For those who have Psoriatic Arthritis

The post about the liver having a better chance with the injections
didn't come true for me. My liver functions went up after being on
the injections of mtx. I would be leary of that statement.
Cassie,
At www.arthritis.about.com on the forums people have said that they
experienced swelling in the ankles/legs after taking Vioxx. Another
problem was soaring blood pressure for some of them. PatB

Hi Donna,
It's so good to hear you feleling a lot better than you did a few months
ago!!! How much EPO do you take? I started taking a 1300 mg capsule/ day
about 3 weeks ago. How long did it it take before you started improving?? I
am waiting patiently, but so far, I have been having 1 good week , then 1
bad one. My back has been giving me fits.
Nancy in Wisconsin

Hi everyone, Michelle here.(AKA CTNATIVE),
I have been having a lot of trouble with nausea and vomiting now that I am
back on the higher dose of Imuran along with the Arava and the IV drug I
tried that did not work after four infusions. Depressing. My doc is
"Flummoxed" to quote him directly. The psoriasis is at the worst it has ever
been. I just started on a stronger antibiotic to heal the cracks and
fissures all over the bottom of my feet and hands- and two days later I get
lyme green fingernails! Wowsers! What a nice halloween surprise- nail fungus!
I am having so much fun lately! Hope most of the rest of you are doing
better!!
Michelle
Visit my 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!

hi all, last night i awoke with a searing pain that extended from my
shoulder , my rib cage on the left side and down my left arm. my wrist was
brutally sore but i don't know if the burning was worse. i could not use my
left arm it was so heavy and in searing pain. i was scared witless and
almost woke the kids as my husband had left in the wee hours for work.(
4:30 a.m). to cry would have hurt. i positioned myself sitting up in bed
and wrapped a heating pad on my ribs so that it would contact my arm as
well...when i finally dozed i awoke again at 7:30 and the pain was gone. i
am premenopausal so i decided this was not cardiac and also the discomfort
(understatement) extended over a much larger area than i'm accustomed to
patients describing ....never have i heard a patient mention
chest,shoulder,ribs and arm. the heating pad did not make the burning
feeling worse...is this anything PA??? HELP!

Hi, I just took my first dose of mtx (10mg) and was
wondering if the stomach upset is suppose to last more
than a couple of days? It seems that it isnt bad till
I eat something. It has been 3 days since I took it
and feel fine till I eat something. Any other similar
things happen to anyone?
Judy

Hi Tom,
Welcome to the group- I know you will find a lot of support here. For
the past 6-7 years, I have had frequent problems with my neck- poor range
of motion, stiffness, and pain/ muscle spasms that runs from the back of
the shoulder up the side of my neck. I have noticed that this will flare up
after a feeling best described like a burning muscle cramp that keeps
coming back if I move my neck at all. I find one position where it lets up
and have to stay just that way for quite some time or it starts spasming
again. The pain will actually go up the side of my head and end up in a
nasty headache. Once this gets started, it can last anywhere from a few
days to a couple months. Xrays show spinal stenosis and compression of
exiting nerve roots at several cervical levels. I have been told that
surgery is inevitible, however, I will hold out as long as possible as I have
had long remissions. Flexaril has proven to shorten the flares and help a
great deal. Since I have been on MTX and taking NSAIDS on a regular basis,
it has not been nearly as bad. My lower back and other joints as well.
Nancy in Wisconsin

At the end of August, I increased my MTX from 6 to 8 pills a week (20mgs).
Since my increase I have been experiencing an increased involvement with my
PA, and my P. The pain in my hips, toe and other areas are new to me. My P
on my scalp is the worst it's been in many years. Also I have many new
"spots" of P. Has anyone increased their MTX and experienced a worsening in
their condition rather then an improvement? Could the increase have caused
a flare? This is driving me crazy. Thanks, Becky

30 Politically Correct Ways to Tell Someone Is "Stupid"
1. A few clowns short of a circus
2. A few fries short of a Happy Meal
3. An experiment in Artificial Stupidity
4. A few beers short of six-pack
5. A few peas short of a casserole
6. Doesn't have all his cornflakes in one box
7. The wheel's spinning, but the hamster's dead
8. One Fruit Loop shy of full bowl
9. One taco short of a combination plate
10. A few feathers short of a whole duck
11. All foam, no beer
12. Body by Fisher, brains by Mattel
13. Has an I.Q. of 2, but it takes 3 to grunt
14. Warning: Objects in mirror are dumber than they appear
15. Couldn't pour water out of a boot with instructions on the heel
16. Too much yardage between the goalposts
17. An intellect rivaled only by garden tools
18. As smart as bait
19. Doesn't have all his dogs on one leash
20. Doesn't know much, but leads the league in nostril hair
21. Elevator doesn't go all the way to the top floor
22. Forgot to pay his brain bill
23. Her antenna doesn't pick up all the channels
24. His belt doesn't go through all the loops
25. If he had another brain, it would be lonely
26. No grain in the silo
27. Proof that evolution can go in reverse
28. Receiver is off the hook
29. Several nuts short of a full pouch
30. He fell out of the stupid tree and hit every branch on the way down
Enjoy,
Patty B in the Pineywoods of East Texas

LOL!!!! Thank you! I needed a laugh! Diane C.

With this current flare of P and PA I think I might have a different
type of psoriasis. Usually I just have plaque psoriasis, but this
time there are spots that start out as a small pimple and then later
turn into a small spot of P. These spots are mostly on my arms,
legs, and torso. I seem to find at least one of these small pimples
a day and they are psoriatic by the end of the week. Anyone else
ever seen this?
Denise
Tempe, AZ

Hi Randy,

I am from Tupelo, MS, birthplace of Elvis Presley and first TVA city.

Allayne

Hi group...sorry about the earlier mispelling of pustular. Also many
thanks to Donna Conklin & Chris Carlson for your notes. Every bit of
info helps. Thanks again...Kathy

Hi...I'm new to the group, also new to the disease. I was just
diagnosed in February, 2000. I would like to hear from anyone who
might have puscular psoriasis, as I do. I'm a 52 year old female, and
am on Prednisone, methotrexate, & Enbrel. My psoriasis is going
crazy, and is now all over my body, not only on my hands & feet. I
would appreciate any and all advice. Thanks, Kathy

Dear Judy
When I used to take Methotrexate I was advised by my Rheumatologist to take
my entire weekly dose (7.5mg) together, before going to bed. You will always
feel a bit knocked out after taking it, and it seems to pass more quickly if
you have a good sleep. It also seems to be better to take a single dose
rather than staggering the tablets, as the latter basically prolongs the
side-effects. After a couple of months, the body seems to get better at
absorbing the mtx and the after-effects decrease. If you decide to take
Folic Acid supplements, take them a couple of days after your mtx dose, as
they tend to neutralise the effects of the mtx. While on methotrexate it is
worth looking after your liver, i.e. no alcohol or coffee, no fried food,
plenty of water, fresh fruit and vegetables. I never needed a biopsy, but at
the beginning you are advised to get fortnightly blood and liver function
tests (after three months this can be decreased to once a month and after
six months to once every three months). Watch out for dizziness, vomiting,
diarrhoea etc. which may indicate problems with blood cell production.
Good luck
Jonathan (Rome, Italy)

FYI,

The National Psoriasis Foundation (NPF) is having a Washington DC area meeting

on November 5, 2000 in Alexandria, VA at the Hilton Alexandria Mark Center,

5000 Seminary Road. Call (703) 845-1010 for directions.

12:00 - 1:00 PM Registration

1:00 - 4:30 PM Educational Program

4:30 - 5:00 PM Social hour with refreshments

To register, call NPF at 800-723-9166 www.psoriasis.org

FREE
Register early--limited space available! Parking - $3.00

Hear psoriasis and psoriatic arthritis experts speak

Ask questions during an extensive Q&A session

Talk with others who are affected by psoriasis and psoriatic arthritis

Meet National Psoriasis Foundation representatives

I have noticed that even though I have read my mail from you and then deleted
that I get the same mail like later that day or next. It is only in the last
mo. only a few times. The mail I have in my inbox now I read this morning.
Just though I'd mention this to you. Thanks for all your help and guidance.
You all do a great job. Betty Cleary
-----
Sometimes email gets backed up at "servers" enroute to delivery and posters send
more than one copy wondering what happend to their first post. When that happens
one moderator might approve an email and then another moderator might receive a
second copy and approve that copy. It happens, PatB

Hey. Unsubscribe instructions used to be included in the emails. What
happened???? I am getting so many emails that I need to unsubscribe....
:( Maybe at a later time I will be able to come back.
Michelle or Robert, please post directions to me privately. Thank you.
LeAnn & Blossom
Heart Bandits American Eskimo Dog Rescue
Railroad Coordinator
www.heartbandits.com
----
Anyone wishing to change their email options can go to www.egroups.com and sign
in using your email addy that you used to get on the PA list. Then on your "My
Groups" page to the right of "Psoriatic Arthritis" you can change your email
options to "web only", "single emails" or "digest". To unsubscribe click on
"Psoriatic Arthritis" and scroll down to the "unsubscribe" link.
PatB

Hello all-
I need some advice, and am hoping maybe someone has some info to help.
I just visited a new rhuemy on Friday because my reg doc was on
vacation....I had wanted to change my current meds:
MTX (6 tab or 15 mg/wk)
Folic acid 6 tab/wk
Ibuprofen (400mg 2x/day)
Prednisolone (10mg/day)
Voltaren (75 mg/day)
and increase the mtx because I'm still not getting any relief with
this round of drugs and its been 5 months...I haven't had any
improvement (last time the mtx started helping within 3 weeks)
but instead he's taken away the ibuprofen and the voltaren and added
two new drugs. (soliky and xanax)..
The Xanax is an antidepressant of some kind and I know it will help
to change my brain chemistry enough to help me deal with the
emotional stuff as well as help me deal with the day-to-day pain.
I'm fine with that...
But the second is: Sulindac (aka: Soliky, Clinoral)
He made it sound like it's a long-acting NSAID, he said just twice
a day, so it would be less pills than I usually take with longer pain
relief..so I didn't ask additional questions about it, (I'm familiar
enough with NSAIDs after 7 years of trying so many of them), but when
I got the prescription filled, it's yellow and chalky like a sulpha
drug..so it must be related somehow...but then I did a quick online
search today, and although I wasn't able to find much info about this
drug,..what I did find makes it sound more like a DMARD (although it
did said it would help reduce the pain and imflammation) and it
didn't mention anything about sulfur...
I started the new drugs on Saturday and ended up with a really bad
headache and pretty serious nausea all weekend...
With the mtx, I usually have one day of nausea, maybe a day and half
at worst...and I did take the mtx on Friday night, so I assumed it
was normal from the mtx.
But it's now Monday afternoon and I'm still pretty nauseous even
through the mtx should be well out of my system...so it must be one
of the two new drugs...
I want to give my new meds a chance...I'm thinking two weeks will
be enough...but if I'm still feeling this nauseated and headachy,
then I need to go back and change something...
I'm concerned that if this is a DMARD, is it really ok to be taking
my once a week 15 mg of MTX along with 200mg of this sulindac each
day?
What I want to know is:
1) Does anyone know what kind of drug this really is?
2) Does anyone know a really comprehensive website explaining
drugs (indications, usages, dosing, side effects. etc...)
I'm in Taiwan, so we don't get package inserts with warnings, etc..
as I would at home, and I really like to be informed..
3) Has anyone tried this drug? (my dosage is 200mg, 2x/day)
4) Has anyone tried it in conjuction with MTX or steroids
(prednisolone)?
Sorry this is so long, but I'm a little nervous and it can be hard
for me to get info or reach my doctor personally due to the language
barriers here..Any advice or suggestions would be greatly
appreciated...I've been pretty sick all weekend and I don't mind
sticking it out for a week or two, but I do want to know what's in
this medicine and what other fun side effects I can expect!
Thanks so much!!
Christie (the American in Taiwan)

Denise -
I used the combo for a couple years. It worked pretty well, with some good
(my balding head grew a little more hair), and some not so good (some
acne-like skin problems) side effects. It's definitely worth a try, and there
did seem to be a synergistic effect with the MTX to me.
Rob Glover

Hi All,
My name is Denise and I have had P for 21 years and PA for 10. I
hope to learn from this group to many questions that I have. Even
after having these problems for most of my life, I still have
questions.

Anybody have an elevated SED rate? Went to my rheumy today and she said
mine was 40. Normal for a woman over 50 is 30. And I'm over 50. Just
wondered.
Also, she confirmed the immediate need for the carpal tunnel surgery. Will
call tomorrow and make an appointment with the Orthopedic Surgeon. I have
to DX the MTX for 2 weeks but can go back on it then. I'm not looking
forward to the flare that I'm afraid that will induce but maybe it will be
of short duration. What I am looking forward to is relief from this
problem. I haven't had so much pain in the wrist and hand as I have
experienced total numbness thumbs and index fingers. When you are a book
keeper and have to count large sums of money every day, that causes a lot of
stress because you have to count it 5 or 6 times to make sure it's right.
Stress - flare - more stress - more flare and the circle continues.
Anyway, I got a promotion at work so now I don't have quite that bad a
problem. Guess they didnt' think I was doing too bad a job anyway, huh?
Course I didn't tell them either that I had a problem.
I read with interest about diets too. For what it's worth, I simply follow
what may body craves. For example - on MTX day, I have an unquenchable
craving for tomatoes (yep, night shade veggie) and seem to do well on them.
I also crave sweet potatos baked with lots of margerine - a great
antioxidant itself (the potato that is). With all the relief I've gotten
from MTX, I can't complain and I can't see a big difference in my diet. I
do high fiber which helps with Irritable Bowel Syndrome dramatically too.
So just what works for me - tisn't gospel!
I have a very weird system anyway. I can't take EPO or penicillin or sulfa
drugs or ultram or any number of other drugs and alternative meds/herbs/etc
so I have to rely on what works for me.
Take care now. I've rambled on long enough. CTS is hurting in spite of the
8 mgs. Decadron I had today.
Peace
Helen

I've seen other people complain of this. I get the digest, and I can always
see email addresses perfectly well (eg as seen below). I'm not an expert,
so all I can say is that it can't just be because it's the digest. It must
be something to do with your computer settings or your email software. I
use Outlook Express.
Date: Tue, 19 Sep 2000 03:01:47 -0000
From: "Steve Thatcher" <steve.thatcher@...
"The problem is that the email addresses are hidden and you can not find out
the email address of the sender."

To Larry & Rae Farrell

I'm from the "Show Me State" 8 miles south of the Iowa Border in Northwest Missouri!

Granny Patty/NW Missouri
Never Trust a Skinny Cook

All
While at the psoriasis.org page I found out about a live webcast regarding PA
for next Tues. Sounds very interesting. Check out this link. Also gives the
name of a rheumy who is an "expert" in PA--very interesting. Maybe this webcast
will finally indicate that PA isn't just a MILD disease. There are also
opportunities to ask questions either live or in advance. Maybe we can also
tell anyone who tunes in about our forum.
I plan to "tune in" next Tues to check it out! LaRita
You can visit this site at: http://www.healthtalk.com/rain/101700/announce.html
Sent by: LaRita ljacobs@...
HealthTalk Interactive http://www.healthtalk.com
Real People Connecting with the Experts for Better Health
1109 First Avenue, Suite 400
Seattle, WA 98101
(206) 233-0135 Fax: (206) 233-0236 info@...

Hello all,
I am still investigating the connection between
Arthritis and IBS and I came upon a report called
"Peripheral artritis in inflammatory bowel disease".
I'll send here part of this report where oral ulcers
are mentioned. If anybody wants the whole article I'll
be happy to forward it.
Greetings.
Margaretha.
Type 2IBD-associated arthritis is associated with HLA-
B44 and the MHC Class I Chaingene A (MICA), which may
be associated with polymorphisms in the
transmembraneregion and Behçet's disease, a key
symptom of which is recurrent oralulceration. MICA*008
occurs in 98% of IBD patients with Type 2 arthritis
and this group is also prone to oral ulceration.
Tu correo gratis en MixMail http://www.mixmail.com
Inicia tu navegacion en http://www.ya.com

Hi everyone,
I wanted to let you all know about a webcast that is going to be held next
Tuesday night (October 17th). You have to have Real Player to participate,
so be sure to download it soon if you don't already have it. If you want to
submit a question to the experts for the program, it says you can e-mail them
or call in advance. The link for more information is below. Take care, all.
<A HREF="http://www.healthtalk.com/rain/101700/announce.html"
Psoriatic Arthritis: Hope Through Knowledge and New Treatments</A
Kim

In a message dated 10/10/00 11:57:47 PM Eastern Daylight Time,
PsoriaticArthritis@egroups.com writes:
<< but your list of drugs didn't include any DMARD
- just wondering if your doc. had discussed MTX or Enbrel with you?
Take care,
Tracy
Hi
The doctor has not discussed MTX or Enbrel with me yet but I think it's
coming. I have a follow up on 10/25 and will see what she says. I just
wanted to thank everyone for their responses to my questions. It's
comforting to know that I am not alone.
Jen - in Connecticut

Bunny...I lived the same life. Mom always rubbed vicks....and swore I
would get pneumonia the next morning if I didn't wash it off well!! Mom
always had her own thoughts. It is wonderful to aid in breathing when
one is congested. Jayne

Hi Amy,

It is good to know that someone else noticed the mouth sores before medication. Could this be a new branch of the PA family tree? Thanks for the tip on mouthwash.

Allayne

Allayne,
I have the same experience with mouth sores. Everytime I would get sores in
my mouth my arthritis would flare. And like you the more sores the worse the
flare. My doctor had never heard of it either. So I guess we are two of a
kind. I don't have as bad of a problem with the mouth sores since I went on
MTX however, I rarely have flares since going on it also. But when I do have
flares the mouth sores come before them. Now that my arthritis is somewhat
under control I am able to tell when a flare will hit because of the sores.
When I was out of control I had the sores continually.
Shelly
in St. Louis, MO

What about what I call "lightening pain"? Am I the only one who has it?
Pain that hits so hard and so fast, right out of the blue, and it knocks you
almost off your feet. I have learned to live with the all over pain, the
constant ache, but "lightening pain" is something I don't think I will ever
get used to.
Shelly
in St. Louis, MO

Amy recommended Standfords Mouthwash for my mouth sores. many people have
mentioned that MTX can be the culprit for these sores (and thanks for all the
responses). as I am not on MTX, the sores must be from something else. before i
call my doctor does anyone know if this mouthwash
could help with mouth sores caused by other, mysterious (stress?) causes?
thanks,
barb

Hi guys.... My hand started to flare so bad that I ended back up at the dr's
office. The Voltaren (diclofenac) was doing NADA. My hand was so swollen
and hot with sausage digits and everything. I could barely move it. SO, Dr
put me on Predisone. I am wondering if others have long term relief from
this, or if its only temporary. Also I am wondering if it is better to
continue taking your NSAID (in my case Voltaren) along with the Predisone
for the pain? The pain HAS gone down, and the swelling gone down
tremendously. At least I am able to type again and even write, with some
discomfort.
Opinions and feedback are greatly desired on this subject. Thanks.
LeAnn & Blossom
Heart Bandits American Eskimo Dog Rescue
Railroad Coordinator
www.heartbandits.com

I would like to know if you are not on MTX. One of the things I noticed before being diagnosed and before being on any medication was the relationship of mouth sores to flares. My mouth would break out several days before a flare. The severity of the flare would be in direct relationship to the amount of mouth sores present. So far, none of the doctors that I have gone to have understood this relationship. It still happens to a lesser extent even though I am taking folic acid daily. My mouth broke out several days ago and I am now in a flare.

On another note, I am having a liver biopsy Thursday. I haven't been on MTX yet, but my rheumy wants to put me on it. However, something is not right in my blood work that shows liver problems. I was sent to a gastroenterologist who ordered the liver biopsy.

Allayne

Jennifer, hi, which blood test are you referring to? Jayne

they are usually on the tongue , but sometimes the inside cheek or lip.
never visible, but absolutely agonizing
Hi Barb,
Are you taking methotrexate? One of the side effects of this drug is mouth
sores. I also think, but am not sure, that gold may cause this as well.
I take both and when the metho was prescribed, folic acid was as well. Folic
acid should be taken with the metho to prevent the side effects, such as
mouth sores, hair loss, etc. When my mouth gets sore, I increase my folic
acid to 2 tabs for a few days and rinse with warm salt water a few times a
day. They usually go away in a day or so.
Angela

Dear Dave and other prospective and new members to the PA list:
To get off to a good start,I suggest to subscribe to the digest version of
the daily mailing list- it has all the e mails in one large long e mail. You
respond to each one or none at all- whatever strikes your fancy. To
subscribe: http://www.egroups.com/ Then put in the word :
PsoriaticArthritis, and you are in!
As a digest member- your mailbox is not swamped with over 30 individual e
mails each day!
Please introduce yourself to all in the group in your first posting to the
list. When you have a chance read the posting guidelines for the list on our
web page as well as any other informative stuff we have got posted there <A
HREF="http://www.wpunj.edu/pa/"
Robert Harris-our creative webmaster)!
<A HREF="http://www.psoriasis.org/"
</A
each year is the best $15 bucks I ever spent-they keep you abreast of
everything and have phenomenal web resources as well.
Good Luck and welcome aboard!
Michelle S,
Founder
Michelle

Hi everyone,
I have been lurking in your group for about three weeks and have learned a
lot from your posts. My name is Jennifer, I am 29 years old with a recent
diagnosis of PA. I have little to no P but have been in excruciating pain
for about 1 year. I saw six or seven doctors before I was finally sent to a
Rheumy in August. She diagnosed me within 10 minutes and confirmed the
diagnosis with a blood test. (Lucky me I have spinal involvement.) After
our first visit she put me on Pred 10 mg, Celebrex 200 mg 2x daily, Elavil 10
mg and she had me begin Physical Therapy 3x a week. The combo is ok and I am
feeling physically and mentally stronger. The fatigue and pain are still
there but a lot more bearable. Within the last two or three weeks I have
been developing more "hot spots" and the nails on my right pinky finger and
left big toe have detached from the nail beds. I have read that this is part
of PA. Does anyone else have detaching nails? If so is there anything that
can be done about it? Is it ok to put nail polish on my fingernails? (The
problem is embarrassing) Is it possible that I need to add more meds? Any
information you have would be greatly appreciated.
Thanks,
Jennifer - in Connecticut

Hi All
lately, i have been suffering from almost continual bouts of mouth sores. they
are usually on the tongue , but sometimes the inside cheek or lip. never
visible, but absolutely agonizing. they throb all night and keep me awake. i
can't eat, can't talk, and when i do talk i have to
slur like a drunk. my boyfriend keeps asking me if i've taken too much pain
medication. does anyone know if this couth be PA related?
thanks, barb

Hi Amy,

Blood work is not the only indicator of PA. If you have x-rays or MRI's to show degeneration or progression of the disease, that is also used to determine disability. A functional capacity exam (FCE) is also helpful. A good rheumy or physiatrist can help you. Consider going to an advocate that helps with SSI claims. Look into their record of success. Some are much better than lawyers because they give you more time. Be prepared to wait at least a year for a decision unless your disability is very obvious.

Allayne

Dear friends,
I thought I might give the hyperlink to our web page since there have been a
lot of questions lately about PA symptoms .<A
HREF="http://arthritis.about.com/gi/dynamic/offsite.htm?site=http://www.wpunj.
edu/pa/"
Michelle
The website was developed by our own Robert Harris for us!

Hi I just got back from the Dr's and found out I have
a bad case of strep throat. It seems like I remember
reading some post regarding PA and Strep. Is there a
correlation or was it one of those OT?
Thanks so much
Judy

Please do not use : "Digest 330" as a subject line- we have no idea what that
will mean!
When responding to anothers query, only copy the minimum amount necessary to
get across what you are answering- not the entire previous post. Thank you.
Michelle
Visit our Mailing List website for Psoriatic Arthritis by going to
http://www.egroups.com/
and sign up expertly for PsoriaticArthritis. We now have over 400 members
globally!

Hi All !

First "Thank s" to all who replied to my mail. My pc has been down for at least 6 months, therefore have been way behind in a lot of matters. From what I am understanding from everyone is the following: You should start off aggressive in regarding meds for PA? That there are alot of other related problems associted with PA? Can some list them? Is there a master list some where? Is this always being tired all the time from PA or depression ? My sister has lost the use of her hands feet and has been in a wheel chair for 10 years now. She is allergic to anti-inflams and resetly developed diebetis. I understand that everyones system is not the same, but you know you can sometime wonder. As far as "the great white north" goes, I am across the border above Maine. Any one close to me?

Happy almost Caniadian Thanksgiving!!!

Marilyn

Hi Diane,gosh you sound just like me and you are my age also,I had so
many test done and finally went to a rheumy and finally dx'ed with
PA,and osteoarthritis and spondylitis,well my grandfather RA.so I
guess ill have that also,I have been on a lot of meds still on them
now,some days are diamonds and some days are gold,as the old sayings
goes,,I am on disability now,I was such a tomboy when i was younger
and I am paying for it now,,,,I really dont know if it gets
anybetter,not sure if anyone knows,,I also have it in my chest,anyway
good luck at least now you know,,,take care
bj

You are VERY lucky the judge told you this on the same day of the hearing...
I wasnt as fortunate with my ****** judge... I had the hearing on may 11th
and still no word from him.... And you dont know how crazy this could make a
person just waiting , and waiting , and waiting...... And after all this
waiting if the decision is no , I'm probably going to go ****** nuts on
him...... This is just totally pathetic that I have to be put through all
this sh**.... ****** up government.... ohhh of course, I'm only 25? so,
he'll just probably think i'm too young for this and disapprove....... The
constant aggravation of having to ask my 63 year old dad for money as he is
still busting his ass working 12 hour days doing construction and i'm just
home suffering with this bullsh**..... (i'll probably feel better after
i'm done with this bottle of wine.....sorry bout the rant)

I am going to be a Grandma in April and not even PA can take the grin off my
face right now!!!!!!!
Shelley, Monroe, MI!!!

I had my first infusion on Tuesday. I was totally intimidated because I had no idea what to expect. Luckily the nurse was very kind and had a good sense of humor.

Because I frequently sting and itch all over anyway, and that is one of the possible side effects, I was very concerned. But, nothing happened, other than being cold the entire time. Since all of the chemo patients automatically picked up blankets and covered up there must be something chilling about having medicine intravenously.

I am interested in the experiences of the few of you who are on Remicade. Any side effects, less pain, more fatigue, etc.?

You can e-mail be directly at jhowing@.... Thanks!

Shelly,

I was a branch manager of a bank. The job was high stress, and because of cut-backs, I had to help in a teller window and work extended hours. I seldom even got a lunch break. I loved my job, however, and was very disappointed when I couldn't go back to it after my knee surgery. My employers were very unsympathetic and did not believe that I couldn't work. If I had a more publicized disabling disease, they might have been more understanding.

Allayne

Hi everyone !

I am a member who does alot of reading. My sister and I also have P and PA. My sister who is 4 years younger than I has been in the hospital since Dec. 10/99 with her PA and other related problems. She is being placed in a nursing home within the month (so they say again). We shall see. I am having trouble with my heels. They tell me it is falling arches. They have given me Celebrex 200mg. a day. I am too afraid to take it, because I have a bleeding problem as it is. And I'm afraid that this is the beginning of the same hell my sister is going through. Please help me through some support or advise. The weather is starting to turn cold here in the great white north.

Thanks

Marilyn

I had my SS disability hearing yesterday. The judge stopped it after 15 minutes and said, "We know this lady is disabled, we just need to determine when to set the date of disability". It seems that both of the doctors that social security sent me to concurred that I was unable to work. Boy, was that a relief! I had been a basket case for the past few weeks worrying about the outcome of the hearing.

I would advise anyone going through this process to hire an advocate. This is a lay person who specializes in helping you through the paperwork and hearings. I hired a lawyer who was too busy to help with anything. If I had known what was in my file(she had access to this if she had taken the time to look at it), I wouldn't have had some very expensive tests to show that I couldn't work.

It will be about two weeks before I am officially notified and I don't know how much back pay I will get. This finding, however, should help with my appeal to my insurance company that denied my long-term disability.

We desperately need more publicity about PA. Most judges and insurance companies have no clue about how disabling this can be.

Allayne

Thanks to everyone that responded to my email
regarding if tylenol pm works. Most everyone said they
dont use it cause of the liver problems but I was
wondering what your thoughts are if I only use it once
or twice a week? I am not on any mega meds like mtx. I
will be in a month and then will probably not try it.
I am afraid to use it after all I read but was
wondering if everyone said dont use it cause they
thought I ment everynight?
Judy in CA

Hi all,
If anyone is looking for a parafin dip machine for hand s and feet, I
found one at Sams Club today. It is made by Remmington and was $49.95.....
That is the lowest price I have seen anywhere.
Nancy in Wisconsin

My P.A came 12 years ago under allot of stress. It has thrown me for a loop
here and there but so far I've kept going. I think it's important to be
aggressive and don't be afraid to try lots of different drugs and don't
miss any doses, whatever your taking. Stay away from alcohol it only makes
it worse for me. My Doc. says the best indication of what the next ten
years will be like is what the last ten years were like. I don't know if
it's true or not but it sounds good to me. I started methotrexate and it
took a couple months to kick in but after that I felt like an 18 year old
again, I'm 37. Unfortunately I had to go off it for awhile and it only
takes a couple weeks to "kick out".

Well, David and those others that expressed concern about the 3 shots a week
no longer need to fear.
When my rheumy first placed me on the 3x a week regimen in July, he said
Immunex said it was indicated for those with increasing resistance to the
drug to inject a third time. I gave it a chance for 3 months, taking them
with my 17.5 mgs of mtx to no avail....I saw my rheumy today and it was clear
that I have been deteriorating for some time now. He removed me from both
meds and has started me on Arava, which I will try for 6 weeks, and if there
is no marked improvement by that time we will add Remicade to the mix.
I guess we'll see what happens....
Kim

In a message dated 9/22/00 2:39:59 AM Pacific Daylight Time,
PsoriaticArthritis@egroups.com writes:
Hi everyone,
I tried Enbrel shots- for six weeks, and unfortunately, it did not work for
me, and I had a side effect of carbohydrate craving and gained some
undesirable pounds. I have heard miracle stories from people with RA on
Enbrel.
I understand that it costs over $1100. per month for the twice a week shots!
It is a biologic- not a chemical- so it needs to be kept cold and is mixed by
the patient just before injecting! You mix powder with some special water
and then draw up the shot yourself and inject! It is a little tricky the
first time, but then you get the hang of it. They even have a patient
education booklet and video for those who need extra help.
Arava is another methotrexate style drug. It is an anti- metabolite, so it
slows down cell regeneration throughout the body. Side effects are those
similar to methotrexate- like anemia, etc... The good news is , that it is a
small white pill and you take it once or twice a day and that is it- no
shots!! It worked really well for me- skin- joints, etc... for quite a
while. Only in the past four months has it stopped working to a great
extent. Personally, now I am on Imuran- 200 mg a day, and the Arava 20 mg a
day- along with trying the Remicade IV!! Still no results- but I have another
Remicade infusion on Monday and another eight weeks later before we have to
give up on the infusions. They are $2300 a pop for " outpatient IV drugs" or
so my insurance company calls it.Thank G-d it is approved as an inpatient
procedure- so I do not have to pay 20% as if it were a regular prescription!!
I hope this info helps,
All my best,
Michelle

Okay - 53 and counting here in rainy south Georgia.
Helen

I actually called that number now... That lady pat there was nice....They
said the remicade study is over with but they are now doing the Enbrel
study... I'm still thinking about if I should jump on that or not.... I live
10 minutes away from that place in new brunswick...... Anybody else live
close by? It would be such a relief to talk or see someone else who has
this same crappy disease....

35 -- Patty, moderator from Ohio, PHDRWD@...

Anecdotally, I have heard from others over the years that a lot of
nonsteroidal antiinflammatories work well for them- such as Voltaren,
Relafen, Advil, etc...The newer Cox-2 inhibitors - the strongest one there is
Vioxx, so you check into that one too. This is the most complete list I have
for those who have severe pain during working hours and need to have a sharp
mind!!
good Luck,
Michelle
Visit my 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!

I was curious as to what dosage of metho everyone was taking? And at what
dosage you have to go to injections. It seems that my rhuemy has to increase
my dosage about every six moths as the effectiveness starts to wear off. Any
input would be helpful.
Shelly
in St. Louis, MO

Hello group--
I was wondering if anyone else on the list besides me had been instructed by
their rheumy to inject Enbrel 3 times a week, and if so, have you noticed an
improvement? (This is up from the standard 2 shots which I had been on since
April 1999.) I have been doing 3 shots a week for 3 months now, and I think
I have deteriorated even further since then. Just my two cents. Thanks for
any thoughts/input on this.
Moderator: I inject just twice a week. At the moment I'm on a round of
antibiotic so skipped my Tuesday shot. PatB
Kim

--- In PsoriaticArthritis@egroups.com, "Linda Colón"
<lindale@a...
<< I'm beginning to think that maybe this is a male/female thing. Or
a Venus/Mars thing.
Thanks for somebody finally pointing this out. Anyone that can't see
the others point of view should read John Grays book. Although that
still doesn't rule out the fact that you can still be an inconsiderate
boob or an over-reacting victim.

Hi Group,
Question: Has anyone here ever had a positive bone scan,(showing activity in
the bone) that turned out to only be PA in the spine etc?
I just found out that my mother had a positive bone scan which notes activity
in her shoulder,hip,rib, and 3 vertebra on her spine. (She had breast cancer
13 years ago and had a mastectomy and no chemo or radiation because the lymph
nodes were all clean.)
The radiologist said "The findings are compatible with metastatic disease".
Everyone automatically is thinking it's the cancer again but isn't PA
considered a 'metastatic disease'? (it spreads throughout the body from
joint to joint).
Now she's running to an Oncologiost and is afraid the cancer came back and
spread. I firmly believe that all her symptoms are from PA. She had a bad
flare of psoriasis last summer and since then has had a worsening of her
arthritis symptoms.
Since my own diagnosis of PA last year, I have been following her progression
and I'm convinced she should see a Rheumy. She even complains of chest pain
which I believe is Chostocondritis from the PA (thanks to a previous posting
on this site dated 8/27/00).
I would really appreciate any feedback from anyone who had the same
experience. She's seeing an Oncologist on Wednesday and I'd love to be able
to give her some more hope that it's probably just PA.
Thanks!
Rikvy :-)

<<<<<<<<<. One question I have, though, is HOW can
anyone coniser ANYTHING that happens in your life since PA "took it
over" OT?????---
Shelley,
You put my thoughts into words exactly. Of course, my family supports
me but do they understand? NO.
Is Gillian's attempt to get a job in spite of her PA OT? NO.
I'm beginning to think that maybe this is a male/female thing. Or a
Venus/Mars thing. It seems to be almost exclusively the men who want
only medical info. When a particularly hostile man (I think) told
Gillian to "get a life" I could have cried. This IS our life now.
Linda in Illinois

CYBERBULBS
Submitted by iVillagers everywhere
Q: How many people does it take to change a light bulb in cyberspace?
A: 1 to successfully change the light bulb and to post to the mail
list that the light bulb has been changed.
14 to share similar experiences of changing light bulbs and how the
light bulb could have been changed differently.
7 to caution about the dangers of changing light bulbs.
27 to point out spelling/grammar errors in posts about changing light
bulbs.
53 to flame the spell checkers.
156 to write to the list administrator complaining about the light
bulb discussion and its inappropriateness to this mail list.
41 to correct spelling in the spelling/grammar flames.
109 to post that this list is not about light bulbs and to please
take
this email exchange to alt.lite.bulb.
203 to demand that cross posting to alt.grammar, alt.spelling and
alt.punctuation about changing light bulbs be stopped.
111 to defend the posting to this list, saying that, "We are all
using
light bulbs and therefore the posts **are** relevant to this mail
list."
306 to debate which method of changing light bulbs is superior, where
to buy the best light bulbs, what brands of light bulb work best for
this technique, and what brands are faulty.
27 to post URLs where one can see examples of different light bulbs.
14 to post that the URLs were posted incorrectly and to post
corrected
URLs.
3 to post about links they found from the URLs that are relevant
to this list, which makes light bulbs relevant to this list.
33 to collate all posts to date, then quote them including all
headers
and footers, and then add "Me Too."
12 to post to the list that they are unsubscribing because they cannot
handle the light bulb controversy.
19 to quote the "Me Too's" to say, "Me Three."
4 to suggest that posters request the light bulb FAQ.
1 to propose new alt.change.lite.bulb newsgroup.
47 to say that this is just what this list was meant for, leave it
here.
143 votes for a new list: alt.lite.bulb.
38 votes proclaiming the advantages in using vintage light bulbs.
I hope you all got a good laugh from this :-)

Hi all!
Mark had two doc visits in the last few days. First, something new.
He saw a new dermatologist who says the creams, lotions, etc are
good, but are so hard to comply with consistently! No kidding!
Anyway, he said there is a new development, a pill called Actos
(sp?). It was developed for diabetes, but the patients with both
diseases discovered their psoriasis clearing up. The derm said he
has had about a 50% success rate with it. Mark will need to do more
frequent liver checks...but if it helps clear up the P it will be
worth it. Anyone tried it yet?
Yesterday we saw the rheumy. He is stumped by Mark's muscle weakness
and the fact that the biopsy was botched. He thinks being back on
the MTX has improved him enough that another biopsy isn't called for
now. He does still see weakness though, and is refering us to a
neurologist to check out "more obscure muscle diseases". I don't
know whether to be relieved or not. At least it's not a definite
fatal diagnosis like I was dreading!
OH, for anyone interested, the pennies came out naturally! YEAH!
Laurie

Good Morning Everyone,
I am happy to have found your group and look forward to discussing
this type of arthritis with others.
I have read some messages already and was pleased to learn that I am
not the only person whose medications seem to work for 3-6 months and
then become ineffective.
I also learned many people have a difficult time with diagnosis. I
was beginning to think that was only me too.
Sleepless nights and mild depression have also become a large part of
my life. It's a vicious cycle--can't sleep because of pain and
become depressed because I can't sleep.
Anyway--I'm glad to have found you and will try hard to become a
contributing member.
Thanks for being here,
Jeanne

Hi All,

I've been a lurker on the list for a month or so. I will be on MTX from mid-October, and am currently on prednisone and Celebrex. I have obtained a lot of good anecdotal information from this group, which is why I subscribed.

I'm going to throw my two-bob's worth into the current discussion on OT and people leaving the list. I have been on a number of lists over the last few years, and EVERY one of them has had to deal with this problem.

If I am lucky, I can get on line for about half an hour a day as, like most of you, I work, and I am simply too tired at the end of the day to logon. In the short time I have, I do a number of things, including downloading emails of course. I don't get the digest version, as I prefer to quickly scan the body of each message.

A few weeks ago, on one particular day, more than 50% of the emails were, by definition, OT. Understandably, many people discuss matters that many other people are not interested in. It is not a lack of respect, nor indifference, when those messages are considered OT. I saw an interesting comment today from one member (please, I mean no offence here) who said that they don't discuss their PA with family and friends, and Mum thinks they just have a bad back. I imagine that a chat about anything would be pleasant when nobody other than those on the list understand PA.

Try what I have done. Tell your boss (and staff, and workmates) about your PA until they understand the pain you are in. Don't bore them, inform them. You are not moaning, you are telling them of a serious medical problem that adversely affects your life, and therefore, your work. Sue them if they sack you! Pass on what you have learned about PA and the drugs you are on to your family. They should understand the seriousness of PA if you give them enough info. I am sorry to say that I would be crushed if my Mum reduced my PA to a "bad back". Forget being proud and strong all by yourself, tell people. Don't let them patronise you. Relying on this list indicates a need, try fulfilling some of that need from some of the people who should be providing support a bit closer to home. I have a huge amount of support from family and friends. Perhaps I am lucky, or perhaps I made them treat PA seriously.

I have also noted the comment about many people not knowing how to email each other without emailing the group. I urge those people to learn how. Your browser will have a Help menu. You all found this group, so you are all somewhat computer literate.
When I joined this list, Gillian was the first to send me (offlist) a welcoming email. I appreciated that. However, if you are lurking out there Gillian, don't be so touchy. Different opinions are important. I'm sure, having read the "offending" email, that no offence was meant. However, I have two dogs, two cats and a rabbit, but apart from that mention, you won't hear about them on this list!

That's mine for what it's worth. This list has already given me a mountain of valuable info about the drugs I have to take, and what I can expect from MTX. If it cost money to join this list, I would already have my money's worth. That's why I subscribed.

Regards,
David Note from Michelle: Three cheers for your suggestions David!!! Thank you!!

Hey ya, I just found out I have this here Psoriatic Arthritis 6
weeks ago, I just thought it was the old arthritis by the way I hear
people talk about it. Boy was I was wrong, I've had it for about a
year and a half, I was to stubborn to go see the Doc. I've lost some
movement in my wrist, elbow and knee, all on the same side. The
Rheumatologist has but me on Methotrexate and Leucovotin. It seems to
be helping my psoriasis some,( which has terrible,AND,which dont do
much fur yur social life). I know the medication is to help slow its
progress, But is there anything that can stop the pain from the
normal day stuff you have to deal with. I'm trying to build a house
and it just kills me just to use a hammer. Sorry to be babbling ya,
its just that this stuff have put a BIG damper on my life style, just
like the rest of ya. By the way has anyone heard of Remicade, its
used on people who have Rheumatoid Arthritis. Dont know of the side-
effects. Thanks for your ear and any imput on what I've got to look
foward to with this stuff, Tommy

Dearest Group,
I want to remind all that the posting guidelines have remained unchanged
since the start. "OT" or off-topic items should be marked as such in the
subject line of your post, and PLEASE limit such postings to three per
day/per member.
I apologize if, in the last few months, I have been sleeping on the job and
did not wake up to see that the guidelines were not being followed.
Apparently, there were some people who went a little overboard. It is a
shame that this could not have been brought to my attention or to the
attention of the other moderators privately, so that we could have reminded
those overposting "OT"s , so they could have gotten back to the three a day
guideline, without suffering a personal attack from another member.
If anyone is to blame for the current mess, it would have to be me, since I
did not stop the overposting when it started. I certainly would never throw
someone out of the group for it! In the past I have had to remind some of the
members to keep it in line- and had no difficulty whatever with cooperation.
I must stress that, to me,this group is more than a mailing list of those who
have PsoriaticArthritis-- -- --I feel it is also a fellowship, and as such, I
feel that occassional off topic posting is an excellent way for us to get to
know one another better and to support each other emotionally and
spiritually .
I humbly ask that all those who left in a "huff" consider coming back to the
list. I will try to keep a better eye at the postings. I am going to have
to ask for some more volunteer moderators soon too.
I also ask AGAIN. PLease do not continue to discuss this topic on the list.
Consider this topic CLOSED. I am asking all moderators to delete any further
messages along this line of discussion that get posted to the list. If you
feel you still need to vent your opinion on this topic, please e mail me, the
list founder/owner directly or e mail privately between yourselves.
Thank you in advance for your cooperation,
Michelle
Visit our Mailing List website for Psoriatic Arthritis by going to
http://www.egroups.com/
and sign up expertly for PsoriaticArthritis. We now have over 400 members
globally!

In a message dated 9/17/00 7:55:13 AM Pacific Daylight Time,
PsoriaticArthritis@egroups.com writes:
<<
Dear friends,
I too have had trouble with falling asleep while driving for the past several
years. I am going to have another sleep study in the next few months- they
are trying to see if I get a type of narcolepsy. It is very strange and very
dangerous. I have had to hire someone to drive me into NYC for my doctors
appointment once a month! It is expensive- but worth every penny that I get
back alive. I have actually stopped every 15 minutes during a trip to Maine
and found myself falling asleep instantly in the car seat inthe parking lot
of the roadside restaurant/gas places. My kids have learned to be quiet and
wake me up after 30 minutes.
I have been given Ritalin to take when I know I have to drive and stay awake.
I can tell you that it really works well for me. I only take it when I am
going ot have to drive that day- on the highway or out of town. I recommend
it highly to anyone who has my problem. I was told by the doctor that it is
not addictive like the other stimulants that they used to give people to stay
awake- the equivalent of speed I think they used to give a prescription for.
Anyhow, the Ritalin works well for me.
Michelle

The website that was quoted was set up by none other than Robert Harris, our
groups webmaster!! We all contributed information to share on the site and
Robert has done a beautiful job making it look wonderful on the new web page.
I want to remind all new members to send their PA-bio to Robert at
RAHatrris@...
and Robert will post it to our site, so that you can share your complete
story with those who look to our site for help. There are other pages that
are still in the development phase, so if you can contribute in anyway with
material for them, please let us know!
I suggest that we all get going on getting the website more helpful and
somehow advertise it more so we can help more people. Maybe this change of
topic to a more constructive issue is just what we need right now!
Michelle
Visit our Mailing List website for Psoriatic Arthritis by going to
http://www.egroups.com/
and sign up expertly for PsoriaticArthritis. We now have over 400 members
globally!

Count me in on the second group idea...I have been a member for a long
time. I like all of the lists contents. I do not share my pa with my
family or friends...that is why I turn to you guys. As far as my
fam/friends are concerned...I simply have arthritis - or how my mom
phrases it "she has a bad back"...lol. Anyway, count me in!!
Jayne

I've been on MTX for 6 1/2 years. Just increased to 20mgs a week. I seem to go through periods of loosing my hair. One time it got pretty scary, but then it came back. Several of my meds could cause it. But, I never really know why it falls out. I just always pray that it comes back. Becky

Having been on this list a year or so, a constant lurker and
sometimes-poster, I thought I should offer my two cents as well. When I
first joined this list last year I was happy with the balance of "hard
core" disease information to "off-topic" discussions or, shall we call it
"moral support"... in the past 3-4 months that balance seems to have
tilted heavily toward the moral support and, while that is certainly useful
to many, it is not what brought me to this list originally.
I think there are probably at least two main types of subscribers on this
list. Those who come more for the "community" feeling and moral support,
and those who come more for the "dry" medical information exchange of
stories of doctors, meds, dosing, technique, and what have you. Some want
both, of course and don't mind the mix no matter what it is. I probably
lean toward the "dry" side, mostly because I get enough "moral support"
elsewhere.
Like many others on the list, I am interested in knowing others with this
disease and what treatments/meds work for them, their experiences with
them, and what reactions might be (as well as occasional stories about
stupid doctors where we can help straighten them out!).. Since I get the
messages in digest form, the last few months I have literally had to
perform a "find" for keywords like "enbrel" to find messages of interest to
me. Perhaps I should simply stop getting the email and just search the web
site on a periodic basis? I'd be willing to do that if that's where this
list is headed, but given the large support for OT discussion, I think it
would be a good idea to start a second group aimed at more informal
discussion and moral support, like PAChatters...I think this is commonly
done with other disease support groups, and works pretty well.
IMHO
MikeD

I have a terrible time staying awake in cars. I've been this way for
the past 30-40 years. I doze off in the middle of sentences.
Unfortunately, I can't read in the car (headaches) so I don't know if
that would help keep me awake or not.
Diane
Toasty in Texas

<snip
it is just plain sad that "off-topic" has become such a divisive
issue. </snip
I think the point's being missed here. There are lots of ways to
communicate with one another that don't involve posting to a list of 400
members. Someone last week brought up the idea of chatting via AOL's
instant messenger - a great idea! Also, what's the problem with e-mailing
one another individually?
The point of joining a list on a specific topic is to get detailed
inrfomation on that topic. I, for one, do not find the on-topic emails dry
and boring, and in fact, find them extrtemely helpful, especially those
that involve emotional aspects of the disease. From this list, I've gotten
questions answered about details I could have never found online at any
medical site - such as the fact that many with PA suffer from chest pain.
When I mentioned that to my rheumy, he looked at me like I was a
hypocondriac. But now, I know I'm not because of the stories and
experiences posted by those in this group.
The issue a lot of us have, I think, is that the list was dominated by
conversations between a few people for months - and the topics were
extremely off topic, and not labeled as such. I know a lot of people miss
Gillian's humor, but scrolling through 5 to 10 messages PER LIST became
irritating to me, personally. I've found the last several digests to be
EXCELLENT!!!! I'm not picking on Gillian here - I woudn't mind if she
decided to rejoin, and frankly, don't understand why she was hurt to the
point of quitting based on one message, when obviously, so many people on
the list enjoy her messages. But in my humble opinion, things were getting
out of control, and I'm glad the issue was brought up.
Kindest regards,
Kristin Boice

Thank you to all who replied to my sulfasalazine questions. I've taken the plunge- 1 g a day for a couple of weeks then titrating up to 2 or more g's. I hope it works enough so I can ditch my daily Celebrex. I've used Oruvail, Vioxx and now Celebrex and they all make me feel like I'm looking at the world from inside a fish tank! I feel groggy and dulled. Does anyone else get that effect from them? Celebrex does it the least to me which is why I'm on it now. Do the other PA drugs hit the brain this way too? Do Methotrexate or Enbrel do this? Am I doomed to be dulled?

Martin

I would second the idea of another group if that is what is
needed to get back with Gillian. I posted a reply last Sunday that
for some reason never got to the board basically saying what several
more have said since: we are not just about medical advice here and
it is just plain sad that "off-topic" has become such a divisive
issue. (Ironically, I also said that anyone who wants to can post
but I was maybe wrong on that point) You would think that with all
the pain and suffering most of us put up with on a regular basis,
this particular issue would not be such a stickler and certainly not
worth hurting people over. After having this disease for the past 19
years withOUT the benefit of this list I would definitely rather stay
with it, but not if we all have to be so concerned about labeling
something OT or be asked to leave.
Joan

Hi everyone! I found a site that lists the symptoms of PA.The address
is: http://www.wpunj.edu/icip/pa/symptoms.htm A lot of the
problems that we have are mentioned there.I hope this is helpful to
someone. God bless you all! Diane C.

My Husband has Psoriatic Arthritis and is taking methrotrexate which
has been very effective in treatment. We have been told he would
have to go off the medicine to try and get pregnant because of birth
defects..He has been off it for 3 weeks and already has significant
pain and problems...does anyone have suggestions..we're not sure if
we can make it the 3 months..and we both are in our late 30's and are
not sure how long we can wait.
Moderator note: I too am going to attempt a pregnancy. I weaned off MTX,
injecting 0.2ml/wk less each week until I was off completely. I had more
discomfort while I was weaning off MTX than I have had since I've been off.
Perhaps your husband's discomfort will ease as well. This disease can be sooo
variable.
I have also found that swimming and water aerobics classes have played a major
part in easing much of my discomfort.
My RD told me if I could fall back on prednisone if at any point before or
during my pregnancy we decided that I needed it. I don't know if there is a
prohibition against men using prednisone while attempting to conceive; perhaps
this is an option to explore with his doctor.
Hope this helps, and best of luck to both of you! Patty (PHDRWD@...,
moderator)

needed 50 mg by
flare. <<<<<<<<<
Michelle,
What kind of side effects do you have with a dosage that large? I'm
terrified of losing my hair. It's aleady so thin on top without any
medication.
Linda in Illinois

Hello Chris,
Maybe this is far fetched; but could it be the
(soothing) sounds and movements of a moving vehicle
that causes your droopyness?
I have trouble sleeping as a rule but once I am
sitting on the settee in my casita and put my legs up
I fall asleep in minutes. I only have that in THAT
settee and when I go to bed I am wide awake again.
Just MHO FWIW.
Greetings.
Margaretha.

Tu correo gratis en MixMail http://www.mixmail.com
Inicia tu navegacion en http://www.ya.com

Where did the info come from that says NSAIDS stop disease progression? Cortizone doesn't even stop the disease. This is contradictory to everything I've been told by medical professionals, read in my research and experienced? What is ARC?

Thanks.

OK, got another one for you all. I am having increasing problems with
driving. I can't stay awake. It's only 7 miles to work and I fight to stay
awake the whole time. Before I leave I am alert and awake. Once there, I
am fine, too. But the drive is getting harrowing. Today I had to drive to
Salem, about 45 miles from here, and I ended up having to pull over in a
rest stop, and as soon as I stopped the car I was awake and fine. This is
after plenty of sleep last night. This is not new, just getting much much
worse. I am useless as a passenger. I cannot stay awake in the passenger
seat at all. If I have to take the bus I wind up at the end of the line,
miles from my destination, groggy and disoriented. My doctor just stares at
me and shakes his head. Anybody with similar problems? I feel like I'm
in a fog within a few minutes of being in the car, any car, any moving
vehicle. It's not carbond monoxide, I had it checked. It's not meds. My
only tx for PA is EPO, no pain pills since adding glucosamine and essential
fatty acids to the EPO.

I've read that the fastest growing segment of the computer market is
the over 55 group. They want e-mail and the Net.
My husband teaches a class for new computer users in the Rio Grande
Valley in Texas (retirement country) to a 55+ community. They range
in age from 55-92! Out of 400 sites, there are probably 75 new
computers this year! Some are great - some need a LOT of help. And
this is just one small group in one area of Texas in the U.S.
Some of these students are doing much better than the younger students
(30-45) he taught earlier. These "older" students are ones with the
time and tenacity to log on and sound off. You don't get old and
mellow - you get old and vocal.
Diane
Toasty in Texas

Hi I am new to ya'lls group. I just want to introduce myself and ask if
anyone else has been using Remicade to treat their PA. My Rheum. suggested
this treatment as I have not been responding to Methotrexate alone. The drug
was originally designed to treat Rheumatoid Arth. but her experience has been
that this drug has been extremely effective in her PA patients. It is
administered via IV Therapy. I had my first dose this past Tuesday. I go
again in a week and a half for my second treatment. Is admin. at 0, 2, 4, 6,
then every 8 weeks after that.
Anyway, any experience with this would be much appreciated. I am a 30 year
old wife of a police officer and mom of 2.5 year old little boy(no stress
there....lol). I was diagnosed just a year ago, after people telling me that
it was all "in my head". BUT being the persistant person I am, I went from
doc, to pod. to rheum. and back through the list, looking for answers. I had
been having severe pain in lft foot, and swelling in knee and all joints on
my left side. Looking at my xrays, my rheum and orthopod, have both said
that I am, joint wise, much older than my 30 years. The Rheum. is being
super agressive so that I will not lose anymore time caring for my son and
being a wife, the way I had prior to the PA. I had never had a skin outbreak
EVER in my life, until after my son was born, and I got a small patch behind
my ear and it just slowly spread.
Well ya'll take care, and thanks for "listening" to this. If anyone has had
any experience with Remicade please let me know.
Valarie near San Antonio, TX

Does anyone ever have muscle spasams? I have been getting these more
and more and they seem to come on at night. First it happened in my
back and legs and feels just like an electrical shock. My body just
tenses up for about 10 seconds then releases. But the last one I had
scared me it happened in bed again but affected my stomach and right
arm and hand. Even after I got out of bed and had some milk it was
still occuring as I was sitting in my chair. I tried to keep my arm
on my knees but it kept flying into the air and tensed!!!. I have yet
to see my GP but was interested to know if anyone else has had these?
P.S. Gillian please come back, I miss all your little stories and
humour!

I took methotrexate for quite a few years and eventually needed 50 mg by
injection once a week in order to keep me out of a flare. For those of you
stepping up by 2.5 mg pills each week- I know it is hard when you are in such
pain to wait- but there is hope!! keep the faith,
Michelle

Hi Patty Bacon, I was reading the e-mails and saw something in one of yours that I don't know what it means. Can you please tell me what "IMHO" stands for? I'm just curious. I saw it one other time but I don't know if it was from you or someone else. Thanks, Cassie

Hello all,
Just got a warning about a new virus. When you read:
"Your friend is the scoutshacker"
don't open it. It wipes your hard disk. Info. from
McAfee.
Greetings.
Margaretha.
Tu correo gratis en MixMail http://www.mixmail.com
Inicia tu navegacion en http://www.ya.com

I know how you feel,Shelley!I thought I had a brain tumor or
something!I get my kids names mixed up with my grandkids names.I
can't remember who I've sent email to.It's terrible!I bought new
belts for my vaccuum and put them in a special place so I would
remember them.Well,I tried for 2 weeks to remember but I never did!I
asked my husband to close the windows so I could turn on the air
conditioner.I checked on my garden,came in and saw that the windows
were closed.I thanked my husband for doing it and he told me that I
shut them before going outside!I always had a great memory until the
PA stared getting bad.I've read that memory loss is a symptom of
PA.Sorry,I can't remember where I read it!LOL!God bless
you! Diane C.

I've added a new poll. For those of you on Enbrel please vote on
whether you think the Enbrel has helped your psoriasis. This is just
your opinion on your psoriasis and NOT the arthritis.
Thanks,
PatB

"13) WOULD YOU SAY THAT NON-STEROIDAL
ANTI-INFLAMMATORY DRUGS STOP THE DISEASE PROGRESSION?
-yes, 3 votes, 4.84%
-no, 49 votes, 79.03%
-Do Not Know, 10 votes, 16.13%
All the "yes" VOTERS ARE CORRECT. Non-steroidal
anti-inflammatory drugs DO STOP the disease
progression. One could argue that they only work if
they are suitable for the individual concerned, which
is why it is important to try them all. I borrowed
this question from the ARC Booklet for PA!"
At the risk of starting another on-line battle, I believe that following
survey results with comments and statements of this nature are
counter-productive. The "NO" voters are not wrong, this is their
experience and it is quite valid, especially when the discrepancy is so
large. If this was a quiz with right and wrong answers, comments on the
responses would be appropriate. Although the survey was not scientific,
the fact that the sufferers of this disease find, clinically, that their
symptomatology does not match the current medical beliefs might also mean
that the common medical beliefs are, in fact, WRONG. We all have had
situations where our doctors have had difficulty understanding our
symptoms and yet we are surprised when our responses do not match the
current medical literature.
I happen to be in favor of surveys of this nature because they validate
the symptoms that we all experience. Let's not belittle our own symptoms
just because they do not match the currently accepted thoughts. With
Columbus Day almost upon us, let's remember the world was once thought to
be flat.
Barry

Enter your vote today! Check out the new poll for the PsoriaticArthritis
group:
Has Enbrel improved your psoriasis?
o my psoriasis is better since starting Enbrel
o my psorasis is worse since starting Enbrel
o I see no change in my psoriasis since starting Enbrel
To vote, please visit the following web page:
http://www.egroups.com/polls/PsoriaticArthritis
Note: Please do not reply to this message. Poll votes are
not collected via email. To vote, you must go to the eGroups
web site listed above.
Thanks!

4) ON TOP OF YOUR PA, DO YOU HAVE ANY OF THE
FOLLOWING?
-High Cholesterol, 20 votes, 23.26%
-Diabetes, 5 votes, 5.81%
-Thyroid problem, 15 votes, 17.44%
-depression, 28 votes, 32.56%
-Fibromyalgia, 18 votes, 20.93%
Top Depression: this is too be expected, due to the
nature of the condition.Being diagnosed with any
condition is itself a shock. Being diagnosed with
'arthritis' at a young age, is unacceptable. After all
our Grandparents probably had this conition and we are
not their age. PA also comes with 'drastic' lifestyle
changes, overlooked by the medical fraternity. To them
is it just a disease, to the patient it is their life.
However it is important to try and keep a positive
attitude, even though it is hard at times. Negative
attitudes compound the depression, pain intensifies
the epression and not being able to keep up physical
hobbies, exacerbates the depression. the same can be
said for the PA. High cholesterol seems to be part
and parcel of PA. As to if it is part of the disease
mechanism, or side effects of the drugs administered,
I do now know. Fibromyalgia: This can be a condition
by itself and overlapping in other conditions. Recent
studies indicate that a good Aerobic work out improves
Fibromyalgia. However how one can join any aerobic
class with swollen joist I do not know. Thyroid and
Diabetes also seem to be connected to PA. As to if
this is part of the condition, or perhaps drug
induced, I do not know. However I think all PA suffers
should be aware of these two extra problems and keep
them firmly in mind.

14) DO YOU TAKE REGULAR EXERCISE?
-Muscle strengthening, 8 votes, 17.39%
-Swimming, 9 votes, 19.57%
-Walking, 22 votes, 47.83%
-Running, 0 votes, 0.00%
-Shopping Trips, 7 votes, 15.22%
It is recommended again by ARC, that the most suitable
ways for someone with PA to take regular exercise is
Muscle Strengthening and Swimming.

9) WHICH ONE WOULD BEST DESCRIBE YOUR PERSONALITY:
-Reformer, 1 vote, 1.69%
-Helper, 8 votes, 13.56%
-Perfectionist, 8 votes, 13.56%
-Motivator, 3 votes, 5.08%
-Competitive, 5 votes, 8.47%
-Romantic, 0 votes,0.00%
-Anxious, 3 votes, 5.08%
-Thinker, 11 votes, 18.64%
-Worrier, 7 votes, 11.86%
-sceptic, 0 votes, 0.00%
-Enthusiast, 1 vote, 1. 69%
-Sensitive, 5 votes, 8.47%
-Leader, 2 votes, 3.39%
-Peacemaker, 5 votes, 8.47%
This is a PLACEBO question!
I felt I should throw a few in, just to keep the Poll balanced.

13) WHOULD YOU SAY THAT NON-STEROIDAL
ANTI-INFLAMMATORY DRUGS STOP THE DISEASE PROGRESSION?
-yes, 3 votes, 4.84%
-no, 49 votes, 79.03%
-Do Not Know, 10 votes, 16.13%
All the "yes" VOTERS ARE CORRECT. Non-steroidal
anti-inflammatory drugs DO STOP the disease
progression. One could argue that they only work if
they are s uitable for the individual concerned, which
is why it is important to try them all. I borrowed
this question from the ARC Booklet for PA!

11) AGE OF ONSET OF PSORIASIS:
-Below 20, 23 votes, 35.38%
-20-30, 18 votes, 27.69%
-30-40, 13 votes, 20.00%
-40-50, 7 votes, 10.77%
-50-60, 4 votes, 6.15%
-60+, 0 votes, 0.00%
12)AGE OF ONSET FOR ARTHRITIS:
-Below 20, 5 votes, 7.46%
-20-30, 18 votes, 27.69%
-30-40, 23 votes, 34.33%
-40-50, 12 votes, 17.91%
-50-60,5 votes, 7.46%
-60+, 0 votes, 0.00%
This reflects other studies on PA. Namely that the
Psoriasis arrives first, followed some years later by
the arthritis. The good news for SOME was revealed in
a study undertaken by Doctors in Israel:
"Patients with onset of skin and joint diseases within
the "same year" had significantly more frequent
synchronous flares of skin and oint. Whereas, Patients
who had histories of 'separates' onset of skin and
joint disease did not have such associations."

15)PLEASE CHOOSE ONE FROM THE LIST BELOW, THAT BEST
DESCRIBES PA IN YOUR OPINION:
-Same as Rheumatoid Arthritis, 5 votes, 8.20%
-Chronic Relapsing Condition, 42 votes, 68.85%
-Mild Condition,0 votes, 0.00%
-Severe Condition, 14 votes, 22.95%
PA is not like RA, except if you test positive for the
Rheumatoid Factor. It is classed as a Chronic
Relapsing Condition.

10)DO YOU CONSIDER YOURSELF OVERWEIGHT?
-Overweight, 45 votes, 71.43%
-Underweight, 1 vote, 1.59%
-Correct bodyweight for height, 17 votes, 26.98%
I always find this a Catch 22 question. Doctor "you
have to loose weight"
Patient, "How?" Doctor, "Well go on a diet, swim, run,
just exercise!" Patient adjusting the wheelchair,
"How?"
Add to the scenario, that some drugs prescribed for
the treatment of arthritis, will increase your body
weight all on their own! AND now we have the cycle. We
take the drugs in order to reduce the pain and
inflammation. we then become overweight, because of
the drugs. Then we go o ut and exercise, but because
we are overweight, we sustain further damage to the
joint.We then go back to takin the drugs and it
repeats.

What PA meeting?? I have asked before who and where the experts are,
but no one has said. Where is the clinic of choice in the world,
everybody? Is there one or a group of experts somewhere doing
special research?
Laurie

OK, in all the crazys lately, my three year old comes to me and says
"Mommy, I need some toast, I'm sick". So I said, "what's wrong?" He
says, "I swallowed two brown monies and my tummy hurts!"
Off to the hospital, and sure enough, there is a coin in his belly!
Tomorrow we go for another x-ray to see if it has passed, if not, a
trip to the surgeon!!!!(not a bad procedure - a scope, I think)
At least I know this one will keep me chuckling for a while! I'm
going to get a copy of that x-ray for his baby book!!!
Laurie

Hi Pat B,
Where in Alabama are you from? I'm from North Mississippi. It would be great
to find some of the group in my area.
Allayne
Down on the Alabama/Georgia line an hour south of Columbus, Ga and Ft. Benning:)

Hi Lisa, I've been taking vioxx since June.I started out taking
25mg but the Dr. raised it to 50mg in July.I've tried
voltaren,feldene,celebrex and trilisate.So far,vioxx has helped more
than any of them and it didn't hurt my stomach.I hope it works as
well for you.God bless you. Diane C.