XL, closipam, and pain meds when
needed. I've had PA now for a little over 3 yrs. I will keep you posted on
the Remicade. Take care everyone, Teresa

Hi All, Shelly wrote that "I think the PA takes away brain cell function towards the end of the day because I find myself forgetting things & being confused at work by 4p.m. or so... wonder if anyone else is like that? I just wanted to comment. I'm not sure if PA does take away brain function or not but in my opinion, I think we get forgetful or confused due to being tired or fatigued after working for a long day. Any time you are real tired you tend to not think as fast or clearly as you would if you are feeling rested and and not pressured to push yourself to get something done. I believe being tired/fatigued does affect us more than others who don't have PA. I find myself requiring more time for rest and sleep, especially after working. Cassie cartman@...

Hi Jill
And welcome to the group.
Thank you for your very constructive message, it really took me back to my
Rheumy, questions, no answers and crying for help.
Initially I have to stress, 'There Is No Known Cure For PA'. I think it is
important to keep that in mind, as then the rest of the mystery falls into
place.
Attitudes of Rheum's is well documented in Donald McPherson Brownes "The
Road Back" and was a eye opener for me. Now just put yourself in your
Rheum's position. He has X amount of patients, with various arthritic
conditions, of which he knows he cannot cure! He knows the drug treatment,
start with NSAIDs, move to Immune Suppressant and after that what? The old
cliché "Well I do not understand, because this drug works for my other
patients" is the get out clause. You now leave thinking, I must be abnormal,
because according to the expert, this drug worked for everyone else except
me. Just by reading the e-mail here, certain drugs work for certain people,
then they seem to loose there impact. Once you have been through the Rheum's
treatment and all failed, apart from holding your hand, he has no magic pill
left up his sleeve. However he is not going to tell you that, as you will
probably end up severely depressed on drugs for that. So the quick "Hello
how are you?" followed by "Goodbye" appointment becomes the norm. Been
there, done that, saw the light, got out! Ultimately why should he bother?
Bottom line is, there is no cure and eventually all the drugs you try are
going to fail. If they did not fail you would be CURED! PA is a remittent
condition. You will have flares and remissions. I am having problems with my
back at the moment, but am not rushing off to see my Physician, let alone
Rheum. As my Mom says, "What is the point, they cannot help you, so why
waste your time and there time!" Mom used to be a Nurse. Rest and easing of
physical activity will eventually solve the problem. Sure I could demand a
X-ray, injection, operation, but I cannot see the point. The body has the
ability to solve problems, as long as I allow it too!
Therefore when you are in a flare, the Rheum can give you a cortisone
injection, which will assist, but you then run the risk of further damage.
Pain is the bodies wake up call to slow down. By having a injection, well
you speed up, use the joint more because you cannot feel the pain and cause
more damage. Now the Rheum knows this and he also knows the injections are
painful, but if you WANT relief, he will relieve your pain. However he is
not going to admit this, "You are a being a baby" is always the answer.
Now if I was a Rheum, had X amount of patients appearing moaning about Pain
and I knew there was nothing I could do for them, I would probably be on
anti depressants myself. My Rheum has 16,000 patients, by 15,999 he has had
enough, then I walk in! They start off with the BEST intentions. Who knows
the MTX might just work! However as he prescribes and it does not work, time
and time again, well my Rheumy looks old for his years and is bald.
Having realised this, I decided to work backwards. I am not taking the drugs
now, therefore he cannot pass me back to my Physician. If the health gets
serious in the future, well then I hope to have years left to take the drugs
and gain some benefit. Most people work the system, take the drugs now, do
not gain that much relief and end up in old age in severe pain. Rather put
up with the pain now, in my youth and hit the drugs when I can no longer
cope.
Bakers Cysts are connected to arthritis. Why I do not know? I think I
already have a small one, although am ignoring it.
Removing Fluid. I also have an effusion on my right knee, which they wanted
to drain in 1996. I was in hospital a doctor arrived with a syringe and
tray. That was the first I knew! However I explained that I had promised my
fluid to another hospital, so they could not have it! I had read somewhere
that the main drawbacks of having fluid removed, infection. You are opening
the joint up to infection and that is not good. I still have my fluid, my
effusion and it does not cause me any real problems. Doctors do not like
draining or injecting joints. If they take too much fluid out, well you have
no cushion for impact and could end up with bone grating against bone. If
they put too much fluid in, they could rupture the synovial sac.
Strep Throats. there is a theory floating around the medical world, that
strep bacteria causes arthritis. I for one note that when ever I succumb to
an infection, the arthritis is triggered. At the moment I have a cold sore
on my lip and the back is agony! Is there a connection?
Afternoon Naps. I got up at midday, had to take a nap at 7pm, was in bed for
midnight! I spent less than six hours up and around yesterday, most unusual
for me. However pain is draining and whenever I am in pain, like I am, I get
exhausted faster, need more sleep, rest!
Stress. According to Rheum's Stress, Infections are to be AVOIDED at all
costs. Both have a detrimental effect on PA!
Yes it is a wheel and we are the mice. The pain causes stress because we
cannot do what we usually do. When we go to work we get more stress. At
home, well loved ones do not understand, "Gee you look well", more stress.
Stress in turn make us feel pain more and we then get stressed out because
we are in more pain!
Future with PA. No one knows, it is very much a lottery! The hole through
the bone in your toe could be due to the injections. I was in a severe flare
in 1993/94, ended up in a wheelchair in hospital. However over the past two
years I have not had a swollen joint. They injected my shoulder for
calcification and apart from that, my shoulder joint showed NO arthritic
activity whatsoever. Yet in 1993/94 they wanted me on MTX because they told
me I was a severe case! In fact I am doing better now without my Rheum's
help than ever before. Go figure.
Enbrel. Sorry cannot help you on Enbrel. Ask me when I am 60, might be on it
then!
Muscle Weakness. Well I was told by my Physician many years ago, that
ATROPHY is part of my arthritis. My back down to my waist is void of muscle,
however I hope I have stopped it from the waist down. Having said that, I
could not open a bag of sugar yesterday. I could have been pulling until the
Millennium, but the strength in the hands was not there! Therefore I got the
BIG carving knife and stabbed the bag until it bled.
Sinus, sorry cannot help you.
Antibiotics. Well in the old days they thought arthritis was caused by your
teeth, so pulled them. Honest! I assume Enbrel is last line Immune
Suppressant, therefore your immune system is suppressed. In addition you are
open to all bugs and we know certain bugs live happy in the mouth and
throat. I assume if the Dentist disturbs these bugs, well chances are you
will get an infection. I also watched 20/20 last week about water quality in
the Dental Surgery. They use the water when drilling your teeth and it can
become stagnant in the pipe. Bug can then grow in the stagnant water.
Well hope that helps?
Love and God Bless
Gillian
To be blind is not miserable; not to be able to bear blindness, that is
miserable.

Hi Tracy
Yes that is what they used to believe. If the psoriasis flares, it triggers
the arthritis.
That is why MTX is considered a treatment. The theory, if you can control
the P or clear it up, the arthritis will follow. I have seen only one case
and Mom was with me. A young man covered in P, from head to toe and flaking
severely. Mom thought it was disgusting! I asked him what the problems was,
is he under stress, the answer, "No I am fine". I even took him to my
Physician for help, drove him there because he could just walk. Eventually
he left the area and no further contact. Then in the local newspaper, he was
up in Court for driving a van without Irish Tax or Insurance! He resided in
Ulster/Northern Ireland, found a job here for six months. However he forgot
that he could not stay in the Republic, without the car tax and Insurance.
No doubt when the Police pulled him over and told him he was breaking the
law, he went into a stressful state and it caused the P to flare. Once that
happened the A followed. He was NOT on any drugs for anything at the time,
this was all new to him!
Well again they do not know. They have what they call clinical symptoms. P,
nail pitting, no autoantibodies located in the blood. However many of us
fall outside this 'simple' diagnostic criteria. When I erupted in P and knew
about Dennis Potter, I asked the Dermatologist if I would be like him. He
tossed my hair and replied, "Mr. Potter is a unique case, chances of you
succumbing are one in a million!" Guess what, he was wrong!
The medical people like to label arthritis. RA,OA, Lupus and so on. Some 50
arthritic conditions to date. In order for them to TEACH medical students,
they break up Rheumatic Diseases into 50 clinical diagnostic criteria's.
Apart from the patients symptoms, clinical tests are conducted. However many
conditions 'overlap'. For example it is possible to have Rheumatoid
Arthritis in conjunction with Psoriasis. Both conditions are separate, but
both conditions can be seen in a single patient. In this patient the
treatment for the P, would be as if this patient just had P. Likewise the
treatment for the RA, would be as treating a RA patient. However this
patient does NOT have TRUE PA!
I was diagnosed with PA, but test positive to the Rheumatoid Factor, located
in RA! This is NOT in the medical criteria for PA! However the joint
involvement is nothing akin to RA! I also test for Lupus, but my skin
condition is Psoriasis and not Erythema. Just to add to the confusion, Lupus
can effect the lungs and kidneys, while true PA does not. Therefore they are
watching my lungs and kidneys. However they still consider me to have PA!
I assume the breakdown would be 50% PA, 25% Lupus, 25% RA.
Ankylosing Spondylitis is another separate condition. Can stand alone, many
patients have it. However one patient could present with AS and also
Psoriasis, but clinically would not have PA!
Meanwhile some patients with true PA, have spinal involvement that resembles
AS! Likewise they have PA, not AS.
In the annuals of rheumatic Disease, PA as a SEPARATE condition has only
recently been defined. Recently the last 30 years, while a majority of the
others were defined 50-70 years ago. From my understanding, they had
patients with PA, but decided that people with Psoriasis, a separate
condition, fell into RA, OA, Lupus, AS. Therefore they treated them like
ordinary P free RA patients. However as the x-rays showed different disease
progressions, then they thought, perhaps this is a separate condition all
together.
I find the subject extremely interesting as yet they still really do not
know, because not enough research has been conducted.
Love and God Bless
Gillian
To be blind is not miserable; not to be able to bear blindness, that is
miserable.

My RD told me a couple of interesting things recently:
1. People taking MTX for PA have 10 times the risk of liver damage
compared to RA.
2. PA is proving to have a markedly different biology to RA, and
recent research has suggested that it is (I'm trying to remember what
he said now) (en)capsulitis, affecting the tendons and ligaments, and
the arthritis is more of a side effect / by-product.
Paul. (Who was scared shitless of MTX a year ago, and now is very
pleased to have made its aquaintance ;-))

I'm a 42 year old woman in Indiana and I have PA.I have pain in my
knees year round,but most of my pain goes away in the winter in my
other joints.Each summer I'm amazed at how much more intense the pain
is and how many more joints are affected.August is my most painful
month.I can't wait for winter!Does PA affect anyone else like
this? Diane C.
Moderator note: I've found humidity at any time of the year makes for an
unhappy me - swelling galore! Patty PHDRWD@...

WHERE DO YOU GET YOUR ENERGY? I work 32 hrs in three nights straight. I do alot of walking and standing during my shift and have to take 5 minutes here and there to sit down. I can tell this job is getting the best of me but can't afford to stay home either. Now, school started back and I'm driving kids everywhere before and after school. I seem to be the main driver all week for the carpool. Not much time for self right now. Maybe it will settle down soon. Bottle that energy and send it my way. I could not do a 100 miles on an exercise bike if I tried! But to you that can, KEEP ON MOVING. My thoughts are in doing more exercise but my body is not cooperating. **** I've got to get up and move. I can't even tolerate sitting for a long time. Cassie

I am a little odd. When I take prednisone I lose weight. It also
seems to help my depression. I feel much better. I am currently
taking 7 mg a day. If I take less I can't walk. I would like to
take more but I keep hearing about the bad side effects.
What exactly are the bad side effects??? Maybe I need to make some
tradeoffs with other things I am taking that are even worse for me.
Diane
Toasty in Texas

Hi Laurie
Yes you are correct, hate to say it but this condition is 'Fatal' and
according to my medical books 'in a short time'.
Husband cannot however have normal blood tests will be showing a range of
specific markers in his blood. Rheumatoid arthritis, Systemic Lupus
Erythematosus and Systemic Sclerosis. The dermatomyositis pertains to the
red blotchy skin, this is not Psoriasis but an erythematosus.
I am surprised that they originally diagnosed him the PA, as the blood will
be showing these markers especially as they are correctly now performing
EMG.
Mind you the onset according to my book is sudden and the prognosis is not
good.
As for treatment? Well there must be another e-mail support group pertaining
to Polymyositis and I would really be asking them what treatment is
available.
Thankfully I just have PA, so cannot really help you with any treatments as
this is a different Rheumatic Condition. However I wish you they best I am
sure there must be other people with this condition on the e-mail support
group. They will be best advised over what you should do, where to take Mark
and what centres are available to assist you. Gee this came as a real shock
to me, as you said his blood tests were normal. I cannot believe the doctors
mis-diagnosed him, really stunned.
I will keep Mark in my Prayers. Have a Missionary Priest visiting next week,
so will arrange a special Mass for him.
Love and God Bless
Gillian
To be blind is not miserable; not to be able to bear blindness, that is
miserable.

My PA has always moved from spot to spot. Sometimes it stays in one
spot for a few months and others for a few years. But it always
moves around. Before I knew about PA I called it "traveling
tendonitis" because that justs what it feels like. Apparently my
version of the PA is where it attacks the tendons and ligaments where
they attach to the bone.
Diane
Toasty in Texas

Hi Adriel and everybody,
The moct common side effects from long term steroids (prednisone)
besides weight gain are: fluid retention developing " moon" shape of the
face, demineralization of bone/ osteoporosis (increases suseptability for
bone fractures ), thinning of skin which can cause it to be more easily
injured, supressed immune function due to it's effect on white blood
count)ncreasing suseptibiltiy to infection); it can cause an elevation in
blood sugar, especially problematical for diabetics); hair thinning and
supression of the adrenal glands.......... I think I remebered them all.
It seems all of the nasty chemical coctails so many of us need in order to
even minimally function have some pretty hefty side effects, so it is really
important to be monitored closely by a good rheumatologist!
***********
Re: PA is weird
Before I knew I started taking MTX, I had P that nearly covered my lower legs
along with a few isolated spots on my scalp and behind my ears. I had a few
bouts of neck and back pain and had terrible stiffness fatigue if I did
really strenous exercise.Then 2 years ago, my wrist, big toe joint got hot
swollen and red along with a very painful L hip and PA was diagnosed. I
started MTX and the biggest improvement was with the P, which is minimal now.
The wrist slowly improved and I have most of the function back ( also after
several steroid injections in it) The toe and hip still plague me, and
several finger joints have gotten swollen and stiff along with my lower back
to where gettting out of bed to actually functioning is a major event. All in
all, where things are at right now for me, I would say the P is really
minimal in comparison to the PA.
Wishing you all flakelesness, comfort and boundless energy !
Nancy in Wisconsin

Hi Tadel and Newjersey23.
too??<
Another strange thing. According to the medical text books, the Psoriasis
flares triggering the Arthritis. Well that does not happen with me. The
problem, I do not think the experts know!
Love and God Bless
Gillian
To be blind is not miserable; not to be able to bear blindness, that is
miserable.

Hi Margaretha
Medically I do not know?
For example the time I was falling asleep at work, were stressful times.
Also I could NOT smoke in the office, Non Smoking Company! I was going
through my Divorce, My father was dying from Cancer and the lower back was
painful. Juggling this lot was a feat in itself?
Obviously I ignored the pain and in hindsight perhaps it was the gnawing
pain that was draining me physically? I was not sleeping too well because
the X was 'stalking' me, followed me everywhere. Perhaps it is a combination
of factors? I was not on any drugs.
Love and God Bless
Gillian
To be blind is not miserable; not to be able to bear blindness, that is
miserable.

Shelly, I started on 10 mg. MTX weekly about 6 yrs ago. Within 8 weeks it had aken away all pain and inflammation, nd 95% of the lesions. I had no significant side effects. That lasted for 5 years. It is not working now, but it did give me my life back for 5 years. Five years I would not have had. Good luck!

Hi David Lilly
AND welcome to the Group.
Yes I have problems with using the Computer.
I have anxiety attacks while surfing as I know I am always going to end up
not where I am supposed to be. AND that is how I located this group by sheer
accident! I was looking for "Parents and Computers" as given out on the BBC
Radio 4 program. A wer, wer, wer, page which explains to Parents what type
of PC they should be buying for the kids, compatible with the education
system. I must have got the address wrong, because I never located what I
was looking for found the PA group instead! PC to PA????
Love and God Bless
Gillian
To be blind is not miserable; not to be able to bear blindness, that is
miserable.

I keep trying to figure out why I have PA in these certain areas only.. Its
driving me nuts.... I have the arthritis too but the psoriasis is only
around the nose, (inside my nose is dry all the time...I have to put like
petroleum jelly in there before I go to sleep to prevent a sinus infection)
, and in the corner of my eyes right next to where the eye ball meets the
eyelash.... It is very painful there to have P in that spot... I have to be
very careful putting a small amount of petruleum jelly over there so that it
wont get into my eyes... But thats exactly where the P is....right there in
that corner.... And everytime I go somewhere it looks like as if I just woke
up and didnt clean the protein away from my eyes..(that stuff in your eyes
when you wake up). Its such a pain in the ass.... I've always had sinus
problem..Like sinus infections all of the time....And its weird that the P
is only in that area... Besides one of my nails that looks pretty bad... I
heard of one person being cured by having his tonsils takin out ...... But I
dont know...There must be some kind of fungus in my sinus area that is
giving my immune system this kind of response...If only we had anti-biotics
strong enough these days to clear this sh*t up..

Please stop sending me e-mail, I have asked 3 times before may be I
have not sent my request to the right group, but I think That I have.
Mcnana3@...:
These addresses might help you:
Post message: PsoriaticArthritis@egroups.com
Subscribe: PsoriaticArthritis-subscribe@egroups.com
Unsubscribe: PsoriaticArthritis-unsubscribe@egroups.com
List owner: PsoriaticArthritis-owner@egroups.com
URL to this page: http://www.egroups.com/group/PsoriaticArthritis
Subscribing and unsubscribing is the responsibility of the individual member.

Can anyone give me an idea of how Methotrexate helped them with PA
(If it did)...I have just started in (2 weeks) and really want to
find someone to compare notes with:)
Shelley

Hi to the group,
Can anyone who is on Celebrex tell me if it gives you ' wind'. I have been
suffering really badly since I started taking it
Also are their any other side effects that you have from it?
Thanks
Dianne
Canberra . Australia.
moderator note: wind ooor gas blown up stomach could be an allergic reaction too
a med.
I took relafen (another NSAID) for a year before the tummy did a number on me
and
had to switch NSAIDS. Just a thought, was told it from this list:) Pat B

Hello,
I'm very happy to have just found this group.
I've read a number of the archived messages, and got some useful info.
If you don't mind, I would like to post a bit about me and my PA.
I have had P for about 12 years, and PA for approximately 8 years. I
take a drug called celecoxib (brand name Celebrex), which has only
succeeded in reducing my sausage digits. It doesn't seem to be doing
much for my joints at all. I have pitted nails, though haven't lost
any as yet. I have recently been extremely fatigued, with constant
(literally 24 hours a day) headaches, and my GP has been stumped. I
haven't seen my rheumatologist for six months. I have had a great
deal
of time off work, and am currently on a month's leave to try and fix
my current problems.
Two days ago, I got the results of more blood tests, including an
Erythrocyte Sedimentation. My GP has got me straight to the rheumy,
as
the result was high. My BP is ok. Should I be worried? I feel quite
relieved that perhaps I have an answer to my fatigue and headaches.
Sorry if I've rambled a bit, but it's nice to be able to talk to
other
people who know what I'm talking about.
Regards,
David Sheridan

Hi all
I'm back. Hit the wrong key and deleted membership. Finally figured
out what I did wrong. Does anyone else have problems using the
computer or am I just computer illeterate?

Hi Christie
1) Do not know, but probably at some point YES!
2) Started but majority returned to normal.
3) A week was the longest time.
4) No trigger, inflammation did go, but appendage has never been the same to
the eyes.
5) Yes the majority did return to normal.
My initial arthritic activity was a thumb, which my Physician insisted I
must have knocked? I could not bed the thumb at all and if I tried, the pain
was severe. However the swelling went down and the thumb returned to normal.
Next was the middle finger, swelled up, could not bend it and I also recall
it felt thick/solid/ hard? As if I had a hard lump of butter under the skin?
Again I was diagnosed with a knock? That is why I recall pondering on this
thickness? However the finger returned to normal.
The toe was very different altogether. It ballooned taking the big toe with
it. Soon the toe on the other side was upset. It was only then that I was
eventually told I had Arthritis, but nothing more specific than that. Over
the years the toes were always swelling, but always went back to 'normal',
or so I thought.
A few years ago while staying with cousins, I was wearing open sandals, Flip
Flops. My Cousin looked and said, "Gill why is your second toe, shorter than
your third toe?" Personally I never noticed it before, but she was indeed
correct. I replied, "Probably due to the arthritis".
Now on closer inspection, I would describe it as a small cocktail sausage!
Unlike its twin on the other foot, which is well defined and you can see
where the joints are, due to the creases in the skin, this toe is sausage
shape, not defined and no creases where the joints should be! However it is
not as such swollen, or red, let alone hot.
Hope that helps?
Love and God Bless
Gillian
Friendship can only exist between persons with similar interests and points
of view.
Man and woman by the conventions of society are born with different
interests and different points of view.

Angera, Just curious as to why you don't take your Folic Acid on the days you take MTX. I take it every day without regards to MTX. Cassie

Hi Shelly
Yes I have been known to get a few every month and am not on MTX.
I have not sort medical help, just try to ignore them. Eat on the other side
of my mouth. As to why I get them? I do not know, but before the A I never
had mouth blisters?
Love and God Bless
Gillian
Friendship can only exist between persons with similar interests and points
of view.
Man and woman by the conventions of society are born with different
interests and different points of view.

As a child eating American I would like to pass on the
following tips
for
preparation and cooking. First you should select one
of the fat ones
(they
taste best and are very easy to find here in America).
Not to mention easier to catch...
Courtney
=====
Courtney C McCullough
thelockhorns@...

Hi Patty Parks and all who have completed the Poll.
Initially thank you for your input and if you have not polled, please do.
Already a few patterns are starting to appear, which I find interesting to
say the least.
However, in any Poll some questions are 'placebo' and I am not going to say
which or what.
It only took me TWO MONTHS of study to locate KNOWN triggers and design the
Poll. To be honest I cannot wait for the RESULTS!
Love and God Bless
Gillian
Friendship can only exist between persons with similar interests and points
of view.
Man and woman by the conventions of society are born with different
interests and different points of view.

Kelly,

I also get mouth sores right before a flair. My first Rheumy didn't understand because he said they were usually a reaction to meds, but mine have been present since before I was diagnosed. I can tell how bad a flair will be by the number of mouth sores and how long they last. Glad to know that someone else has noticed this relationship.

Allayne

Th