For those who have Psoriatic Arthritis

I am new to this group and would like to introduce myself and tell you about
my experiences with PA. I have suffered from psoriasis for 34 years which
started 2 weeks after arriving in Australia (where I still live) from
England. My psoriasis has always been severe but it was 14 years before I
got PA. In 1970 I worked for a doctor as a receptionist and he asked me
whether I would mind him having a go at treating my psoriasis (I had been to
many specialists but they all said there was nothing else they could do for
me). I was more than happy to get free medical treatment so told him to go
ahead. I again went through all the creams and ointments at the chemist but
again none worked and he suggested I try methotrexate. I was on
methotrexate for 8 years starting in 1973 and after my 9th liver biopsy
(they did them every year in those days) it was found my liver cells had
started to change so I was taken off of it. Approximately 3 months later I
went to bed feeling fine although very spotty (psoriasis) and woke up the
next morning riddled with arthritis. I went to my doctor and all he said
was that you have arthritis and gave me a prescription for some pills.
Within a couple of weeks I could hardly walk and had pain in both hands (all
fingers affected) both wrists, elbows, knees, ankles and feet. I went for
my 3 month check-up at the hospital I was going to at that time for my
psoriasis and the next day I was in hospital - after many tests it was
suggested I go on Gold Injections although they were worried because one of
the side effects is a skin rash. They sent me home with letters for my
local doctor about administering these and also special equipment to turn
taps on, peel potatoes, squeeze tubs etc. etc. (I was unable to do these
things) and for the next 15 years had gold injections starting weekly and
then going to fortnightly and then monthly and as long as I was careful what
I did it kept my PA under pretty good control and luckily I could tolerate
them and had no side effects. For those 15 years I tried many things to
control my psoriasis which just kept getting worse and worse and as a last
resort was put on cyclosporine 3 years ago. This drug also helps my PA so
after 3 months of both gold injections and cyclosporine went off of gold
injections and my PA is still being controlled reasonably well and overall I
do not suffer too much. I was originally told I would only be on
cyclosporine for a short while but on many occasions they have tried to
decrease the dose but my just skin erupts. It appears to me that the
methotrexate kept my PA under wraps until I went off it when it came out in
full force. Hope you have found this interesting and not too long winded.
Regards Pat

Hi,
my identical twin sister has PA and is a physician. She has been treating
herself over the years with ASA and NSAIDS but now has gone to a rheumatologist
and I believe he has started her on methotrexate. She is looking for a
physician who is experienced in treating PA and lives in Beloit, Wisconsin shihc
is very near Madison, WI. Does anyone know of someone? She is not very
experienced on the computer or with the internet which is why I am doing this
for her. Any resource information would be much appreciated in the form of
teratment for this disease. Thanks.
Teree

Hi! My name is Jo, and I am new to the list. I was diagnosed at 14 with
rheumatoid arthritis (now am 41) and two years ago it flared up really bad.
I also started developing psoriasis on my hands and elbows a few years ago.
The RD said I tested positive for RA, but said it may be more PA than RA.
Whichever it is, it's been a doozy the past two years. I've been on just
about everything, even methotrexate, and nothing worked until I tried Enbrel
a few months ago, and it has worked wonders. I'm still not back to where I
was before all this flared up, but at least it's not as bad as it has been.
Regarding questions about pain meds, I have a friend who has really bad
migraines. She has noticed that her body gets used to a med after a while,
and she finds that pain responds better when she rotates pain meds. Maybe
that's why you felt better when you took the med after having taken the
other.
Jo

Hi Gary. The problem with taking NSAIDS only, is that the sisease process is
allowed to progress whilst only being masked by the NSAIDS. Joint damage
will still occur. MTX and other DMARDS are used in an attempt to halt the
disease or evn put it into remission. However scary MTX may sound, PA
sufferers tend to be on very low doses, typically 7.5 - 17.5 mg, once a
week. Much of the info you'll find RE: MTX on the 'net, refers to its use as
a chemotherapy drug in much higher doses. My body - My choice. I take MTX,
and after 3months, it's given me back my life. The Voltaren helps a lot,
too. I did find some research via Medline that found Voltaren to be the
gentlest of the NSAIDS. Before the new Cox2 inhibitors were released, that
is. (Celebrex, Vioxx) All the best. Paul.

"Does anyone know of anything that is effective on Psoriasis of
the nails?
Right now I only have one fingernail that is not affected by the
Psoriasis,
in case you were wondering I've had all my toe nails removed
twice because
they were so thick and sensative."
Gary asked the above question. I have already posted a few
months back about a treatment that my dermatoligist recommended.
It has worked beautifully for me, but once again, I have to say
that I have no interest in this company or this product. It may
not work for others. It just has been a blessing for me.
It is called DermaNail and can be ordered through Summers
Laboratories, Inc. at 1-800-533-SKIN. It is NOT cheap and must
be used twice a day for at least six weeks to even see an
improvement. My feet had four toenails growing sideways and this
has stopped that, as well as the separating of the nail from the
bed on my fingernails.
Please, I do not sponsor or get any money from this
company.....it is just something my dermo guy passed onto me as a
possible help and it sure has! Good luck. Please Email me
privately if you have anymore questions.
Linda
Poulsbo, WA.

Hello Cheryl, This is how my Doctor phrased what I have. "An
inflammatory disease in the sacroiliac joints, like Ankylosing Spondylitis".
It causes me to have severe lower back pain. It also limits the amount of
time I can stay in bed. He said that my Methotrexate wouldn't help it much.
But I do know that, I don't like it one little bit. :o)
He did refer me to the Spondylitis Association site at
http://www.spondylitis.org/ . They have a exercise video that he says is
very good. Becky

Jayne, I agree!! When I lay down at night, my whole body just
starts to throb immediately!
Linda
Poulsbo, WA.

how does arava help psoriaisis?

Hi Everybody!
I was diagnosed with PA when I was in my early 20s.
I was treated at that time with a short burst of MTX and a longer regimen of
Feldene.
The disease went into remission after about 6 months of treatment.
I had been in pretty good shape for a good ten years (off all meds),
but lately I've been having a dandy flareup of both the psoriasis and the PA.
I've gone back to my rhumatologist and he's started me on 10 mg MTX/wk.
I'm also seeing my dermatologist biweekly for a dose of UV and a steroid
injection,
prednisone I think. STILL, I'm having trouble.
I'm interested in what role diet plays in the treatment of this disease.
I have been told by laymen that giving up bleached flour products would help.
I would appreciate any comments in this regard.
Meanwhile, I will search the archives and continue to watch and listen to the
comments and questions.
Thanks in advance to all involved!!!
DJ

Anemia is typical with both. Both as a result of the disease and as a result
of some of the meds we take. For instance methotrexate can cause bone marrow
supresssion in my experience.
Michelle

Hello everybody,
I'm new to the list and this is my first post. I was wondering if anyone else
has spondylitis.
My rheumy told me last week that I have spondylitis. He did not say "Ankylosing
Spondylitis".
Is there a difference?
Cheryl

Jayne,
Again, I would hesitate to second guess a RD who has
access to all of your records but if you aren't happy
with how you are being treated then yes, a second
opinion is in order. Another doctor could look at all
the tests you have already been through and probably
give you an opinion fairly easily. I know it can be
intimidating to tell your current RD that you want
this but remember this will be something you may have
to deal with for your whole life. The decisions you
make now can affect your health for years to come. As
for the possibility that you have been mis-diagnosed,
that is certainly a real concern but may be another
reason to at least have a consultation with someone
new. Each doctor has his own experiences and area of
expertise and it's posibble that a new doctor will
come up with somethig right off the bat that helps. I
seem to have gone on a bit, sorry. All I really mean
to say is you are the best judge of whether ao not you
are receiving adequate treatment.
Courtney

=====
Courtney C McCullough
thelockhorns@...

Anyone else know if anemia is typical with PA or RA?

Listen, before everyone attacks me, I am very sorry, that my reply ended
up on here. I meant to reply to someone personally, and I naturally hit
the wrong button.
I am very sorry to have my personal baggage displayed. I am having a
hard time right now, personal problems...I never wanted to display
them. This is all my fault, no one else. I tried to have it deleted,
but was told simply "too late".
I will leave the list if you all want.
Again, please accept my apologies....sometimes when my anger is out of
control, my mouth gets me into trouble...I am now pulling the foot out
of it.
SORRY EVERYONE

I was asked the other day if I went hot, cold, hot, cold from taking pain
medication. Could the sweating you were talking about be from the pain meds?
Some people naturally sweat more than others at night while sleeping. Waking up
w/ wet hair and needing to bathe more often. The Tarsum shampoo and other
shampoos for the psorisis if used more than a couple times a week can go from
drying up the psorisis to doing too much and drying the scalp further
aggravating the skin condition.Pat B

Hi Karen and welcome to this list. I think I joined sometime in Aug and
have found more answers and support from everyone here than my own
doctor or friends....I can't help you out with the methotrexate since I
haven't used it, but plenty of our friends on here do and I am sure they
will respond. I only have the arthritis in my lower back and hips and
take Daypro which is an anti inflammatory and Ultram for pain. I tried
Celebrex and no relief. Oh and I am 34....
Take care
Jayne

Hey PShaw!
I'm taking 150 mgs a day. And I am on Prilosec. I've been on Prilosec for
about 3 years now. Love the stuff.
What other meds are you on?

Thought I'd sort of answer two in one go. I was on the sulfasalazine for
about 2 months without any noticeable improvement. Things then seemed to
get slightly better then much worse. I've now been on it for about 6
months, but since I upped the NSAIDS a few weeks ago, it's been much
better - but I hate to think what it would be like if I came off them. I've
got a dodgy stomach anyway, so I'm not sure whether the sulfasalazine has
had any effect on that! Didn't notice any more headaches than usual though.
But my sed rate came right down, so the rheumy was pleased (she reckoned
mine was lower than hers!), even if I wasn't! I'm told most people take 3-6
months for the sulfa to have an effect and that 60% of people see an
improvement.
My understanding is that the sed rate is an indication of the inflammation
in your body. But (a) it could be high due to eg a cold or other infection,
and (b) it can be low but the pain is still there. In fact, I think a low
sed rate is quite normal in PA, whereas with RA it's likely to be high. So
it's an indication, but doesn't exactly provide all the answers.
prednisone for 2 months and
stiff he cannot bend them to walk without pain. The sulfasalzine
his stomach and given him headaches. His RA doctor said he needs to stay on
this medicince

Hi all,
I started on Arava around January 1st. After seven weeks on it, I developed
such bad diahrrea and stomach pain, that I was diagnosed with a probable
ulcer. I went off Arava, and had to take Prilosec, Tagamet and Sucralfate
every day for a month- till things healed up. I also tried Enbrel for a month
during this time, but quit due to A 20 LB weight gain in that month- carb
craving was bad! Once my stomach was completely healed, I restarted Arava
and haven't looked back - over six months of continual use now at 20 mg. I
did pop up to 30 mg for a month and saw no additoinal improvement. I need to
keep on the Prilosec and Tagamet however.
The Arava has worked since around 8 weeks on it- and I have had a gradual
small increase of improvement each month since then. I would say it was a
60% reduction in pain, swelling after 8 weeks, with another 5% gained each
month- to where I am now around 85-90% better. I must note that the
psoriasis is gone! That is not a minor thing either- I usually lose function
of my hands a few times a year for 8 weeks at a time- and so far- just a
couple of peels of skin on my thumb! Miraculuous!
Michelle

Hi all, Just wanted to let you all know that a bit of my stress is gone. I
got word yesterday that my disability application has been approved! YEAH! I
will receive my first check around the 22nd of this month. The only little
bit of stress is having to " redo" my budget as I'm use to getting paid
every two weeks and this is a once a month check. But thanks god it was
approved. I was a bit leary of the procedure. I am approved until February.
I asked her what if I can't work after then. She said a caseworker will be
monitoring me and if I can't work, it will continue. I can be on it for 2
years and if I still can't work at ANY job, I'll have to go through another
process to get accepted. I was so worried that I would spend months fighting
for this.
YEAH!
Angela

I would be interested in a PA conference and NJ is just a few hours
drive away. I live in VA with easy access to Washington DC
airports. I also teach at a University with a medical arts
component. So that is a second offer of location.
Tell us more! LaRita
Thought from LaRita
Live each day as if it were your last, because so far, it is. (unknown)

My husband has pa and has been on 4 500mg of sulfasalzine and 10mg of prednisone
for 2 months and has not seen any results. His knees are so stiff he cannot bend
them to walk without pain. The sulfasalzine has upset his stomach and given him
headaches. His RA doctor said he needs to stay on this medicince for at least 3
months to see if it works. Has anyone had these results with sulfasalzine?
Judy

I have been on MTX and Plaquinil together for over a year. Have
just recently come off prednisone. Although I have reactions to
most every drug, was pleased that plaquinil seemed to present no
side effects for me. Good luck!
Thought from LaRita
Live each day as if it were your last, because so far, it is. (unknown)

I use Carisoprodol Tabs (Soma) it is a muscle relaxer. For the past couple of
years it has really helped my lower back problems (Sacroiliac). I get spasms in
my back when I'm on my feet for to long. I need it to do simple things like
going to the store. One thing about my back pain, is it saves me money when my
back tells me it's time to quit shopping. Becky

Micky commented that she had never noticed anyone stating that
they also took muscle relaxants for the pain. I take Norflex
(muscle relaxant). Not everyday...just when I feel especially
bad. It helps me sleep a lot better for one thing and seems to
ease off on all the nagging aches and pains (mine seem the worst
around the sternum to the point it hurts to breath sometimes).
My doctor told me to take it anytime I felt I needed it. Thank
God he did because it has gotten me over several bad bouts of
painful soreness.
Linda
Poulsbo, WA.

Sure I would be interested, especially if it was a weekend or a long weekend
type thing. My wife would come and I guess a small registration fee to help
cover costs would be ok. I would think anytime of year is fine except the dead
of winter. I think its bad in OH so the last place I'd want to go is NJ when
the snow is flying. Your topics sounded fine. Maybe another could be
"Physician Management".
tx
Shayne

Hi all --
I am writing to see if anyone is interested in
participating in a PA conference? Not some
fancy-pants stuffed-shirt thing but an event aimed at
us real folk. We could get together with our spouses
and families and talk about:
Exercise
Physical Therapy
Living with Chronic pain
Medications
Alternative rememdies
Meditation
Helping others to understand
Dealing with spouses
etc. etc. Besides us we could get some physicians and
medical industry types. My first thought about
hosting it would be at my University in scenic
northern NJ since I can get it cheap and because we
are close to Newark Airport -- but I am open to
suggestions.
I have been talking with Immunex (the makers of
Enbrel) about co-sponsoring it and they want to know
how many people we could expect. Hence my question --
are you interested in attending something like this?
If so please write the list indicating how many people
you might be bringing and also to suggest topics of
discussion during the event.
=====
Robert, NJ Highlands
raharris@...

Remember the Pa chat is tonight at 8EST at www.drkoop.com
You must register w/ the drkoop site first and then log in and go to the chat in
the health chat room. The chats are setup in one hour blocks. If some other
group is there just hang around until time for the PA chat to start.
You might want to surf thru drkoop early to get familiar with the site.
Pat B

Angela: I had a similar experience and similar emotional reaction since
I too am on NSAIDS and other stuff. Only I had bloody streaks in stools,
not puddles of blood.
I had it thoroughly checked out through an uncomfortable procedure I
can't remember (ends with scopy) in which they put a tube with a small
camera inside of you and look around.
Couldn't find anything.
The conclusion was it was probably a case of internal hemmorhoids.
Hope that encourages you that not all cases of bleeding are cause for
alarm.. But you should probably have yourself thoroughly checked.

Thanks for your reply, but check my addres :-).
I think that USA government can not help all guys
from Russia :-)
--
Dmitry, http://www.the-notes.spb.ru/dp/

As a matter of fact I was told that it was very common to have more than
one autoimmune disease....and to expect more as we age. Joy.
Lyn
~*~*~*~*~*~*~*~*~~*~*~*~*~*~*~*~~*~*~*~
Ooops. My brain just hit a bad sector." -Anon
~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~
Fibroland: A free newsletter for those with Fibromyalgia/CFS
http://www.onelist.com/subscribe.cgi/Fibroland
~*~
Rheumathritis: a rheumatoid arthritis /autoimmune disease support group
that cares AND informs.
http://www.onelist.com/subscribe.cgi/rheumathritis
~*~

Dear Sirs,
want ask you. Is government structure consider human who have
PA invalid? Or this men also must be work as ordinary guys?
Are there government help for medical treatment and drugs
or etc?. Excuse me my bad english. Thanks.
Dmitry, http://www.the-notes.spb.ru

Hi all --
Below please find the new "posting guidelines" that
the list editors have put together for your
convenience. In looking through these you might
notice corrections of things any one of us may have
done -- please note that none of these guidelines are
aimed at any given individual! We have all been
guilty of practices that make the list more confusing
for everyone, and we feel that the list has matured to
the point where some gentle guidelines for posting
will make things easier for everyone.
Starting Monday these guidelines will be posted to the
webpage.
Thanks, Robert & Michelle
Posting Guidelines
I. MISSION:
The PsoriaticArthritis listserv exists to mediate
international communication for PA sufferers, their
families and friends on subjects pertaining to the
disease, treatment, and life with psoriasis and
arthritis.
II. ADDRESS:
a. All mail meant for distribution to the list
should be sent to: psoriaticarthritis@onelist.com
b. All mail directed to individuals should be sent
directly to the individual in question. Addresses for
all listmembers can be found in the "Members" section
of the Onelist webpage:
http://www.onelist.com/community/PsoriaticArthritis
III. SUBJECT LINES:
Address lines which indicate the subject of the
message should be as concise and as precise as
possible. People who are searching the archives don't
know what to make of message threads named "Oh MY!"
or "Digest 2703"!
a. Poor examples: - Question
- Pain
- Shaking hands?
b. Good Examples - Celebrex and DMARDs?
- Stomach pain
- Polite ways of refusing a handshake?
IV REPLYING:
When replying to a note try to be concise and
preserve bandwidth!
a. Keep an appropriate subject line. If subscriber
Seals Croft writes a note with the subject line
"Enbrel and stomach pain" use the same subject, not
"Digest 2703" or "Replying to Croft".
b. Copy just the appropriate parts of the original
letter, not the entire letter or digest.
c. Avoid replies which do not include
substantial new information, often called "Yeah, you
are so right!!!" emails.
V. EDITORS:
All messages must pertain to the subjects above and
the list editors reserve the rights to edit, publish,
or refuse to publish any email.
VI GETTING TECHNICAL HELP:
Please write Robert with all technical questions:
raharris@...

Hi all --
Work on the PA webpage has gone very slowly over the
last few weeks. I have added a few people to the case
history section, but that has been my only progress.
The start of every semester is hard on me, and I
consider myself lucky to have done that much!
So, you say, "How can I help Professor Harris with our
PA webpage?" Easy -- I have not had the time to go
into the archives to dig out all your introductory
notes. For one thing, I can only guess when all of
you subscribed. So here is my suggestion: please go
to the archives and dig out your own intro letter and
send it to me at the address below. I will code it
for the web and will place it on our page.
Thanks! Please let me know if you have any questions.
=====
Robert, NJ Highlands
raharris@...

The Doc told me there is a whole grocery store full of different types of meds
to try to fight arthritis. When you are trying to find the NSAID that works for
you it isn't always the strongest but the one you respond to that you end up
taking. I started w/ Relafen and it worked ofor a year until I built up an
allergy to it and switched to the Celebrex that just came out about that time.
The Celebrex went to work immediately, lucky for me. Some people have to try
taking meds for a few months to see results which I feel can be a crapshoot but
it works. Jayne, stronger isn't necessarily better but maybe your doctor doesn't
realize just how much pain you are in? Mine put me on pain meds because the
tendons clamped down w/out the meds and I couldn't move. He still had to find me
a DMARD but the pain meds kept me working. You shouldn't be in soo much pain. I
got funny looks when I went into the Emergency room this past week because of
the pain meds but I talked about what I take as normal everyday blah blah blah
and got treated. Maybe the doc isn't comfortable supplying pain meds? The NSAIDs
when they work naturlly reduce pain because they reduce the swelling that causes
pain. Too bad there isn't a wonder pill that works the same for everyone of us
in the exact same way so the arthritis fades out of our lives.Good luck
shopping,Pat B

I'm supposed to have Blood tests every month, a CBC one month and a CBC/Chem
Panel the next month.
Date: Tue, 28 Sep 1999 16:19:43 +0200
From: Eliane Segers <E.Segers@...
Subject: Re: Injecting MTX
I also have a question about mtx, I take 7.5mag/week (oral). At first I had
a blood test every two weeks, then every month and now every 3 months. If
there is no bad side effect in the beginning, the doctor said, it is not
necessary to have more blood tests. Now this is in the Netherlands, but
reading this list I get the idea that this is not done in the USA?
Eliane

Hello,
I have a question. I know this has been covered very recently
but I did not follow the whole conversation. Are hot bath a good
idea or not? I do take a hot bath in my whirlpool tub and it
feels really good while I am in there but when I get out I feel
like my joints are stiff and swollen. I have to laid down for a
while after the bath. I do not use HOT water. My husband says
water is warm not hot. I have high blood pressure so I am
careful not to get over heated. I do not have it hot enough to
make my skin turn red. Any thoughts on this.
Lee Ann Walter
Wife of Steve;
Mom to: Stephanie 16; Krystle 14;
Caleb 2.5+; Katie 2.5; Joshua 1yr.

Hi Everyone,
I'm wondering if any of you have a problem with swallowing and your
stomach not emptying properly? Guess I'm really wondering if it has any
connection to PA or Sjogren's or fibromyalgia?? I've had 2 different
tests recently and my esphagus is not working right and stomach not
emptying properly. I've tried both medications that are available in
the US and both made me very depressed. (I told the specialist that if I
must make a choice between feeling sick and feeling depressed, I'll
choose sick. I feel depressed enough when the PA is causing pain.) Now
I must go to the Univ. of Michigan hospital to see a doctor there. I'm
told there's a med. available in Canada that doesn't cause the side
effects that Reglan and Propulsid gave me. Does anyone know about this?
Marsha

I have had several attacks of aspiration, as well as a chronically inflamed
larynx and laryngitis so bad, I can't speak for a week.
It is a good idea to a bit teaching hospital for this one! If you need help
getting an NYC doctor let me
know.
I would also recommend the OTC product called Salivart Spray-it is my life
line at times and it is actually pleasant-not gooey like all those other
artificial salvias.
PS-how are your eyes doing?
Michelle

Jayne,
Hope your feeling better soon. I sometimes choose to overdue it some so I can
live somewhat of a normal life. I know I'll pay for it the next day so I plan
accordingly.
Naproxen didn't put much of dent in my pain, I was on it for six months. After
that we tried a different NSAID every six weeks till we found something that
worked much better. Naproxen, Celebrex, Arthrotec, and many others. Now I take
Clinoril and it works pretty good. All the doctors I talked to felt that
everyone has a NSAID that works the best for them. Naproxen is also a NSAID so
I wouldn't feel afraid to try some different ones. The only down side that I
know of is cost. Talk to your Dr.
Good luck
Shayne

Come all ye! Michelle and I host:
Psoriatic Arthritis Chat
at drkoop.com Wednesday nights at 8p, EST.
Please come to http://www.drkoop.com and log
in under "Physical Conditions" on the left hand
column. Chats are a great way to communicate
with other people in the group!
===
Robert, NJ Highlands
raharris@...

I am having an extremely bad day...My back is killing me. Do you think it is
because I walked more than usual yesterday. I probably walked 4 miles at the
flea market....but got some great Halloween stuff. The pain is torture,
especially
lower left back and butt cheek...ouch!!! Feeling real sorry for myself today,
cancelled all plans for the day. Just don't feel I can be my "nice" self.
Sitting on ice as we speak (type). Now I am sure all of you think I need to get
off the Naproxen and go on something stronger..I am just afraid. Maybe that is
admitting I really have a problem here. I see the Dr on Fri, I guess I will
have to confess to him, I am in agony. It's not like I can pick up the phone
and
complain to any friends, since they are strangers to this. Thats why I logged
on and thought I would write to all of you, the ones who have been there and
understand. What a pitty party......As I sit here, my left hip is throbbing....
Well, thanks again for listening......ouch ouch ouch......Jayne

Dear Kathy:
Yes, those ridges are suggestive of psoriasis in the nails. When my PA
flares, I usually get one or two fingernails that develop psoriasis.
What usually happens is that I get psoriasis beneath the nail or it
begins on the top and creates a hole (pit) through the nail. (That one
is the worst). It can appear anywhere on the nail, not necessarily
where the nail growth begins. You will feel it coming on, because it is
painful and sometimes the joint at the tip of the finger or toe will be
warm and red (sausage like). I have experienced it more on my toenails,
I suppose because of the relationship to fungus and having to wear
shoes. The nail eventually separates from the nail bed. I tend to wear
a bandaid to protect it, so I don't rip the nail off and I keep it cut
short. Of course, the bandaid hides the ugly nail.

Hello,
I had my first appointment with the RD today. He confirmed what
my family Dr. said. I do have PA. He did four x-rays of my
lower back. I will know what the results are next week. As much
as I do not want anything to show up, I would be relived if
something did. At least it would give me comfort in the fact
that this is not all in my head. I know the PA diagnosis is
right but my lower back and hips are a mess. The RD had me bend
and touch the floor with my fingers today. He was pleased to see
I could barely touch the floor with my finger tips. He said "
that is good" I said " maybe, but I used to be able to stand
straight legged and touch the palms of my hands flat to the floor
with no trouble!"
I am suppose to see the RD now every 4 months and see my family
Dr. in between. When I got home my husband informed me that our
family Dr. had told him today that he is going to be working in a
hospital and is giving up his practice! Now I have to find
another good Dr. I am depressed. I have to let the RD know. I
will have to see him more often.
Lee Ann Walter
Wife of Steve;
Mom to: Stephanie 16; Krystle 14;
Caleb 2.5+; Katie 2.5; Joshua 1yr.

It's so great to know that there is others who understand my pain. I was
diagnosed about a year and a half ago with PA. It first started with the
bottoms of my feet hurting so bad that I could hardly walk. I was hobbling!
Then the swelling started. Two toes on my right foot first, then a couple of
weeks later, 2 toes on my left foot (now I am well balanced!). Next, came the
swollen ring finger on my right hand. I also have little lumps off the sides
of my feet and swollen ankles, pain up my calves. Really sore on my heels!
I also have TMJ that flares up occasionally. I am 52 years old (some days I
feel and walk like I am twice as old)ha. Back pain, especially low going
into my buttocks is a companion. I developed psoriasis of the skin when I
was approx. 35 years old (very mild case). I only have 2 tiny spots on my
right leg now. I have tried lots of different meds and am now on MTX (15 mm
per week) and Motrin 3 times a day (800 mm). Oh, I am also on folic acid for
anenmia. Just as bad as the pain in the fatigue which can be just horrible
somedays where I really have to make myself do anything. Gee, I hope I
haven't depressed anyone with all of this crying. Good luck to you all,
Teresa

By gleaning info from e mail addresses, I have calculated that there are
three canadians, nine UK'ers, two Russians. Two Netherlanders, one Swede,
three Australians, and tons of Americans.
Only 38 people of 156 answered the survey, so we will combine the survey
results with what we got from the list and get it out to you all,
Michelle

Hello,
There is a new survey for the PsoriaticArthritis community.
What type of treatment are you CURRENTLY
TAKING?
----
Possible answers are:
o mETHOTREXATE
o Plaquenil
o Neoral (cyclosporin)
o Azulfidine/Sulfa
o Imuran
o Natural Supplements
o Enbrel
o Arava
o Steroids (cortisone)
o Other DMARD not listed
o NSAIDS for pain (incl. Aspirn and advil)
o Natcotics for Pain
o Tylenol for Pain
o Other not listed
To vote, please visit the following web page:
http://www.onelist.com/surveys/PsoriaticArthritis
Note: Please do not reply to this message. Survey votes are not collected
via email. To vote, you must go to the ONElist website.
Thanks!
PsoriaticArthritis Owner

We are tabulating the results from the last survey, and Robert is contacting
a large pharmaceutical company to see if they might host a meeting for us in
the New Jersey area.
In the meantime, there is a new survey that asks: What are you currently
taking for medication?
Go to: <A
HREF="http://www.onelist.com/subscribe.cgi/PsoriaticArthritis"
Mailing List Communities</A
Thanks,
Michelle

Come all ye! Michelle and I host a Psoriatic
Arthritis
Chat at drkoop.com Wednesday nights at 8p.
Please come to http://www.drkoop.com and log in under
"Physical Conditions" on the left hand column.
Chats are a great way to communicate with other people
in the group!
===
Robert, NJ Highlands
raharris@...

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I dropped in on my profs today and told them about my arthritis and one
of them directed me to The Blundon Centre at our university.&nbsp; It is
a centre which is in service to students with any type of disability who
require alternatives to the normal class times and exams.&nbsp; Suffice
it to say that I was thrilled to find out that our campus does indeed recognize
this issue and is very helpful in providing for students with these
issues.&nbsp;
All I need is to have medical documentation so that the service can assist
me in anything I may need.&nbsp; And the student does not have to deal
directly with the prof, but instead the centre does it for them...pretty
cool, hey?&nbsp; I guess alot of universitys and colleges have the same
type of set up.
<p
<br

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In Newfoundland, where I am, it is the Canadian Paraplegic Association
who gives out the permits.&nbsp; I suspect it would be the same in other
provinces, but I am unsure.&nbsp; I got one because I needed a larger space
to open my car door. I need alot of room to manoeuver in and out of my
car.&nbsp; So, if the spot is a regular size spot, it is really not much
use...I could never figure this one out.....any fool knows that someone
in a wheelchair or with assistive devices needs more space to get in and
out!!! Just had to vent that one.....
<p
saying that I still require it.
<p
<br
<br

In Connecticut, you get the form from DMV,
Then you fill in your portion and have your doctor fill in the next section
and sign it. Then you either go to DMV or mail it in with $2.00!!!! Then
they give you the window tag to hang on your rearview mirror. This is best
because you can bring it from car to car - even rentals on vacation. It is
good in all 50 states!
Michelle

Your not alone! I long to be able to sleep for 8 - 10 hours, and to still be
able to function.
THANK YOU!!! FOR TELLING ME I AM NOT ALONE.

Hi Kathy and all,
I was lucky enough to go into almost complete remission almost as soon as I
became pregnant with my son (he's now 22 mos). I was on surgam and
sulfasalazine at the time, went off it as soon as I suspected I was pregnant
and was pretty much in remission already. The remission lasted a full six
months after Griffin was born -- my rheumatologist and I attribute that to
the fact I was breastfeeding exclusively, thus keeping those pregnancy-like
hormone levels up. When symptoms began to return around that time, I went
back on same two drugs, but suffered a major flare about six months later
anyway. Doc decided the sulfa had stopped working (this is quite common,
apparently, when you go off a drug and then start back on it again). So when
my son was 14 months old, I went on plaquenil. He stopped nursing then
because it made my milk bitter. And, although the doc warned me about this,
it was still traumatic. However, I was in agony at the time with fingers as
big as sausages and couldn't care for him the way I wanted. I also had some
cortisone shots for immediate relief. The plaquenil (or some higher being?)
took about seven months to really kick in but I've been doing pretty good
since then (fingers crossed). As far as the remission goes: my doc says "you
don't need me -- you just need to stay pregnant!" I'm not so sure that's an
option. My hubby and I have yet to decide whether to go for child number 2 --
but if we do, I hope with all my heart that I have another remission. I will
be sure to continue nursing frequently (I had cut back to part-time because I
returned to work when he was six months old) for as long as I can, not just
for the arthritis but because it's a truly wonderful, miraculous thing.
Anyhow, that was my experience with an almost 15-month remission. Wish it had
lasted longer.
take care
skana
You wrote:
Has anyone gone into remission and stayed in that state? For how long? What
drugs (or miracle or whatever) got you there, and how did your doctor
handle it? At what point do they declare a remission of PA? This is
something I haven't seen much of anything about and was wondering. Looking
for hope, actually! ;-)
Kathy Fowkes
fowkes@...

Just discovered this news about sinus infections, fungus and the
immune system. Interesting because so many of us have sinus
problems and of course, autoimmune disease (s).
http://www.pslgroup.com/dg/129e7e.htm
Linda

I have spinal PA that is a lot like AS. In fact, I have seen PA web
pages that refer you to AS web pages if you have spinal PA. The
Spondylitis Association of America has a great web site
(www.spondylitis.org) and they specifically mention PA. Listen to
the song "We know how it feels" on that page. It makes me laugh
and cry. My sacroiliac joints are major problems and I have had
cortisone shots there for some relief. My rheumy says those joints
will eventually fuse. Another similarity to AS. Finally, I too have a
lot of shoulder pain. Can't lift arms, swim, etc. This seems to be
part of the PA as it flares.
Finally, my opinion on waterbeds is that I don't want to sleep on
anything else. The heat helps my aches and pains. We have a
very firm, no wave mattress. I've had a waterbed for 10 years and
as long as it isn't a sloppy free flow mattress, I'm in love.
Thought from LaRita
Live each day as if it were your last, because so far, it is. (unknown)

I suffered for years with terrible sinus problems. Had surgery
and still had problems. More surgery was recommended. Finally
quit smoking and BIG difference immediately. I still have sinus
problems occasionally, but not anything like when I was smoking.
I also agree with some of the others who posted about smells
bothering them. I wore perfume everyday and just loved it.
Right before my PA diagnosis, I quit wearing perfume, cannot
stand the smell anymore. I now avoid perfume counter sections in
department stores, gasoline pumps....anywhere there is a strong
scent. It is very irritating. This came on suddenly and I never
thought to associate it with PA.
Interesting thread here...Thanks.
Linda
Poulsbo, WA.

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I just heard the news that The Arthritis Society of Canada ( I am in Canada)
has a new spokesperson.&nbsp; Seems that Wayne Gretzky has been dx with
arthritis and lo and behold!! Guess who the new spokesperson is!&nbsp;
Now don't get me wrong!&nbsp; I think that having celebrities as spokespeople
are good ideas to create more public awareness of the subject.&nbsp; But
it just bugs me a little that there are so many other people out there
with arthritis who would make fantastic spokespeople...all becasue of who
he is...anyway, that is all I got to say about that for now..but I thought
you may like to know about it.
<p
<br

Hi to all of you from sunny Arizona. I'm 46 years old, 2 kids, 2 grandkids. I
also have family in Miami, Sebastian, Jacksonville and Dayton, FL. and Atlanta.
May all of our friends/family get safely through this horrendous hurricane!
I have had P since 13 years of age. I only used OTC shampoos for many years.
By the time I reached my 20's / 30's my scalp was SO BAD that I finally visited
a dermatoligist. I had major nail pitting by this point also. He prescribed an
ointment for me that he had "invented", the pharmacist would have to order
ingredients and mix this stuff up!! But WOW after a month of nightly treatments
I went into remission. (NOTE: I also left a stressful job 2 years later!)
Now this doctor also explained about PA, and other things that could start to
manifest down the road....
So I now have 2 slight chronic areas of P, and major PA in my right toes, and
elbow. I have not returned to the doctor. #1- My insurance will probably go up
#2- what can they really do about it.... DRUGS DRUGS DRUGS? I try the holistic
route whenever I can!
Is it all just pain management? Does anything really reverse, or slow this PA
down? I try to surround myself with upbeat, caring people... stay out of
stressful jobs/situations... and pray this PA keeps its slow pace. I know
about pain though! It can be mind numbing at times.
Thanks for listening. Stay Happy ! Stay healthy!
SAILBOAT@...
PS.. Is this necessarily hereditary? I had an injection of penicillin every day
for 5 days when I was around 10 years old. Just a few years later my immune
system is goofed up and I have P symptoms. Has anyone ever studied massive
antibiotic therapy and immunosuppres.. diseases?

I have had a problem with shoulder bursitis that comes and goes in both
shoulders. It ranges from a mild ache to major pain - can't fold clothes or
raise arms. For me it has always been the PA causing it. I have had to have
cortisone shots directly into the bursa a few times, when the
immunosupressants didn't handle it. The shots work, but I know you can't have
more than a few into the same joint because it destroys the tendons and
ligaments in the joint (or so I hear).
Michelle

I too have PA in the lower back- the sacroiliac to be specific. It has been
the worst spot for me and the first to show signs of PA. My back pain started
in my teens. The morning stiffness is horrible as is the searing pain when I
have a bad flare- like I am now.
No you are not alone!!!
Michelle

I have mild nail ridging and nothing like pits at all. I guess my nails
mostly look "normal" :-)
I also have "dry" arthritis which means that I have almost no visible
swelling even in a severe flare. Even my psoriasis is relatively mild.
Yet with all that I am considered to have "severe" PA. It's very
weird to have so much pain and so many meds and and have none
of the external markers. It made the diagnosis take awhile. After I
had the disease a few years the patterns of pain were classic PA
and that helped.
Fortunately my rheumy says "well, you can't see a headache and
we believe in those" and he believes my reports of what he can't
physically see.
Take cover if you're on the US east coast. Looks like the hurricane
is gonna dump some water on us! I have a sister in Orlando, FL
and a brother in Brunswick, GA and they are preparing for severe
weather! They are in my prayers! Have a great day all! LaRita
Thought from LaRita
Live each day as if it were your last, because so far, it is. (unknown)

Michelle -
I think everyone is getting a little too paranoid about what the person wrote
a few days ago.
I was trying to lightened up the subject by saying it's very rude! Meaning,
MY TOE HURTING IS VERY RUDE!
I have never said anything to anyone about sharing. I agree with sharing.
I really wish before you posted that you would have e-mailed me first. I
don't want everyone thinking that I'm running around saying anyone who
complains is rude. We have a right to complain.
Read the context of my posting, it was extremely light hearted.
I really can't believe this... I am extremely hurt. Since I have subscribed
to this community I have met many people, a lot of them I correspond to
directly. And when I have a problem I DO NOT post where everyone can read,
in case I MISUNDERSTAND. But I AM posting this one.
And Kathy - thanks for taking the time to read and understand my post.

If it's not too complicated, it would be great to do a survey of who has tried
what medications therapies, and somehow compile those results so that people
could email others who have tried them and compare results. Maybe as a side
question it would be good to know what *other* medical conditions folks have
(that may or may not be causing them related health problems) and which folks'
*only* real disease/condition is the PA, you know?
I am particularly curious about this as I think there is a division in the list
between those with multiple health problems and those with, basically (or
apparently) just PA that is afflicting them. With more conditions to treat,
there will be more medications thrown into the mix, clouding up the picture
somewhat.
Similarly, with the medication survey, I have found past comparisons of how
we're feeling on a new med (e.g. Arava) to be often clouded by the fact that we
are often on NSAIDs at the same time and it's hard to tell how much which one is
actually helping. It's already hard enough to compare individuals results
since we all react differently to different meds. I'm looking for a way to
maybe sort things out a bit.
Maybe something like:
Do you have other medical conditions you are being TREATED FOR besides PA?
(select all that apply):
No, none significant
RA,
Osteoarthritis
Ankylosing Spondylitis
FiibroMyal,
JRA,
Diabetes,
Allergies
Carpal Tunnel Syndrome
Chronic Fatigue Syndrome
others (one's that have been mentioned on the mailing list)
Which of the following meds/tharapies have you tried to treat the PA and how did
they help?:
Not Tried / No Help / Little Help, stopped / Improvement, but lost
effect / Still helping now
DMARDS :
Arava
Enbrel
Mtx
Gold
Sulfasalizine
Plaquenil
(Others you can think of?).
NSAIDS:
meclofenamate
voltaren
indocin
feldene
arthrotec
celebrex
vioxx
(others you know of)
THERAPIES:
antibiotic therapy (e.g. Minocycline)
water therapy
accupuncture/pressure
diet modification
biofeedback
chiropractic
nutritional supplements
(others you can think of)
I'm sure there's many I've missed...any input?

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I was the student who thought that I should let my profs know about my
medical conditions, just to let you know.&nbsp; I have made an appointment
with one already, to make him aware of problems that may occur for me throughout
the semester.&nbsp; I have also been considering going to the campus newspaper,
to see if they are interested in doing a story on students with conditions
that may affect their attendance and quality of participation.
<br
<br

Yes, I get a lot of sinus problems. The epi-thingie (LOL) that hangs in the back
of the throat gets swollen and makes me think I have trouble breathing, when I
really don't. Drainage.Smoking? Hubby tried to quit a few times but still lights
up. With bad sinus and not a good nose for smells I find it odd that magic
markers and white-out smells go right in my nose and make me queasy.The recent
comments on spelling were tacky and the humor followup just as bad. I suggest
forgetting they ever happened. I enjoy responding personnally to some of the
emails by clicking on the name of the sender. I get more information on subjects
I am personnally interested in and reccommend it to everyone as another means of
learning. If a "snakeoil" salesman uses the list for gain the moderators should
be notified ASAP. Send a copy of the offense email in along w/ the
notice.Another weekend over. Two rooms straightened and two dogs clipped. The
sinuses hate the dust but the dogs enjoy the massage from the vibrating
clippers.I've been trying to figure a wy to reduce stress. I just let my brain
roam and end up getting stressed.Any ideas on fighting
stress?

Hi all,
I too have had sinus problems since I was a child, including allergies to
most everything- dust, mold, pollen, trees, ragweed. weeds, eggs, milk- the
list goes on ad infinitum.
I have decided that it is all part of my whacko immune system- overreacting
to the world. The sinus infections and headaches are a result for me of the
allergic conditions in my respiratory tract
making a good environment for germies.
I always get very swollen inflamed passages, asthma and the like. I think
germs like warm, moist, dark places to grow!
Since I had a sinus surgery to clean out a lot of polyps and the like, my
sinus infections have been nil as long as I take the appropriate meds to keep
the allergic response dampered down.
Michelle

Hi all,
I woke up this morning, actually in the night...4 AM, and seem to be in another
flare. I don't know if you'd call it a flare or not as the pain never goes away,
but today it is MUCH worse. When I got up at 4 it took me 5 minutes to get out
of the bed and to the bathroom ( it's right outside my bedroom door). I took a
tylenol #3 then as my regular pills weren't due. I hardly slept between 4 and 7,
so much pain. It was still bad when I got up at 7, took my normal pills and 2
more tylenol #3. I get up at 7 and have the kids out the door by 7:50, but not
today. I needed my husband to make the lunches and help. This NEVER happens, I
mean having to have him help. I usually can get up and go, even with a little
pain. I don't know what triggered the increase. It is now 10:35 and I still have
a fair amount, although not like this morning. I have cried and felt sorry for
myself today. Why me?? And why can't it always be the same so I know what to
expect? I just start feeling a little more normal and then this happens. I
wonder though, I have had a bit of stress in my life the last couple days. They
say stress triggers it..I'm starting to beleive it.
Just needed to vent. Thanks

YOU ALWAYS HAVE CHOICES.

I "wander" the same thing. Ease up, one thing I've
learned is that normal spelling and grammer rules are
relaxed to the point of non-existence in e-mail. I may
of missed some preceding message that would predicate
this critique, but even so let's just all get along
and not sweat the small stuff.
Courtney
===
Courtney C McCullough
thelockhorns@...

Have any of you ever smoked or smoke now??? Wondering if there is a
connection somehow.....just curious.

I have suffered from psorasis for ages but has recently flared due to many
reasons.............
I used to live in France and had an excellent dermatologist who prescribed
soriatane but I cannot find anyone here who willprescribe it to me, I am now
on methorexate, 15mg per week and have suffered no side effects except
weight gain, can anyone else advise me of other side effects. I was
wondering if there are any other psorasis people who would like to meet etc
and perhaps organise a visit to the dead sea?????????/
david.

This is a reminder that,
While solicitations for any product are banned from the list, I have no
control over what you all do in your spare time, writing directly to each
others mailboxes.
Of course, e mail addresses can be gleaned from reading messages from the
list. If anyone becomes a real pervert or something and gets out of line off
the list with a bunch of, I would consider banning them from the list. If it
became clear that someone joined strictly to hawk their wares, they would
also be banned.
Banning someone from giving advice on a treatment that they have had success
with
is not fair, however. If it is a specific product from which they gain
financially ... we can only hope for integrity.
Michelle

If you wish to participate in our new survey, go to the one list website and
answer the question: Where do you live?
I will post the results in two weeks after everyone has a chance to respond.
It is anonymous and will give us an idea where we are reaching. If we find
we are not reaching certain areas, I will with Roberts help try to figure out
ways to get the message out that we are here in those areas.
Thanks Michelle
The survey will also help us figure out what area of the country is most
convenient for any meetings we want to have in the future.

Vicki,
I asked my doctor at Columbia Presbyterian again about liver biopsies. Having
been on nasty DMARDS for almost a decade I am concerned as well.
He claims that they have found that the blood work is pretty darn effective
in keeping an eye on the liver, He also says that no baseline or pre-test is
necessary unless you have had problems or other conditions that effect your
liver-
I guess like hepatitis or alcohol or drug abuse, etc... There are risks with
a liver biopsy and a great deal of discomfort.
The risk-benefit ratio as well as the comparison of the bloodwork done
monthly- vs the biopsy would be questions I would ask your doctor.
Mind you, years ago doctors did these biopsies annually on those of us who
take DMARDS- the standard now is not to do the biopsy unless the liver
function goes haywire as shown by lab tests.
Michelle

Dear Janet,
You use this constantly and it has been keeping me awake at night <g
to figure out what it means?
Michelle

I went to the rheumatologist today and he confirmed my suspicions that I am
developing sausage digits in my right hand. I have characteristic swelling
in my hands and pain in my wrist, radiating up to my forearm and down into my
fingers. I have also lost some strength in my grip, and it's become
difficult to write sometimes.
So, it appears that my PA is progressing. :-( He took baseline Xrays of my
hands and raised my MTX dosage from 10 to 12.5 mg/wk, and we'll go from here.
The good news is we have lots of room to work with w/ the available MTX
dosages, and we talked about how some of his patients are on cocktails of
drugs, so all is not lost, yadda, yadda. What's bizarre is my knee and my
hip, the two joints initially affected, have been fine, but my hand is
exploding. Darn wierd disease. Thank God I have a good doc.
I feel like I'm being an incredible downer and have a lousy attitude, and I
don't like it. Pep talk, please!
Patty

Janet -- What is PCOS? I haven't heard of it before.

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Has anyone else here been afflicted with this very painful and immobilizing
condition of the foot?&nbsp; I was struck down with it about a year into
my PA.&nbsp; And in fact, it is why I was initially put on mtx.&nbsp; I
would have to put stacks of pillows and cushions on the side of my bed,
just so that I could get out of bed in the mornings and even then it would
take me several minutes before I could finally support myself on my feet.&nbsp;
I also had to wear well cushioned footwear and found joggers to work the
best.&nbsp; I got to a point where it was almost impossible for me to walk
because of the pain and I began using a cane and hobbled along, with the
pain radiating thru the soles of my feet with every step I took.&nbsp;
It was like my feet were in a permanently cramped state.&nbsp; Fortunately,
I finally got to the right doctor who dx me immediately and got me to a
rheumatologist.&nbsp; It is definitely associated with PA and I have been
so lucky to never have it bother me again.&nbsp; I also wear a pair of
very good adventure shoes and they are extrememly comfortable, due to the
dual cushioning in the foot.&nbsp; Apparently such a sole is good for this
condition.&nbsp; But I remember the pain so clearly.
<br
<p

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I was originally dx with psoriasis and a year later was inflicted with
psoriatic arthritis literally overnight.&nbsp; The Arthritis Society (Foundation
in USA) states that 1 in 10 people with PA will also have psoriasis.&nbsp;
Or is it the other way around??? Now I got myself confused&nbsp; *giggle*.&nbsp;
The mtx assists with symptoms of both.&nbsp; My mother was dx the same
way.&nbsp; First the psoriasis and then the PA.&nbsp; But hers came much
later in life (her 60s), while mine was in my 20s.&nbsp; I also have other
medical problems such as diabetes and PCOS, plus suffer from panic attacks
and anxiety.&nbsp; I also developed lactose intolerance about a year ago,
but I think that may have something to do with one of the meds I take for
PCOS and diabetes.&nbsp; I sometimes wonder if there is a connection though,
between all of these ailments.&nbsp; Just thought I would share this.
<p
<br
<br

My personal advice based upon my own experience is that you should try to get
as much insurance (just term -- not whole life) as you can while you are in a
mild situation. AND this is very IMPORTANT pay the extra premium for them to
pay your premium should you become totally disabled! My husband is very very
thrifty and turned this option down on our new policies back in the early
80's. Then in 1992 I finally got awarded permanent social security
disability dating back to 1990. My agent told me that had I this option, I
could have had all my premiums paid by Northwestern Mutual Life (The Quiet
Company) and I could have converted it to whole life-which builds cash
value!!!!! YOW!! I was so bummed.
Now I pay $64/qtr at age 39/female nonsmoker for $200k. it is term and will
end at age 70 I think.
I applied twice to other insurance companies and found I am now UNINSURABLE!
Michelle

Severe rebound effect in psoriasis
Infections
Thinned skin
Red/purplish marks on skin
Brittle nails/hair
Weight gain
Moon face, bloated abdomen- an actual increase in the # of fat cells in the
body.
A cushinoid dowager-like hump at the back of the neck.
Hypertension
Diabetes
Permanent Adrenal Insufficiency

Hello,
I just wanted to suggest to those of you having stomach problems to ask about a
stomach medication...zantac ( this can't be taken if taking birth control pills
), or cytotec. I take arthrotec, which has cytotec and it has really helped. You
can also get cytotec alone. i have a bottle of it for the times when I need a
little extra( you know, those italian or mexican meals!). Anyone who taked
anitinflammatories of any kind should automatically be put on one. Also, just as
a footnote, anyone taking cytotec cannot take anything with magnesium in it.
That includes some calcium tablets and rolaids. i take calcium alone and tums.
Good luck
Angela

Aloha,
My name is Sarah and I am new to the list. It is good to know that
there are people out in the world who know what PA is about. When I was
diagnosed 20 years ago, there obviously was nothing like this. My PA
has travelled to most every joint. I have taken methotrexate for 18
years, going off when in remission. It took me 1 year to decide to take
it, I was scared at first. I have to say, that it has worked for me.
The only thing I notice now, is that I am more prone to infections and
my veins are shot from the continual blood work. What has given me more
trouble are the NSAIDs and cortisone injections. I have had ulcers,
gastric reflux and several abdominal surgeries. I would love to try
Celebrex, but I have allergies to sulfanomides (sp) and cannot take it.
I would even consider Enbrel, if it ever gets FDA approval for PA. Pain
killers made me too depressed , and I do not need that! Cortisone
injections gave short term relief, but long term problems. I refuse to
have another injection, ever. When I read the emails, most of you sound
young. I was young (25) when I was finally diagnosed, it took about 1
year for the doctors to make the dx. I have been on almost every NSAID
there is, and other meds (including gold shots). I found that you have
to find out as much as you can about the disease and ask the doctors
lots of questions. I cannot recall what it was like to wake up without
stiffness and pain. I think that I have adapted my lifestyle and know
my limitations, but sometimes I go overboard and suffer for days. I was
living on the mainland and felt more miserable in the cold and I could
not work anymore. I always felt better in the summer, so I moved to
Hawaii, where the weather hardly changes. No, it did not cure my PA,
but I can be more active and have been working for 13 years in the same
job! I want to thank Michelle for starting the list.
Sarah

Hi Danielle
As I mentioned before, I had remissions with both my pregnancies but its true to
say that it came back with a vengence about three months after delivery.
However I really feel that over the years they have kept me going. I have had
to keep going for their sake and it has kept me mobile when otherwise I may have
been sitting feeling sorry for myself. Having them has made me carry on as near
to normal as possible and I have always tried to push the PA to the back of my
mind. I admit it hasn't always been easy and I am lucky that it hasn't affected
me as badly as some. I always wanted children and I am so grateful I have my two
now.
Angie

Angie -
I've been thinking about having a child, but the arthritis is my main
concern. What if I can't take care of one later? I've heard the possibility
of a remission exists, but what about afterwards? I've also heard when it
comes back, it comes back strong!
I'm so torn. But I don't even know if I can get pregnant. Makes me sad for
my husband. I know he wants children. We have talked about adopting. But
again, I'm left with the fact I might now be able to handle it. Five cats is
a tremendous strain!
Danielle

Hi Janet
When I conceived I was only taking Ibuprofen . Whilst pregnant I went into
remission completely so was able to manage without any medication at all.
Wonderful!!!
Angie

Did anyone see the news report on NBC this past weekend concerning the woman
who took anti-inflammatory drugs for a long time and it gave her a bleeding
ulcer?
I know my Dr. has told me it could happen. But I was always under the
impression it would happen to people who take an overabundance! This woman
they profiled just seemed to be taking the amount I'm taking.
That's pretty scary.
Jayne - reading your post made me think of that. I guess we have to be
extremely careful with those NSAIDs. But, what do we do with the pain? Live
with it? I really wish they would come up with something!
Danielle

Diane -
I've heard of SAM-E but I've never heard of anyone taking it. I'm so leery
of those types of medications. Of course the medicine I'm taking with my
Dr.'s supervision seems to be hurting me also.
Keep us informed please of your progress on this supplement. I would love to
get on it if it works.
Danielle

Hi everybody,
Lucky us. I too have Sjogrens and have become a walking reference manual on
it.
It is characterized by dry mouth, dry eyes, and dry areas in the body that
also produce moisture (i.e., vagina). It can also cause swollen lymph nodes,
remittent severe laryngitis, (with aspiration difficulties) and internal
organ problems.
Please go to the SSF website for all the fine details.
Michelle <A HREF="http://www.sjogrens.com"

Hi all,
First a question about this board. I never really know how to respond. What I do
now is start a new message to pa list. I notice some of you, in your responses,
include an excerpt( spelling?) from the message you are responding to. I wonder
how this is done. i also noticed on the most recent posting ( I get the digest
form) that a couple people included the ENTIRE past digest. i don't want to do
this, so that's why I'm asking.
And on to a question, I have developed a chest cold over the last few
days..started with a sore throat for 2 days, then to sinuses ( at this point
still thought it was allergies) now today, I have intense chest congestion. Sore
throat is gone..still stuffy. I have been taking all my meds, as well as vitamin
c, echinesia( spelling?) and zovirax ( also have a cold sore). Wondering if
there is anything else. And also, I was told way back when with the metho to
watch for any chest problems. I really think this is a cold, but should I
mention it tomorrow when I go for my injection?
Angela

I have heard a lot about pred on the list lately but don't remember
anyone sying anything about the importance of calcium.
Ask your doctor. If you are on pred you should be taking calcium
supplements to prevent ostheoarthritis in the future.
Take care,
Pat B

Just thought I would mention that I too went into complete remission with both
my pregnancies. It came back about three months after delivery both times. I
have had PA for about 14 years and am currently thinking about another baby.
The thought of another remission is also nice. I wonder if anyone has gone into
remission whilst pregnant one time and then not with the next pregnancy?
Angie

Hi Alysia
I have had PA for nearly 15 years and with both my pregnancies the PA went
into complete remission for about 12 months, then came back with a vengence!
I am currently considering a third child plus the thought of another
remission is nice, I wonder if I would definitely go into remission again?
Angie

hello all,
May I ask what sjorgen's syndrome is? You say that swollen glands are part of
the disease. This has me thinking. My 7 yr old daughter has swollen lymph nodes
in her neck/throat. She's had these for about 3 yrs. The doctoe has always said
it is a reaction to an allergy. ( they first started when she had alot of fly
bites 3 summers ago. She is VERY allergic to fly bites). Anyway, what else goes
with this syndrome??
Angela

Hey Steve
Keep us updated on how your paint chip therapy goes.
Courtney

I've been diagnosed with PA for nine years now. I'm a journalist who is coping
by the grace of God and with the help of methotrexate and a bunch of other
stuff I may share later. I'm relatively pleased with
where I'm at now but am looking for a rheumatologist in the area, preferably
within easy Metro access from where I work, which is between the Farragut West
and Farragut North stops. I'm looking for someone who
will work with me as a partner instead of just reading my chart and dictating to
me so he or she can rush to the next appointment. Since I'll be out of meds in a
few weeks, it's rather urgent.
Anyone out there live in my area? Any suggestions?
I'm looking forward to being on this list with other people suffering with PA .
I don't know anyone with PA and no one seems to understand this "invisible"
disease, not even my family.

the ONElist web site, at www.onelist.com, and select the User Center link from
the menu bar on the left. You may change from digest

Can anything be done for swollen glands? The local doc isn't concerned about
them but they have been swollen for years. I'm tired of them being swollen. Is
it from the PA or just from the Sjogren's Syndrome? At one time I thought maybe
it was the drainage from the psoriasis like the clear fluid from a blister and
draining down from the scalp into the neck glands. Boy, am I really stretching
here to give myself an explanation.
Anyone got any ideas?
Pat B

Hello everyone,
Well I took my first dose of MTX Sunday night and woke up Monday morning with a
mouth sore. Tuesday morning they were covering the whole roof of my mouth. I
called my RA and he prescribed me some folic acid, 1mg a day. The sores seem to
be going away already. I'm sure I wasn't getting enough folic acid to begin
with, after all I've always thought veggies were bad for you (just kidding).
I'm looking forward to seeing some results in the next six weeks or so.
Here in Southwestern Ohio we've been experiencing a drought all summer, but the
last two days its been a steady rain. As much as we need the rain it's made my
PA get very bad. I was almost walking without a limp there for awhile. Oh well
it's Ohio the weather will change soon.
Bye for now
Shayne

I know you asked for the bad news but I thought I'd
chime in too. I've been on moderate doses(started at
10 and worked my way up to current dose of 17.5 mgs a
week) for about 2 yrs now with pratically no side
effects. Meds have usually not effected my stomach and
have had no nausea from MTX. Recently have had some
fatigue but don't know if that is from meds, disease,
hot weather, chasing 3 yr old daughter, or some
combination of all. Just writhing to say you shouldn't
anticipate side effects. Most people don't get all,
many get none. Good Luck.
Courtney
===
Courtney C McCullough
thelockhorns@...

Annette -
Right now I am taking 4 Lortab 7.5/500 a day. Sometimes I take one more and
some days I take one less. He prescribes me 4 a day. At one time I went to
a Dr. who prescribed me 8 per day! At the time I didn't think it was enough.
But it scared me when a friend of mine had to go into Detox because of
Hydrocodone. I made myself go down to 4 a day. My new Dr. brought me down
to 3. Then 2 weeks ago brought me back up to 4 because I had to get off
Arthrotec for a while. I might have to have a liver biopsy... errrr.....
I came out and told my Dr., look, I have to work to get money to treat my
illness. To accomplish this I need pain meds. So, for you to remain my Dr.
and get paid I need some help! He was more than willing. He is doing
research on PA and writing a bunch of articles concerning the condition. So
I think I'm kinda his little "test" subject. I don't mind though. Whatever
works.
He is really a great Dr. I think another reason I did not have a problem
getting 4 a day is because I was so depressed because of the pain. I mean
one day... BAM... I have PA and cannot walk! Takes a lot out of a person. I
was 26, so it really effected my self esteem.
I still think I need more a day though. I have been taking tons of Tylenol
Arthritis also. But he took me off of that also because of the liver
problems. Aleve also helps me. Aspirin tears my stomach up and Advil raises
my blood pressure.
This morning I am in severe pain, I think because of my salt water taffy
splurge yesterday! My jaw is very bitter!
Danielle

Annette -
Only 1 pain med a day?? I thought I lacking in that department. I get 4 a
day. Of course at one time I was getting 8 per day! You poor thing. I
really don't think I could cope with just one per day!
Have you tried taking Tylenol arthritis? It's no substitute for pain meds,
but it helps me until I am able to take the next one.
Danielle

In response to Lee Ann, If you've only been on MTX for 4 weeks and it is truly
working for you, the best is yet to come.
I've been taking MTX for about 5 years and the thought of not taking it scares
me to death. I can still remember the joy I felt to be able to get up from my
desk and take off down the hall at a pace faster then a crawl. I wish you the
best of luck. But, please be faithful with your lab tests and follow-up visits
to your Doc. I have to travel 250 miles to my Doc, so I don't see him as often
as he would like, but he keeps good tabs on me through me labs. Again, Good
luck,
Becky
Elko, NV
From: "Lee Ann Walter" <SAWalter@...
Subject: RE: I'm New Here
"Finally my Doctor saw that I truly was
hurting and needed help beyond diet and exercise. I took my 4th
dose of MTX today. I am feeling ok. It does upset my stomach
but the relief I have gotten in my hip and leg is WONDERFUL. I
am not in constant pain. My husband was beginning to wonder if I
hated everyone around here before I started getting relief. My
pain is relived and my spirit and attitude are getting back to my
normal self. It is difficult enough having to deal with this
disease. I think we all need to support each other in the
choices we have made for ourselves in finding relief from pain."

Why, I hear there was a guy who kilt himself to prove
that the only magic bullet was a bullet! Amazing!
Drugs are not a magic bullet, but neither are herbs,
meditation, positive thinking, wishful thinking, or
wiccan spells. I have to qualms about taking
Methotrexate and Enbrel because I know that without
them I would not be going to work every day. And I
like going to work every day. Of course I do not
leave it at that -- I am embarking on an aquatic-based
exercise program and meditate as well (people can
write me individually for reference to what I feel is
a good book on the subject of meditation and pain).
And I am tired of people who tell me that drugs alone
are the answer to my problems. But I am also tired of
people who tell me the only answers preclude
medication. For me, and I think for the vast majority
of people, the answer to arthritis is a wholistic
approach which combines AMA-type medication with a
program of physical and spiritual enlightenment.
Robert, NJ Highlands
raharris@...

I have learned to plot along at a slow to slower crawl, in order to maintain
quality of living. I would welcome responses from those who share my
concerns, and also are learning how to adjust to life's obstacles without
serious medications.
Marie
Marie, if I plotted along at a slow crawl, my 3 year old would run right over
me, and I would miss more of his life than I could stand! Methotrexate
allows me to walk without a limp, maybe even walk at all, who knows for sure.
The drug *maintains* my quality of living. Different people have different
circumstances, and therefore, make different decisions. You have found what
is right for you, and for that I'm glad.
Patty

Hi Gang
I've mentioned before that I'm due for knuckle
replacement surgery in the spring. Well now my mother
is going to be coming for the month of Nov. and it
looks like I may be having it then. I've basically
been scheduling this around her so I'd have maximum
help with my 3 yr old daughter. Here's the question, I
don't have a lot of pain in my hand but do suffer from
very limited mobility. My RD says pain relief should
be the primary motivator for this surgery. As a
hobbiest musician the thought of increased mobility is
probably more important to me than it would be to some
others. The hand surgeon says he can help a lot but of
course he's a surgeon and will say this. Actually
here's the question, anyone have this surgery, all
four knuckles where the fingers meet the hand? What
can I expect, how much more mobility, what kind of
physical therapy and recovery time? Any advice would
be greatly appreciated.
Thanks
Courtney
===
Courtney C McCullough
thelockhorns@...

LaRita -
I guess I never really understood how good I really do have it. I presently
do not have back problems. I'm very thankfull for that. After reading
everyone's posts regarding back pains associated with PA I pray I will never
have it. Although, I'm sure it's pretty likely.
What kind of gloves were you speaking of? I think I have seen ads in
Arthritis Today.
Danielle

Pat B -
I just read your posting. I guess now I know why my Dr. refused to five the
cort. shot in my jaw, yet he strongly suggested me getting from another Dr.
I did not realize there would be a chance of paralysis.
Has anyone out there had a shot in their jaw?
I have not had a MRI. I have been complaining about the pain, but my Dr.
sent me to an Oral Surgeon. He sent me to a Dentist to get a hard splint to
wear. If that didn't work he said I might have to have surgery. I heard
this surgery would be extremely painful.
My insurance will not pay for a hard splint. Of course my insurance is now
going bankrupt! LOVELY! Thank GOD I have my husbands insurance also!
Danielle

Patty -
When I was on MTX I could only take it for a little while. I had severe
mouth sores, stomach problems, you name it! I was also on several other meds
like Folic Acid which was suppose to help the side effects. Nothing helped!
I also had the same kind of reaction to Imuran.
Right now I'm on Enbrel. I have been since January. I LOVE IT! It's
excellent for PA. At least for me. My Dr. managed to diagnos me with a
little RA. That's how my insurance is paying for it. Everyone knows, it's
practically not affordable for normal income people!
Danielle

Hi Annette!
I too have had problems with my Dr. giving me pain medication. He just
increased my dosage by one, but he added pred. twice a day. Makes me wonder
because my family has a HUGE history of diabetes. I also have high blood
pressure. I don't see why he doesn't just increase the pain medication. I
would rather be taking more of those pills than risking getting diabetes.
Danielle