For those who have Psoriatic Arthritis

vicki, thanks for the insight. we all do have different symptoms. did you ever
ask yourself if it is the right diagnosis. I go back to all the wasted trips to
my family dr and wonder why he never once mentioned pa. The rd dr mentioned it
in the first 5 minutes of the visit. for a year i thought i was losing my mind
or had some fatal disease and the longer it took for them to find it, i thought
my time would run out. it is wonderful to finally talk to people that know what
i
am talking about, unlike my family who have NEVER heard of such a thing. i find
myself avoiding them when the pain is bad, because i am just plain tired of
feeling bad and complaining all the time. my husband has read all the
phamplets,
but since i look "normal" i think it is hard for him to comprehend. thanks
again - jayne

Hi Jayne,
It was my regular MD that finally make the diagnosis for me. It
took me losing a lot of hair before he decided to check things
out. But I have to be honest and say that I did not complain
enough. I just dealt with the pain and lack of sleep. He did a
biopsy of the "eczema" I have had since I was 11. It came back
psoriasis. I was losing my hair, having so much pain and fatigue
that I can hardly function, loss of sleep, swelling and so on....
He thought I had RA or Lupus. He did some blood tests and ruled
out RA and Lupus. I also run a low grade fever much of the time.
diag.....?????<<<
I know. I was doing that too, until the MTX started giving me
some relief. I think it is denial. I went so long knowing
something was wrong and continually being told it was all in my
mind. It is hard to fully accept I guess.
back sometimes take your breath away.<<
The pain in my lower back is a constant deep painful ache. The
pain in my leg, hips, shoulders, knees and hands(especially) are
sharp and knife like. My whole body aches actually. My lower
back pain is extremely bad during my period. I also have a lot
of digestive problems - bad cramping and pain - I often have to
run for the bathroom after a meal. I still struggle with my
weight even though it all seems to goes straight through me at
times. Then I get a restless leg thing. I think that has
something to do with my lower back.
When I was 16 I was given cortisone shots in my lower back
because I had two crystallized tumors. I am not sure if that was
related to PA.
couldn't even walk (and if someone ever mentions the possibility
of kidney
stones again, I think I'll lose it). Nice talking to
ya....Jayne<<<<
I understand that! My worst time is morning. I stand up and
think "ok legs, lets go!" It takes a good part of the morning
for me to feel half way like doing something. So I sit with the
kids and watch their programs with them. I feel like a flop most
of the time.
Lee Ann Walter
Wife of Steve;
Mom to: Stephanie 15; Krystle 14;
Caleb 2; Katie 2; Joshua 10 mo.

jayne, you are not wierd at all. this disease affects all of us differently
and at different times. when i first got pa, i had lots of problems with my
left knee. now it's moved on to my hands and while my hands are really
painful right now, my knee is doing fine. the disease just does that. don't
worry that your's isn't exactly like someone else's. none of us are just
alike. some of us have symptoms in common with someone else and yet we can
have other experiences in common with someone else all together. i've
learned alot about this disease in the past few weeks here. it just feels so
good to talk to others that know what it is and can empathize with what's
going on and can lend support and share experiences so that we don't feel so
alone with this.
vicki

I just hit the reply button, don't know if that is right, but here
goes...thanks for saying I am not weird...the pain wakes me up almost
everynight, and yes, I too end up in the chair. (husband loves that). I
have tried alot of the anti-inflamatories...with no luck, although, recently
I have been taking Naproxen, 3 times a day with tylenol in between. Takes
the edge off. I have an appointment on 9/2., and I am sure he will try
again to get me to take Pred...just so nervous, feel like a junky already.
How did the RD come to diagnose you with this???? Maybe it's denial, but I
keep wondering if he made the right diag.....?????Does the pain in you lower
back sometimes take your breath away. There have been nights, where I just
couldn't even walk (and if someone ever mentions the possibility of kidney
stones again, I think I'll lose it). Nice talking to ya....Jayne

Hi Jayne,
You are not weird at all! Most of my pain is in my lower back,
hips and legs - then my neck, hands knees, shoulders, elbows, jaw
and feet. In that order. I have had a terrible time sleeping at
night. The pain in my lower back and neck wake me up. I
sometimes HAVE to get up out of bed so and go to my chair. I am
36 and have felt if my lower back, leg and hip pain continue to
get worse I would be in a wheel chair in a few years. It is not
a good feeling. I was just diagnosed last month. I have had
Psoriasis for 23 years and signs of Pa for the past 10. I have
gone for quite some time undiagnosed too. The Drs look at me and
see a healthy still fairly young person and ignored my
complaints - until my hair started to fall out! I has been
frustrating. Have you been started on a medication yet? I am on
MTX and have noticed some mild relief from the lower back pain.
I have had a lot of sciatica problems. It have improved. I will
take my 4th dose of MTX Sunday night. I hope I continue to
improve.
Lee Ann Walter
Wife of Steve;
Mom to: Stephanie 15; Krystle 14;
Caleb 2; Katie 2; Joshua 10 mo.

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One more thing..I promise this is it!!!
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in all physical, emotional and biological instances, I think.</html

Message From: Frog1945@... Date: Wed, Aug 18, 1999, 7:48pm
(CDT+1) To: PBias@... Subject: Re: pred
In a message dated 08/18/1999 12:04:19 PM Eastern Daylight Time,
PBias@... writes:
<<
Annette,
Why didn't he put you on pain meds instead of the pred? W/ the
history of diabetes I would think he would try the pain meds first. It
seems an either/or pred versus pain meds. The pred is cheaper but you
said you had insurance so that should help.
I wondered the same thing. My mama was seriously diabetic and I saw
amputations..the works, so I am afraid to risk taking the Prednisone. I
went to the doctor Monday to tell him I was in a lot of pain and thought
he might offer more hydrocodone...but he offered the Pred instead. He
already prescribes me one hydrocodone a day and I suppose he feels it is
enough. I take it when I get up and it helps ...but when it wears off
the rest of the day is spent just thinking about how much I hurt and
what I can do about it.
I am told by many that doctors are edgy about prescribing narcotics
because they have to be held accountable. They are only allowed to
prescribe so much before it raises a flag and when they give it to you
then they have to cut back somewhere else. I feel that I am paying
everyday for someone elses abuse...and it is not fair. I guess I have no
choice but to start the Pred and hope for the best.
Pat, thanks for the concern...will keep you posted..:)
Is anyone else given less pain medication than they need? I would be
interested to know.
Annette :)

I have had PA for about 6 years and my mother was dx and my mother of 57
at that time, was dx a year later. My mother has a tremendous anxiety
about anything to do with medical treatment, including pills, docs and
medical facilities. As my condition has been stabile for about 3 years
now, hers seems to be only getting worse as time goes on. I know that
PA can be a frightening condition and can lead to permanent disability
(I prefer the term alternatively abled!). In my second year of dealing
with it I in fact stopped dealing with it and slipped into a deep
depression which found me contemplating suicide. Thank God I got out of
that rut. Perhaps I will share that story someday with you people.
My mother "cripples" around, is always dropping things, fell last week
and beat up her face and knees, has difficulty getting in and out of the
car, hobbles up and down the stairs, has very swollen finger joints and
ankle joints...and refuses to do anything about it. She says she is in
no pain. Well, I know this may very well be the case, but I keep
informing her that the damage is being done right before her own eyes.
She is now 63 and says that she it too old to worry about it. I told
her that she should consider me in the picture, as I am the prime
candidate to care for her when she is unable to care for herself and I
may not be able to care as well as I would like to, as my PA may worsen
over time. The later she is immobile the better. This gets me nowhere,
but my mother is a very stubborn woman!!! I am upset that her doctor
has never offered her treatment (so she says) and does not address the
obviously physical symptoms. I know that all I can do is keep talking
to her about it and maybe someday she will come 'round to my way of
thinking, but I really doubt it, actually.
I wonder if there is anyone else out there with a loved one who refuses
treatment for their PA? What do you say? How do you deal with it? Oh
yes, she also has terrible patches of psoriasis on her back and elbows.
And I know she has problems with a dry scalp and overall dry skin.
And thanks for giving me a place to share and talk about this. :-)
Happy Day to all!
Janet

In a message dated 08/17/1999 4:03:29 PM Eastern Daylight Time,
SAWalter@... writes:
<< . On one hand I have hope for some relief, but on the
other some
of the side effects are pretty scary.
I am going through the same thing with starting Prednisone. I was prescribed
Pred for the first time yesterday, and I have hesitated to go ahead and take
for fear of the consequences.
I take MTX and Enbrel and the doctor added a 2-week course of the Pred....40
mg daily first week...20 the second.
Could anyone please tell me your experience with Prednisone?
Annette :)

I keep reading all the wonderful things that MTX has done for so
many of you and cannot help wondering if there are any others out
there that were unable to take MTX. I tried and after two weeks
had to discontinue as my throat was swelling shut and I was
unable to swallow. Anyone else had this reaction? What did your
RA do for you after the MTX did not work?
Just wondering, thanks!
Linda

Before I alarm anyone with the subject line, let me first say that I am
fully aware that getting pregnant while on MTX is a no-no. The thing
that I do want to talk about is my arthritis and other afflictions.
Apart from having PA, I also have PCOD (polycystic ovarian disease),
which among other things has caused me to be infertile, and I also have
type 2 diabetes. Less serious, but obviously still a concern, is the
panic and anxiety I suffer from. Okay, what am I trying to say or ask
here? IS THERE ANYONE OUT THERE WHO HAS THE SAME ISSUES AS I DO????? I
want to try to get pregnant but that may require at least a year, just
to create a pregnable environment in my body. And before I can even
consider trying, I have to find a more "friendly" medication for the
PA. I am also being treated for my diabetes with medication. So, as
you can see, nothing is ever easy. I keep reminding myself, and I
really do believe it, that God has something up his sleeve for me and I
just have to be patient. I just don't where to start. I am being
treated by 3 different doctors for the 3 different afflictions and
obviously this can get screwy, as the doctors have to collaborate with
one another. So far, there has not been too much problem, but what
happens when I begin my quest? Oh yeah, another complicating factor is
that my husband lives and works overseas 80% of the time....hey, we
don't knock it! The living arrangement is great for us. At first it
was difficult, but we have really grown into it. I digress.
I have so many issues to deal with all at the one time, and I think it
is the stacking of the issues which gets me down, not the fact that I
have the multiple problems....understand? I don't let myself get down
very much. I have been there and done that and don't intend on doing it
again. I just want someone to talk to sometimes.
I did alot for the Arthritis Society in Canada. I started a branch and
was president of it for over a year and I am an ASMP leader, altho I
have not done a course in about 2 years. Yeah, maybe I should do that
again.
Anyway, nice reading the postings. So nice to read e-mails with words
and phrases that I can relate to.
Janet

How is your PA? Is the MTX working? Kevin******
Hi, Kevin.
I'm doing pretty well, actually! I've been taking 10mg MTX for about a month
now. I was diagnosed in April and started MTX in late May. I don't have
many what I would call severe side effects, only the little memory issue, aka
goofiness, and a little fatigue the day after I take it. I had a little
stomach upset with it early on, but that seems to have passed. I also taken
Lodine (800mg/day) and folic acid (1mg/day).
I'm figuring my dosage may be adjusted at my next visit to my RD, as I feel
twinges of PA on Sundays, particularly if I don't slow down. For a couple
weeks after my dosage was increased the first time I sailed through from week
to week completely pain-free, so this is a little change. Right now the PA
is affecting my right knee, right hip and right hand. I had some tendinitis
in my right shoulder, but it hasn't bothered me lately.
I'll stop because this is probably more than you really wanted to know! :-)
Patty

Hi...... just a FYI
My knuckles get a bruise look to them sometimes......... but stays long than
a bruise does

I understand that mtx absorbs folic acid in our systems and that is the main
reason why folic acid should be taken with mtx. I seem to recall reading that
skipping the folic acid on the day you take mtx is a measure to avoid over
absorption. I could be wrong here, but it seems to ring a bell with me. I am
pretty sure that mtx absorbs fa. If anyone else got the answer, let us know! In
the meantime I have an appointment with my rh on wednesday, and I will ask him
then.
I have been extremely lucky to not experience any of the side effects of mtx in
the 3 1/2 years I have been taking it. Monthly blood tests reveal normal liver
functioning. But then, I am known to not experience side effects to alot of
drugs. I guess that makes me easier to treat, too!
Janet

Has having PA kept any of you from achieving most of your life's
dreams. I mean those dreams that are within reason. One of my
dreams is to be a millionaire but that seems unlikely! I would
have loved to be a Dr. but that is even more unlikely than the
millionaire! But I would someday like to go to school, something
in the medical field. Nursing has always been a dream of mine.
But I am not sure if I could keep up the pace. Of course I need
to wait a few years because my babies are very young yet. I am
just wondering with having a family of 5 children and two that
are disabled and the PA. I am just wondering if I need to set my
sights in a different direction. I would like to be a beautician
but that would be very hard on the joints. Any thoughts? What
have your experiences been?
Lee Ann Walter
Wife of Steve;
Mom to: Stephanie 15; Krystle 14;
Caleb 2; Katie 2; Joshua 10 mo.
Home Page:
http://www.homestead.com/walter7/index.html

I even went on a roller coaster...
Reminds me of last summer when we went to the state
fair and I rode the kiddie coaster with my 3 yr old
daughter. Not very scary except for when I tried to
squeeze my stiff legs out of the ride when it was
over. For a second I thought I would just have to ride
it all day<G
Courtney
===
Courtney C McCullough
thelockhorns@...

Long but worth the read: A response on a messageboard at
ww.americasdoctor.com
Message From: Arthritis_Mailer@... Date: Sat, Aug 14,
1999, 10:00pm (CDT+1) To: pbias@... Subject: Re: Pain Legislation
New message has been posted in Arthritis
Forum: Arthritis
Thread: Pain Legislation
Author: rev
Subject: Re Pain Article
URL:
http://www.americasdoctor.com/forums/Index.cfm?CFApp=22&Message_ID=2620
Hi Pat - thanks for posting and reading the article. Yes, I agree it is
a great article and hopefully one day ALL people in pain will have
adequate pain care. Pat, you are very fortunate to have a physician that
does prescribe for you because too many people in pain DO NOT receive
adequate pain meds. for some of the reasons that I will describe in what
follows.
About the comment from your doctor: "One point the doctor made is not to
have a large amounts of drugs in the house so you don't get robbed. I
never thought of it that way." That is an excellent point and as an
advocate I hear it at least once a week: "Someone stole my meds.!" It is
very important to store your schedule II drugs in a safe place no matter
how well you think you know family, friends, or others. However, the
real reason why those on schedule II drugs need to get a new RX every
month is for your state Attorney Generals office and the Drug
Enforcement Agency (DEA)to keep control of how much each physician
prescribes each month. In most states physicians are allowed a certain
amount of schedule II scripts and if they need more they need to file a
special request form and send it to their Attorney Generals office.
These controls were put in place about 1960 and strengthened in the '80s
because Law Enforcement desired more control over physicians - a very
unfortunate ! turn of events because it made Dr.'s afraid and kept
millions of individuals in needless pain. During the Regan era it became
popular to "Just Say No To Drugs" but it was never intended to include
pain patients. However, Dr.'s, rightfully fearing for their livelihood
and not knowing how much is too much, started telling patients "to learn
to live with pain". Also just about anyone in the medical profession
adapted the same mantra and soon any pain patient in need of opiates was
equaled to an addict.
Anyone interested in learning more about why pain patients have to have

This is completely natural - you may feel wiped out, exhausted and unable to
reason well - kind of goofy. It really zaps your strength. After all it is
a strong immunosupressants in the antimetabolite family.
Sadly, after adding 25 mg IM in to the Arava I have been taking for several
months. After only three shots-my blood counts bottomed out. It can cause
severe bone marrow suppression in some people after a while, and I guess my
body did not forget this, since it is what happened
after several years of taking the highest dose - 50 mg a week. My doc
thought it was worth a shot to try the combo.
I ended up vomiting for three days, feeling beyond exhausted with narcoleptic
episodes driving, etc. A complete blood count revealed that my
Hematocrit dropped from 40 to 32 and my Hemoglobin from 11.4 to 10.2-within one
week! (after the third shot). In addition, My white count went dangerously
low. A component of the white cells is called Neutrophils and apparently you
need at least 1000 of them minimal to be safe from severe infections and I
had dropped to 700. The good news is I went from 700 to 1000, in two days
and now up to 1500 in five days. Quite hairy there for a time.
I am phoning for an appt. with the ol' rheumy this week, since I had been out
of town while all this happened. ((I got a panicky call from the nurse at the
docs regarding my last "routine" monthly test.
I am telling you all my tale of woe, so that those of us who hate those
monthly blood draws will remember how important they are!!!!!!
Michelle

The first couple of times I took the MTX I sort of sat down and got into
looking for symptoms of side effects. Sure enough, I had some. Yep, I felt a
little goofy - but it was a pretty goofy thing to do anyway.
I don't know that tolerance is the right word - perhaps an appreciation is
what I have gained. I now take the MTX just before bed - most of the symptoms
are gone when I get up. 15 mg/week, a fairly low dose.
happy trails - Rob Glover
<< From: "Lee Ann Walter" <SAWalter@...
Subject: MTX
Hello,
We are back from a short vacation. I took my second dose of MTX
Monday. Does it make any of the rest of you feel kind of goofy?
It made my stomach hurt of course but my eyes and my thinking
seems to be affected a bit too. I felt crummy for about 24
hours.
I am only taking 7.5 mg once a week. Doyou build up a tolerance
for it after a while?
Lee Ann

Hello,
We are back from a short vacation. I took my second dose of MTX
Monday. Does it make any of the rest of you feel kind of goofy?
It made my stomach hurt of course but my eyes and my thinking
seems to be affected a bit too. I felt crummy for about 24
hours.
I am only taking 7.5 mg once a week. Doyou build up a tolerance
for it after a while?
Lee Ann

she starts with an airpocket feeling in her elbow unable to straighten it,
followed by swelling and pain. After two weeks to the family Doc and
several tests, because of being 18 all being sexually transmitted, they
think, everything comes up nego.
the library and got in the medical journals because the Dermotologist had
no clue, I found what P was and also read that 10 percent of P sufferers
developed PA. Because the Doc's are not familiar with P and/or PA, and
Alex had no P outbreak at this time, the info was dismissed. Until all
tests came back nego and we had to visit the specialists.
share of indiginities at her young age. As it turns out the knee was a
mess, and drained, and cultured and the ankle and so on. It has been
determined that it is PA.
an exercise, vitamin person with very little medication in my life and I
find it hard to accept that there is not a natural or better way to deal
with this.

Does anyone have any advice/information on the Dead Sea Therapy in
either Israel or Jordan? I'm thinking about going in Sep/Oct; as this
vacation will represent a substantial financial outlay I'm particularly
interested in ways of saving money without having to really "rough" it.
For example are there reasonable hostels close by to the treatment
centres, that will offer a cheaper alternative to four and five star
hotels? Thanks folks.
Viji

Does anyone else have pain levles that bring on nausea?? In the past few
days my left elbow has decided to join the wrist and shoulder on that side
in aching. My pain meds wern't touching it, nor has the anti-nausea helped
that either. I decided to try a bit of tensor bandage around the elbow to
see if that would help and in the process of getting the metal holder in
place I gouged my thumb a good one.. the pain meds are doing something
because other than the initial stab the thumb didn't/doesn't hurt at all.
I hate it when the pain screams but there is no visable on the outside
indication of there being anything wrong. The elbow is hurting on the
inside and hurts most if the arm is bent.
I get confused when docs start saying that I have a low pain threshold.
I am forever getting minor injuries like scratches and bruises becaause my
unstable ankles make me wobbly on my feet and my balance goes off as
well..and other than an "oh darn..owy" at the time of injury I don't
register any pain and will forget about the injury until I see it. The
same goes for burnt fingers and splatters while cooking. If the pain
levels are enough to deny rest and cause or come with nausea and/or sweats
isn't it a bit off to tell the person that they just have a low pain
threshold and to learn to live with it??
Phyllis
........................................................................
mailto:wo286@... http://www.victoria.tc.ca/~wo286/

Dear Kathy,
I was very interested to read about your success with the various Usana
products. I looked up their web site and was reasonably impressed. what
you say about supporting the immune system makes sense to me. Can you
clarify which products helped ameliorate the arthritic symptoms? Has it
alleviated your p in any way? I've been in contact with a distributor
here in the UK and wanted to be sure of what to order. Many thanks.
Viji.

Hi Leann,
Yes, I have restless legs too, although not all the times. Actually it is quite
infrequent, but when it does happen, it is quite uncomfortable and frustrating.
It's kind of a joke arounsd here now. When this happenes, I simply say " My legs
are telling me it's time for bed" and off I go. I don't even try to stay up
anymore. When I get to bed and lay down, it usually subsides. I read or watch TV
in my room, sometimes with the kids, until I'm tired.
Angela

Does anyone have the Psoriasis in the tail bone area? I have had
it back there for a very long time. It has started back up in
that area. It used to drive me nuts in gym class - I would get
hot and sweaty and start to itch back there! Could not scratch
very effectively in front of other kids. I used to HATE gym and
swimming. I was the only one with this horrible and gross
looking rash on my body. To top it off I was much more well
endowed than the other girls. Needless to say I was teased a
lot. I always managed to shower after all had left or skip it
all together. School was humiliating.
Lee Ann Walter
Wife of Steve;
Mom to: Stephanie 15; Krystle 14;
Caleb 2; Katie 2; Joshua 10 mo.

Has anyone tried MSM for the arthritis? I have seen a few encouraging
articles on it. It is a sulfur compound....and I was reading today in a
"nutritional healing" book that sulfur might also help with psoriasis (in
which I am having a small flareup under my arm today). Anyone tried it yet?
Joy

Does any one experience restless legs? Mine are ok until about 8
in the evening. I start getting tired and my legs drive me nuts!
Sometimes I just give up and go to bed because it is so
uncomfortable. They feel like they are going to get up and walk
away.
Lee Ann

Does the MTX relieve the pain enough to get back to a more normal
life? We went out looking for houses last night. We really are
not in the best position financially to move yet. I thought
maybe we should give the medication a chance to work. Does it
help that much. I will still have the stairways to deal with.
Lee Ann

Rob,
What a great message and all the info in one spot! Thanks for all you've
done.
Lee Ann,
I too was diagnosed only a year and a half ago (I am 36 too) and for at
lease a year I was in denial. I would look up info on the net and get so
depressed it was awful. All I could think is (this will never go away,
will never be completely well again only worse). How scarey this was,
for the first time in my life I was not in control. Yikes!!!! Then a
friend of mine gave me a copy of Arthritis Today. Again TOTAL DEPRESSION
AND DENIAL. Finally after 6 months I subcribed to it, looked at the
cover and threw it away. Only recently have I been able to look at the
articles without feeling at a total loss.
Only here have I been able to realize how lucky I am. This list is the
best thing out there, not to mention the subcribers are wonderful,
altrustic and helpful.
Best of luck. We're all here to help and learn.

Anglea,
I've heard of MTX and Enbrel at the same time and also MTX and
Cyclosprin (sp) at the same time but I thought you either took MTX OR
gold shots. You're the first I know of that is taking MTX and gold at
the same time. I am in Limbo waiting to see if Enbrel gets approved. If
it isn't I go on Gold which goes after the kidneys. My liver is back to
normal but the doc doesn't want me to stress it by go back on the MTX.

Hi everyone,
Sorry I've not been able to write for a while. It has been crazy at the
office and my office system has my e-mail. One thing I wanted to mention
that I haven't heard any mention as of yet on the subject of Psoriasis
and that is treatment by use of antibiotics.
I was having a major problem awhile back on my scalp (to the point of
infection) because it itched so bad and I scratched which only makes it
worse. Well, lets just say I was a regular at the dermatologist.
He put me on 500 mg Cephalexin 3X daily. And do you know what? Within 1
week there was a marked improvement. Within 2 weeks my patches were
virtually GONE!!!! Even the Rheumy had not heard of that treatment. I'm
telling you it's awesome, so whenever it flares up really bad you've
gotta check it out.
This was all done prior to my coming down with PA. Now for me since I've
been on a "drug cocktail" from the Rheumy my scalp had been kept down to
a dull roar. Perhaps the MX works for me but certainly nothing has come
close to the Cephalexin. Has anyone else had the same luck? Hope this
helps anyone else out there.
Dez

Regarding the survey--isn't there a function on the PA Onelist member thing that
allows us to do surveys? Or did you just want a wider scope so the web page
would be better? Just curious.
Lee Ann, wow--that sure is a lot to contend with. Good luck!
Later all,
Kim

his does make me curious if "it" happened to others all of a sudden, or was
the onset of PA very slow.
My right knee started aching one day out of nowhere. It stuck to my right
knee, which got more and more stiff and painful, for several months, and then
started spreading to my right hip, shoulder and hand. Right now, only my
right side is affected.
Patty

Since we are all kind of comparing things and looking for similarities. I
was wondering if we should make some form or questioner then put it all on a
spread sheet???? I don't want to over step my bounds as I am new here on this
list.... but what do you all think?

I know for a fact that mine was sudden. I always describe my pain
starting as "being run over by a truck". One morning I just could not
get out of bed. I scared my husband because I yelled for him to help me
out of bed cause I could not do it by myself. Also, as I look back, I
do know that something was amiss cause I became so tired, slept all the
time (or for long periods of time) and just lost all energy to do
anything. This was my warning and I just thought I was doing too much.
I finally went to see a Dr. after I couldn't lift my legs to get in and
out of the car or to lift my leg to brake or accelerate the car. I was
really fortunate that my GP knew the symptoms and sent me straight to a
Rheumy. That was 11 years ago when I was 38 years old.
Angera

Hi all --
I have let the webpage slide for about two weeks
because I have been either too busy or too sick to do
any work on it. But I added some things today and I
have my monthly report --
1. As 0f 99.02.08 the PA page has entertained
425 visitors, or just over a hundred "hits" a week.
2. I added a "PA Chat Session" page and made it the
third link on the navigation bar. It lists the PA and
arthritis chats that I know about. Anyone who knows
of other chats, including psoriasis, arthritis, and
any related health condition that occurs to you,
please let me know! Ditto webpages you don't find in
the resources section.
3. I changed the case histories page around,
subdividing it into three alphabetically arranged
pages. So far I have only three case histories
posted:
Angera, Randi66 (picture only, I have to find her
intro), and Steve. I have departed from procedure
here in posting Angera and Steve before either had a
chance to look at it. So you two, please look them
over and tell me if you want anything changed or
removed. From now on I hope to be able to ask people
before I post a history.
4. I have several more recipes to post, including
some contributed by listmembers, and will get to them
when I can -- hopefully this week.
I am very busy this week -- have three work days and
two research days at archives in NY. Still, if you
see any problems or mistakes, or want to offer
structural or artistic feedback, please do not
hesitate to write me.
Thanks,
===
Robert, NJ Highlands
raharris@...

In a message dated 7/29/99 5:18:33 AM Central Daylight Time,
PsoriaticArthritis@onelist.com writes:
Amy,
I am very sorry to hear that you're having this pain and also that it may be
PA related. I just started having lots of hip pain and sciatica stuff about
two months ago and am desperately trying to exercise a little but with no
good results so far (water exercises and yoga (ouch!))
I find it extremely demoralizing to have pain in my butt. How about you? <g
It does sound like yours is worse than mine, though....mine tends to be worse
when I sit and feels best when I walk. I'm alternating between kneeling in
front of the computer and leaning over the back of the chair to write this,
and you know those ain't comfortable positions.
I agree with the other person who said it, it sounds like you're in order for
a course of pain meds, especially if you're depressed. Unremitting pain +
depression is a nasty downward spiral.
Good luck to you.
Dwanna

Michelle: Just wanted to run this by you to see if you have and idea
whats going on. My P has improved greatly-down to flat red area. Had
bad sore throat with blisters-Dr. started on amoxicillin 500mg. 3/day
July 6 for 10 days. Saw Dr. again July 23-sore throat with blisters.
Started on cefzil 250mg. 2/day. Could my medicine be causing and of it
or is it just something else? Thanks for any help you can give.
Brenda My sed rate done July 1st. is 54 and I'm having pain
from the arthritis.

<< My sed rate is fine - seems to be moving between 12 and 20, which she
explained was normal (so why do I hurt?)
I can't answer why you hurt, but my sed rate also never got above 20 to my
knowledge. I think a relatively low sed rate is a hallmark of PA -- people
with RA typically have much higher sed rates, as I understand. So I don't
think there is necessarily a one-to-one relationship between sed rate and
pain levels, at least not in my experience.
Patty

I have problems with my spots and patches burning and hurting, and have
found that I can get temporary relief from simple things that I have had
at hand. I admit I tried them out of sheer despairation when the pain was
keeping me from sleep or just plain driving me crazy. The one thing was
the bottle of Vicks vapo-rub that I keep beside my bed for use as a
decongestant. The other is the Ben-Gay I was rubbing on my hands and
wrists. Sure enough they both gave releif. The Ben-Gay also reduced the
inflamation of the spots themselves .. and upon closer inspection of the
label I noticed that methyl-salycilate was an ingedient. I have found that
any topical cream with salycilate works well in reducing spot inflamation
and itch along with pain. I have spots on my scalp, and two different
types on my body.. and I cannot remember the names of them right now.
I have tried Dovonex(tm) and I just can't tolerate the severe inflamation
it caused me. Coal tar does the same thing.. it makes the inflamed areas
worse until they ooze blood. No thanks. I have cortosone cream that I use
very sparingly.
Phyllis
........................................................................
mailto:wo286@... http://www.victoria.tc.ca/~wo286/

Hi
I'm 30 years old and developed psoriasis and PA two years ago. At the moment
I'm just taking NSAID's for my PA although my PA does seem to be gradually
worse. However, from what I've read in the archives it's not so bad as some
fellow sufferers. Hopefully, somebody maybe able answer the following question:
Is there a link between the development of PA and alcohol consumption, and
possibly liver function ?
Thanks.
Col

I have just been diagnoised with pa in the last 2 months. I have pain and
stiffness in both knees, no swelling. My ra has tried 3 different kinds of
nasids for the last 2 months, changing every 3 weeks. On wed. he put me on 15mg
of prednisone. How long does this med take to work? I thought this was the great
med that worked wonders on all kinds of pain and conditions! With the humidity
as bad as it has been I can hardly walk. Any info on the prednisone will greatly
be appreciated.
Jim

Vicki
I can understand your concerns but please remember,
I've had really no side effects from MTX. Maybe some
fatigue but then again I'm the primary caretaker of my
3 yr old daughter so some fatigue is to be expected.
MTX may help, it may not, but it's just one drug to
try there are many others. Just because it's a serious
one doesn't make it a choice of last resort. Everyone
reacts differently and don't forget new treatments are
coming along seemingly weekly. Try not to get too
worried about things that haven't even happened yet,
like side effects etc. Just keep your doctor (and
maybe us) informed of how you are doing.
Courtney
===
Courtney C McCullough
thelockhorns@...

Hi all,
After reading many of yesterdays discussions, I am thinking that we are all
saying that we choose our treatment plans depending on the quality of
life/functioning we expect and need to maintain at this point in our life.
For instance, I am in the phase of the PA where I get joint destruction
and severe pain without DMARDS and occasionally have flares between. The
cycling nature of my case gives me little to "count on" I never know when I
will be well -- planning is very difficult -- if not impossible. So, I
cherish each day that I can "do." My kids are 9, 11 and 13 and want to be
very active kids. We have no family whatever around. Besides their dad who
works 60 hours a week - I am it.
I have had to overcome my fear of the side effects of the DMARDs in order to
at least get some remissions a few months a year -- so I can be an active
mom. It would really break my heart to be forced to stop the DMARDs and face
my proven as inevitable rapid decline to living on morphine and being totally
housebound.
We are all at different stages of life I know. For me, I see that my kids
only have one childhood, and I don't want it to be a memory of mom in a
wheelchair or in bed all the time on drugs.....and so I have taken the leap
off the cliff called DMARDs and I HAVE NOT HIT BOTTOM YET !
Michelle

All --
I will be hosting a Chat on Psoriatic Arthritis at
drkoop.com at 8p (EST) tonight, Wednesday evening.
Please see the "official" drkoop.com blurb below.
You can log on at:
http://www.drkoop.com/community/chat/physical.asp
You may want to get there early so you can register.
It is free, of course. Michelle, the list founder,
will be joining me as co-host soon (actually, I am
joining her, but that is a long story!). The hour will
be themed around Psoriatic Arthritis, but all comers
and all arthritis-related topics are welcome. I have
been "chatting" about PA for some time now, and have
to say it really helps!
There is also a Thursday evening chat is at 8pm EST on
About.com . Please feel free to write me with
questions, etc.
Thanks,
Robert, NJ Highlands
raharris@...
(a.k.a. rah, raharris, dkc-robert)
http://www.drkoop.com/community/chat/physical.asp
8-9 p.m. EDT:
"Psoriatic Arthritis Support" (support group for
people who are living with psoriatic arthritis),
DKC-CTNative and DKC-Robert host in the
Health Central chat room.

I was first diagnosed as having psoriasis about four years ago. My
dermatologist told me that if I were prescribed medicine that was too strong
for my present condition, that the psoriasis would increase in severity
faster. I assumed he meant that rather than trying to completely eliminate
the skin condition, it was better to use medication that was just one step
ahead of the condition.
Four years later, my skin condition has "thankfully" only worsened
slightly. BUT, the arthritic nature of the disease has increased to the
degree where I am almost non-functional. My present condition has now
brought me to the point of maybe crossing the line from NSAIDS to DMARDS.
I've read on-line where MTX is also used for psoriais but not necessarily for
PA.
This brings me to my question. Is it possible that if I take MTX now
for the arthritic pain, will I eventually be surprised with a much more
severe skin condition in the future. Believe it or not, my arthritic
specialist at Baptist Hospital in Nashville has been pretty much useless.
If I could just ask one more question... Is there anyone on the list
that could recommend a good specialist or center in Nashville? Perhaps maybe
Vanderbilt University?
Thanks for your time,
Jim

Hi,
My name is Vicki Larson and I'm new to the list. I'm not sure how to post
a note so I hope I am doing this right.
I have been dealing with PA for a number of years now. I have been taking
sulfasalazine and salsolate for years. I've never been real happy with the
results but my Dr said he's limited in what he can give me because the other
anti inflammatory medications we've tried tend to cause problems with my
asthma. Recently, I have been having trouble with my hands. I try to ignore
it because my job calls for me to type most of the day but it is getting
depressing dealing with the pain.
The rheum discontinued the salsolate and put me on Prednizone a little over
a month ago due to a flare up. I started with 4 a day for a week, then 3 a
day for a week, 2 a day for a week and I'm down to one. I felt fabulous the
first 2 weeks. As I reached 2 a day, the pain began to return. Now I am
back to where I was and I'm frustrated and feeling defeated. I saw the Dr
last week and I was told to increase the sulfasalazine and continue on 1
prednizone a day for a month and if I'm not better, I am going to be put on
Mtx. I have been reading up on this medication and I'm not happy about this
at all. I've been putting it off for years - going on it - but I think I've
reached the end of my rope. Can I expect it to really do any good? Is
there any end to all of this inflammation and pain? Any hope? Any
information or help understanding this medication is greatly appreciated.
Thank you,
Vicki

Hi --
Reporting on the PA page, http://www.wpunj.edu/pa/
1. After being up about 10 days the page has had 150
hits -- or an average of 15 hits/day.
2. It has been advertised on this list, on About.com,
and on two usenet groups.
3. I have registered it on Alta Vista, Ask Jeeves,

Denise Ohr wrote in and commented on her nails. I too was
treated with strong meds for a nail fungus that never got
better...of course, I now know that it was PA!
I posted earlier about a product my new, and more knowledgeable
dermatologist recommended, and I think it is wonderful. You
might want to try this Denise as it really helped my nails a lot.
You can call and order it from Summers Laboratories at
1-800-533-skin or check out their website at www.summerslab.com
The product is called DermaNail Nail Conditioner. It takes at
least six to eight weeks to see any improvement, but it was
amazing how much better and healthier my nails are now. I also
had PA problems in my toenails and I use this product on them and
it has helped tremendously. You use it twice a day...it is just
a clear liquid...no mess at all. I usually order two at a time
for convenience.
If you have any questions, feel free to Email me privately. Good
luck!
Linda in Poulsbo, WA.

I have heard that syclosporin (called in UK unsure if
generic name or not) is another mtx type treatment
that has shown good results. There is still the need
for blood tests as this drug affects the kidneys.
===
Alex Frost
visit my home page at dragon1.i.am or i.am/dragon1

All --
I will be hosting a Chat on Psoriatic Arthritis at
drkoop.com at 8p (EST) Wednesday evenings, see blurb
below. You can log on at:
http://www.drkoop.com/community/chat/physical.asp
You may want to get there early so you can register.
It is free, of course. Michelle, the list founder,
will be joining me a co-host soon (actually, I am
joining her, but that is a long story!). The hour
will be themed around Psoriatic Arthritis, but all
comers and all arthritis-related topics are welcome.
I have been "chatting" about PA for some time now, and
have to say it really helps!
Soon I expect to be hosting a PA chat on About.com as
well, more info as it becomes available.
Please feel free to write me with questions, etc.
Thanks, Robert (a.k.a. raharris, dkc-robert)
raharris@...
http://www.drkoop.com/community/chat/physical.asp :
8-9 p.m. EDT: "Psoriatic Arthritis Support" (support
group for people who are living with psoriatic
arthritis), DKC-CTNative and DKC-Robert host in the
Health Central chat room.

Hi. I'm new. I posted one message from my mailer
a while ago and got a message back that the message I sent didn't go through.
Does everyone see this message OK?

My name is J. Mithra and I have had psoriasis for about 17 years now. Two
months back, I developed pain in my thumb joint and consulted a
rheumatologist. After a blood test, he says I do not have Psoriatic
Arthritis as yet but that he needed to observe my condition for a longer
period.
The NFP website says PA is a progressive degenerative disease. Does this
mean that after one develops PA, it is just a matter of time when it spreads
to many joints and one is crippled? Are there people with PA for 10 years
and more who are not in a wheelchair.
I am extremely worried. I would appreciate if other PAers could respond.
Thanks
J Mithra

Hi all --
I am slowly building the content of the PA page:
http://www.wpunj.edu/pa/
The most recent addition is nine "Quick and Healthy"
recipes from my files.
http://www.wpunj.edu/pa/tips.htm
My reasoning here is that we all have lots of things
to do on top of taking care of ourselves, and cooking
can sometimes be an onerous chore. Eating out is an
option sometimes, but most fast food is expensive,
tastes poorly, and is not good for us! So we have a
need to make good meals that are good for us, but
little time or energy to get very complicated -- Enter
the "quick and healthy" meal file.
I have lots more, and will get to them as I can. In
the meantime, please send in your favorite "Q&H"
recipes and I'll be happy to add them to the page.
As always, keep the feedback coming, to me privately
or to the list.
Robert Harris, raharris@...
Wayne, New Jersey

Yes, I've heard of putting olive oil on your scalp at night and wearing a
plastic cap. tough to get out of your hair in the morning.
I said the otehr day at chat I remember before I was diagnaosed w/ PA..... going
to an Ortho doctor for a shoulder that just would not heal. He took regular
x-rays and then had the nerve to tell me, "Your bra strap must be to tight".
What a waste. This was a few years before the PA hit w/ a vengenance. I remember
the boss thinking it was a sign of a pending heart attack. you know, the arm
hurting symptom.
I didn't get my shot Tuesday and now I'm not as draggy sleepy as I've been for
the last couple weeks.
I put in a lonog night last night and when I got home my ankle looked bruised
under the skin.
Oh well,
Pat B

Hi all,
Im here in Ft. Lauderdale, FL visiting my sister and Mom. I was shocked to
see my sisters psoriasis. IT covers her body. Really bad. She tried the
MTX for awhile but had no relief. She was very sick from it. Does anyone
know of a good dermatologist here? Or, what other oral meds can she try?
Would the arava help her?
I feel so bad for her
Randi

I went to Delphi and found a posting for the PA website and this list. I've
had psoriasis since I was 11, but it's been mild until this past year. I'm
34 now, mother to five children. About five years ago, maybe more, my left
hip started giving me problems. It really came to my notice when we were
moving 3 years ago and I was trying to keep up with my dh with the packing
etc, until the pain became so severe I could no longer walk. Since then I've
had continual flare-ups with my hip. The diagnosis was bursitis, and I
haven't been able to walk at a relatively brisk gait for longer than 10
minutes tops before the pain becomes severe.
When I went in two years ago to the doc for a steroid (?) shot to the hip to
reduce the pain, she noticed the psoriasis on my bottom and made the PA
connection. Other than that, I haven't had it officially diagnosed. Since
then the only time I've had insurance was during my pg this last year. I'm
glad I haven't been officially diagnosed yet--I don't have to put it on an
insurance application and risk being denied coverage two months from now.
Well, last year I became pregnant (my first four kids were born in the late
80's and 1990), and had the worst flareup of psoriasis ever for me! My
entire torso was covered front and back--like one big sore. It also traveled
down my arms and legs--just the little circle sores. The doc couldn't give
me anything for it, naturally, since I was pg. Early on in the pg my hip
got much worse, and the ligaments in my lower abdomen were much more painful
than any of the earlier pregancies. It got to the point where i had to
remain in bed until the baby was born, the pain was so bad. The pain also
spread to, I swear, every cell in my body by the end. Two weeks after Abbie
was born (She arrived 3 1/2 weeks early on May 1st) I was pain-free for a
short period of time and cried when I realized the difference. I'd lived
with the pain so long I'd not realized how really bad it had been!
Now unfortunately, the pain is returning and has been over the last two
weeks. Now it's not just my hips, but my fingers, toes, feet, ankles, knees,
elbows, shoulders, wrists. Even my neck and spine hurt! Now that it's so
much worse, I finally started doing research to find out what my options
were. From what I've been reading, in spite of how much I'm hurting, my
condition is still mild in comparison to what the rest of you are going
through! My heart goes out to you all. I'm still mobile, still able to type,
still able to make a fist. I also have a health club membership at a place
that offers an arthritis sufferers' water aerobics class.
I'm also obese, 100 lbs overweight. I'm hoping to learn more about how diet
affects PA symptoms, and what changes I need to make in that department.
I'd like to know what others have discovered along the way with food choices.
I did discover with this winter's P outbreak that a really high quality
extra extra virgin olive oil rubbed into the P softened the sores, reduced
the burning and made me feel a lot better over all!! It even helped it begin
to heal, I think. I know it didn't increase in size after that, when before
that it was continually growing and spreading. My back and front were just
one big sore. It had started out with a bunch of small ones and they all
spread so big it became one big one. Fun fun. :-) Luckily my dh never says a
negative word about it, rubs in my creams for me on my back, and still
treats me the same as always.
Has anyone else found this to help -- olive oil?
So that's me in a nutshell--married 14 1/2 years, four.. oops, *five*
children, obese, in pain, trying to care for a newborn, and desperately
wishing there was extra money coming in to hire someone to help with the
cooking and cleaning! ;-)
Thanks for the list! I'm very excited to have this resource to learn more
about my condition. What a blessing the internet is!!
Kathy Fowkes
fowkes@...

Hi Pat
I suffered with this for a long time before ever
seeing a doctor so I don't know if my results are
typical. My RD only recently sent me to see a hand
surgeon who did suggest surgery. He wants to replace
the four knuckles where the finger meets the hand on
my left hand. I'm not really sure what else will be
involved because I'm putting this off til next year
when my mother who is retiring will be available to
help with my 3 yr old daughter. I'm the primary care
giver and can't imagine taking care of her by myself
one-handed even though she is a good kid. In any case,
I firmly believe that if I had started on a good DMARD
sooner I wouldn't be in this position now. Live and
learn. Keep that hubby with the health insurance, I am
making a concerted effort to hold onto my wife for
that purpose primarily(g). Don't know how limited your
motion is but that is the main reason I will be
getting the surgery, the pain comes and goes but is
mostly under control. Each case is different and I
understand surgery is only necessary in the most
extreme(lucky me) but that may be overstating it. What
I mean is, don't assume you will ever need surgery,
with all the new drugs coming out you may live a
fairly normal(whatever that is)life. One final tip, do
as much as you can comfortably each day. Exercise
without damaging your joints is very important and the
best way to stay flexible.
Courtney
===
Courtney C McCullough
thelockhorns@...

Hi all --
I hope you have been taking advantage of the new PA
webpage. When people begin sending me their case
histories, photos, whatever, I can build up that
section of the page.
My most recent edition was to make the address
somewhat
more simple:
http://www.wpunj.edu/pa/
The old address still works, of course, but this one
is a bit shorter ane may be easier to access. As
always, be sure to let me know what you want on the
page -- after all, it's OURS, not mine!
Thanks -
Robert Harris (raharris)
Wayne, New Jersey

Hi all --
I want to note that our new PA Webpage is mentioned
in "This Week in Arthritis" at About.com :
http://arthritis.about.com/library/blarthnews.htm
Also new on our website is the "Case Histories" page.
http://www.wpunj.edu/icip/pa/casehistory.htm
I encourage everyone to send me your stories and
pictures. Having this page to share will help us to
create a community, as the listserv has done, and will
serve to educate others.
Thanks!
Robert Harris
Wayne, New Jersey

Hi Pat It is my understanding that only one subgroup of the 5 types of
arthritis causes deterioration to the point of "dissolving" and that is the
mutilan type which is rarer than the others. I may be wrong.I've seen one
case of this where the person's fingers could bend like rubber. Is this what
you mean?

Sorry Courtney,
Actually the post was sent three times but on the second one I hit send
to the list instead of delete. I did delete the third one. The important
thing is to keep exchanging information about this arthritis. I do try
to delete multiple messages.
You said you had PA for 12 years now? How long did it take for your
joints to deform to the point of needing surgery? RAHarris said his
Rheumy told him that w/ PA the joints will dissolve and since I've had
PA since before the diagnosis in Jan of '98 I'm worried. I wonder how
long I'll be able to continue to work. W/out the pain med I'd couldn't
move so at least I have that to keep me moving for now. I told my
husband that we should pay off the bills and hope I can stay at work for
as long as possible. Thankfully I have insurance thru both my work and
his.
Pat B

Hello everybody
Just a quick note to send good vibes to all fellow PA sufferers. I am a 33
year old male living in the U.K. I'm married with no children (yet!). I've
had P for 15 years and PA for 8 years. It seems the PA was triggered by a
car crash I was involved in. It's affected (at various stages) my ankles,
knees and neck. Fortunately I seem to have it under control using the drug
Chloroquin (Avloclor) which I believe is primarily used as an anti-malarial
treatment. My Rheumatologist listed various treatments (after I had tried
Chinese "herbal" medicine with no improvement) including Methotrexate which
all sounded a bit scary! I opted for the one with the least chance of side
effects and was lucky enough to see an big improvement.
My Rheumatologist also suggested getting as much exercise as possible to
strengthen and protect my knees - a bit difficult when it hurts to walk!
Swimming is excellent, but only if you can relax with everybody staring at
the guy with the (Psoriasis) plague! I took up Cycling as an alternative -
which took the impact off my knees and ankles and put me on equal terms with
my able bodied friends! They don't like losing a hill climb to someone who
can't run 20 yards!
My heart goes out to PA sufferers who are still searching for relief. Try to
keep smiling.
Best Wishes
Adrian

I've had a similar experience. The MTX was the way to go, for me. Wish I'd
started on it sooner. Yes, there are side effects, but they are not as bad as
the constant pain and loss of finger/toe joints. Make sure you get a
prescription for folic acid with the MTX.
Plus, the vampire ladies who work in the lab are real nice every month ;-)
happy trails - Rob Glover
<<
That's the way my first RD started out, real conservatively. My new RD
is pretty aggressive though, and I think I prefer it that way, I had a
lot of joint damage really quickly, and I wonder if I had been put on
DMARDS earlier, if I might not have been able to avoid some of that
damage.
Steve

Mary,
I have terrible swelling in my hands and feet. More my feet lately.
Sometimes I can't get my Birks on and that's bad! I always wear them big for
this purpose. I have had a terrible time since it got hot, I thought I'd
feel better. I cover my feet in lotion and lay in bed with a fan blowing on
them. I know how bad it hurts. I'm thinking about soaking in cold water next.
Amy

Hello all
I'll try to make this brief. I am a 39 yr old father
of one 3 yr old, happily married who has suffered with
PA for about 12 yrs. I am currently on 17.5 mg MTX a
week 2 tablets of indomethacin and 3 pills folic acid
daily. I'm due for joint replacement surgery, the four
knuckles at the hand on my left hand, in the spring.
Delaying this procedure til then because my mother,
who is retiring, will be able to help with the baby
then. I am the primary caretaker for my daughter
Regina while my very supportive wife is the primary
breadwinner. I hope to gather some real life
experiences from this list. Maybe make a few friends
along the way. Thanks in advance for any suggestions.
Courtney
===
Courtney C McCullough
thelockhorns@...

I have just been diagnoised with PA by a RA. He is
trying nsaids first. I am now taking naprelan(naproxen
sodium). Did anyone else start out this way? He said he
wanted to start conservatively with the treatment at
first. I only have pain in both knees with no swelling.
They are extremely stiff first thing in the morning and
after sitting for a long period of time. I kind of walk
with stiff legs. After reading about the methotrexate
that some people have tried, it sounds like there are a
lot of side effects.
Jim

Hi all,
I've about had with Methotrexate and I am doing a little experiment
on myself. I am having a hard time telling if the Mtx is helping.
I've been on the stuff for 5-1/2 months at a dose of 6 pills a week. I
skipped my dosage this past weekend and was wondering if anyone has ever
skipped a dose for whatever reason and noticed a worsening of their
arthritis due to the missing medication? And vise/versa, notice an
improvement of their arthritis?
Any help on this question is greatly appreciated!
Note: I am cross posting this to the alt.support.arthritis newsgroup.
Thanks in advance, Tony.

Hi all -
You may remember Michelle mentioned that we are going
to have a webpage that accompanies out listserv-based
support group. You can see the first iteration of
that page at http://www.wpunj.edu/icip/pa/
The easiest way to get there is to highlight and copy
the URL with your mouse and paste it into he "address"
or "location" section of your web browser.
Of course it is not done yet. In a sense it will
never be "done," as we will continue to update it with
our experiences, new weblinks, etc. We need some
help, however:
1. Please look at the site and send any suggestions
re: site design and/or content.
2. We would like to have a professional board of
advisors, and perhaps the best place to start is with
our own physicians. When I see my rheumatologist in a
two weeks I will ask her if she wants to have an
informal role on the board, and I'm encouraging you
all to do the same.
I don't know what are the legal ramifications of what
we are asking -- might doctors shy away for fear of
being held responsible in any way? I haven't the
foggiest idea, but it does not hurt to ask.
Please send any suggestions you have, either to me
personally or to the list. I'd perfer all discussions
take place on the list itself, so we can all share in
the decisions, making this truly a group project.
Thanks --
RAHarris
Wayne, New Jersey

Hi everyone, I'd like to ask a question: Have any of you had the problem of
your blood sugar shooting up high (above 600) for no apparent reason? I am
trying to figure out what is happening to me by process of elimination. I am
taking methotrexate 20 mg injections once per week, I'm participating in an
Enbrel study for PA and I take amphetamine sulfate for narcolepsy. I also
take Oxycontin for pain.
Besides the elevated blood sugar, I have a GIANT blister under my tongue that
is causing me so much pain I'm almost going out of my mind. I have some
numbing gel to put on it (prescription strength) which isn't helping much.
Anyone have any suggestions? Thank you thank you for listening.
Mary

In a message dated 6/12/99 5:35:42 AM Eastern Daylight Time,
PsoriaticArthritis@onelist.com writes:
<< I would like to hear from people who can tell me about the effect
(and side-effects) of MTX
Hi, skana
I've taken three doses of MTX (7.5 mg each) so far. I've have already seen
improvement in my pain, particularly toward the end of the day. I still have
some morning stiffness, but it's not so bad. As far as side effects go, the
first time I took the MTX I felt a little dizzy, sort of "off", and was very
tired. I also had very slight diarrhea for a couple days after. The next
two weeks I took the pills in the evening and slept off the worst of the
fatigue, and the other side effects don't seem as pronounced (maybe I'm just
getting used to it?). I have noticed a bit of forgetfulness; whether that's
from the MTX or from any of the other drugs I'm on remains to be seen. LOL
I know what you mean about being spooked over the side effects. I am going
back to my rheumatologist next week for the first blood screenings since I
started MTX. We'll see how my body is tolerating the drug. Hope this helps.
Patty

Hi,
I got the plugs put in my lower tear ducts last Friday. I haven't been
on the computer as much since I'm finally getting to sleep thru the
night most nights. HURRAH!
Boy, what a big difference. My regular doc had said it was just
allergies but this relief is worth the time spent at the eye doc's
office. Two and a half hours for my first exam and then back for the
collagen plugs and two weeks later for these plugs and go back in a
month for a check-up. When he put in these semi-permanent plugs he put
the collagen plugs in the top ducts for added relief. He said he didn't
use semi-permanent plugs in all the tear ducts because his patients used
to get too many eye infections.
Got to go to work,
Pat B

Hi everyone,
I met someone today that also has Sjogrens Syndrome. She has had it for
years (most of them undiagnosed), also suffers from Rheumatoid Arthritis and
now needs to live at a nursing home as a result of her total immobility.
What really struck me, aside from her strength and courage to go on, was that
the physicians who care for her have never discussed her treatment options
with her.
Her eyes burn all the time, she is very light sensitive, and her mouth is so
parched she frequently has trouble with swallowing (as do I when I flare). I
was happy to tell her about my punctal occlusion which frees me most of the
time from needing to use expensive replacement tears, completely cured the
burning and gritty sensation, and for the most part has helped dramatically
with my mouth/throat. For the mouth/throat I take Salagen four times a day
when I flare badly, otherwise I use a very pleasant spray called Salivart,
and drink all day long (especially in this heat).
If anyone else on the list has Sjogrens along with the PA, lets talk about it
too!
Michelle

Hi,
Some how the paraffin treatment seems to have been mixed in w/ waxing
hair. The treatment does not take hair off. It helps get the swelling
down some and softens the skin. I used the recipe off the tidbits page
at Arthritisnet on Sunday and this is what happened:
It took over three hours for four pounds of paraffin to melt in the
crock pot. I turned it on high or I'd be still be waiting and then
turned it down toward the end of the melting. I poured in the cup of
mineral oil and turned the crock pot off to allow the mixture to cool
and film over. By cooling i mean down to 125 degrees for the next step.
Stirring sporadically thru the process.
Chicken? Yes. I let it get down to 120 before dipping my hand in it but
it was still hotter deeper in the pot. I followed the dipping directions
and then wrapped in saran wrap and then wrapped in a towel for the 20
minutes post dipping. Then I did an ankle/foot by holding it over the
pot and pouring out of the measuring cup used for the mineral oil in
short pours to copy the dipping effect. Once wrapped i had my son help
me do the other hand before the paraffin could cool. After waiting so
long I was determined to do both hands/wrists.
After 20 minutes it was very easy to unwrap and put the paraffin from my
hands etc back into the pot for the next time. The paraffin was not
stuck to my skin. It was sort of like a stiff glove. The paraffin/heat
seems to draw the moisture ie. swelling from the body parts that are
dipped in it. Being very fair skinned there was some redness that went
away within a couple of hours and the skin felt very soft. Two days
later the skin still feels softer but the joints don't show any
difference. It felt good for a few hours but it probably would be more
beneficial for someone w/ more joint involvement since my joints are not
deformed and I haven't gone thru any surgeries (knock on wood). Maybe I
would notice an improvement if I wasn't already on pain meds?
Warning! The recipe says not to use if you have open sores on the skin?
I suppose for outbreaks of psorasis it would be better to ask the doc
before using? I feel it means open like in a cut but safe than sorry.

Welcome to the " club" Graham and nice to have you. You have been lucky to
get by all theses yrs with very little problems from PA or P. I have tried
most of the things you r on and I'd like to know how you find the
cyclosporin. That was a recent option for me but I opted for the gold
injections. Is the cyclo covered there? I don't think it is here. Anyone in
Canada know for sure? I seem to think there is some " stipulation " or
something to getting it covered. Anyway, hope you enjoy your stay here
Graham.
Angela in Canada

Hello everyone,
Hope that this finds you better than it leaves me at the moment but not to
worry I am now convinced that stress and worry certainly does "help" PA and
P come out to play!!!
Now the tale of two very sick dogs, mine, Poppy is 3 and Ollie is 8 and on
Wednesday evening Poppy was rushed into the vets for an emergency
sterilization. She developed pyometra and had only a short while to live.
Glad to report she is back to her usual labrador ways. Ollie is epileptic,
arthritic and has a heart condition, and he went through the worst seizure
we have ever witnessed, and after talking to our vet Thursday afternoon, we
have to decide on what is best for Ollie despite our own feelings.
Now you might ask "What the heck has this to do with us", I shall tell you,
I came back from the UK on Tuesday with not a mark on my hands from P, and
very little discomfort in my joints despite a 12 hour car/boat/car journey
home. Wednesday morning also was a good start for me but when Poppy started
to show signs of being ill, my worries for her started as well. I even
managed to drive to the vets to collect her.. and I haven't driven "solo"
for ages, but once I got her home and reasonably comfortable I started to
ache and after washing my hands noticed a couple of the tell tale "pimples"
start rearing their ugly heads on the palms.
I didn't sleep all of Wednesday night but stayed with my lass, and then at
6am we had to phone the vet as she started to haemmorrage. That has now been
stopped and all is well with her, however on Thursday afternoon Ollie had
this bad fit and we talked in depth with the vet about him. Within an hour I
was doubled in pain with my neck, hips, ankles, fingers, elbow, and spine
giving maximum grief, and of course the swollen feet as well as the
"porkies" on the ends of my hands. My hands are absolutely pickled with
pustules as is my one foot and scalp, and my one foot has fissures like the
Grand Canyon ( Ok the foot wasn't completely clear before this episode but
was healing over very nicely thank you!)
Now for all the more knowledgble P's and PAer's amongst us, can you explain
how I could flare so quickly over such a very few short hours? I thought
this was an auto immune related illness, so what is there that can cause
such an aggressive flare. I can only put it down to stress and worry.
I have gone back onto Prednison, 15mgs for 2 days then reduce by 5mgs every
2 days until I am off again, and I am using the Ridaura ( oral gold),
Diazapam 10mgs at night to help relax me, the meds for hypertension and my
stomach and allergy.
What a homecoming from the Christening of our first Grandchild!!!!! As a
"bonus" I have started the "Hot Flushes" again which I thought had gone for
ever but no, they are back.
So now I am certain that stress has played a major part in this episode and
will have to try much harder to stop worrying in the future.
Your comments are much appreciated. Regards, ConnieD.
PS. You can see me and mine at http://fadedjeans.com/special/owen.html at
least you will have an idea of what I looked like before and after Arthur
came to lodge with me LOL!!!

Can anyone tell me the directions for using a crock pot and paraffin wax
for the deep heat treatments of the joints?
Time table? What mixes w/ the paraffin wax for it to work right? How
long and how much?
What will I need in addition to the paraffin wax and the crock pot?
Lotion? Clean up supplies? What temp am I looking for? Or what setting
on the crock pot?
I remember that someone had this information but I can't remember where
I read it. Hope to hear from someone w/info or a lead on where to go
look.
Michelle, I use the heated throws that can be found at Kmart. The size
of an afghan w/ three heat settings and washable.
Thank you,
Pat B

my doctoria gave me alot of trouble. so i take three pm pills at night . some
times i take four. my sleeping got alittle better,but i told my doctor about it
cvause i started to jump in my sleep. it scared me and woke me up. well now i
take 75mgs of evail. i feel alot better now. he also give me muscle relaxers.
only to take when i have a bad day and need that extra sleep. i only take it
when i am not able to fall asleep with the other medicines. gloria at
bunnylane@...

Ok, Ive been on the Arava for a week, and I do NOT have any side effects yet.
How long will it take before I start to lose my hair? If that happens, I
will stop it, I cant handle that
Randi

I would like to know from anyone who has taken or is taking gold injections
how they have found it. I just came from the doctor today and she wants to
add gold injections weekly to my already growing list of
meds...methotrexate weekly injections, arthrotec, plaquenil, codeine
contin, tylenol#3, elavil and folic acid. This means I have to go to the
hospital 2 days a week ( a 40 minute drive each way ) and get 2 injections
a week ( one in each hip ). I have been reading briefly about gold and it
seems to scare me a bit. I know it's probably no worse than the metho, but
if that's true, why blood tests every week? It seems to have more possible
side effects and more potent ones.
I am thinking that maybe I should not do this and go off of work for a
while and let these other meds have a chance to work. I've been on the
metho for over a year and she doesn't really see it doing anything but I've
recently been taken off indocid and started on the plaquenil and arthrotec(
only 2 months ago ). Does this sound like a sensible thing to do?
I am so confused as to what to do. She told me to think about the gold and
that's all I've been doing ever since. It will be really hard to stop work
( financially ) ,but maybe these drugs will help if I'm not working all the
time. I just don't know.
This has turned to be a long question and I apologize, but I need some
advice from anyone who is on this and what they found as well, maybe most
importantly, about side effects.
Thanks.
Angela

thanks, Michelle for the list. I don't know what narcoleptic episodes are --
could you please explain?
Patty

Hi everyone,
One of our own, RAharris@...
otherwise known as Robert, has volunteered his professional capabilities and
time to put a web page up about our group and PA. Please e mail him directly
with any suggestions for format or content of the web site. We all need to
contribute to make it a successful web site!
Michelle

Dear list members,
Today onelist.com had about 6 or 8 email lists go haywire. Information
is wonderful. If most of the people subscribed to the lists were
informed and knew what to do they would not have aggravated the
situation.
Onelist is an AUTOMATED system for email to be received and sent out to
members of lists. If I write to PsoriaticArthritis@onelist.com my email
message goes out to all the members of the PsoriaticArthritis list
(ditto for Arthritishelp respectfully). The PAlist is moderated so
someone has to go to onelist and read the message before it is sent to
the members of the PA list. The Arthritishelp list is unmoderated so the
message is automatically sent to the members of Arthritishelp.
If something happens to the AUTOMATED system the best thing to do is NOT
to write emails for a short while to see if the system gets fixed. What
happened today was members who are used to getting a single daily email
were flooded w/ mail because they wrote repeatedly to the list in
frustration to be unsubscribed since they got soo much mail. They became
part of the problem. They were writing to the list and not to the owner
of the list or even to the help center at onelist.
Members of the lists that knew how to unsubscribe or go to "no mail"
tried to send out instructions to help the problem. Many people don't
bother to read instructions unfortunately.
Knowledge is power. If the system ever goes haywire please act
responsibly.
A. Have patience
B. change to "no mail"
C. To unsubscribe:
1. Go to www.onelist.com
2. On the left hand side sign in with the email address you use for the
list and your password.
3. Two buttons below the password space click on "member center". It
will take you to your very own page w/ a list of all the email lists you
have joined at Onelist.
4. There are columns that say "digest" or "no mail" and to the far right
the word "unsubscribe". If you click on "unsubscribe" you will get
another page asking you to confirm that you really want to unsubscribe.
Remember to rejoin the lists you really want to stay on later.
The only way to get on a list is to join (subscribe) so the way to get
taken off a list is to unsubscribe. Many people still have no concept
that they can take themselves off a list that they put themselves on.
If you ever have an email system go haywire you now know what you can do
(I bet we knew already).
Please continue to write about your arthritis and how you are coping.
Sorry to take up your time with this message. One of the lists had over
200 messages in a short period of time. A lot of bad language was flying
over the internet today that could have been prevented.
If you haven't already you might try writing a short note w/ your age
and how long you have had arthritis. What type are you fighting and how
are you fighting it? Any good news lately? Has your doctor learned of a
new medicine to try(like Remacide(sp?))? Have your family members
supported you or ignored you?
Take care,
Pat B

Dear Michelle:
I'm Brazilian. My son is 25 years old and recently he had the diagnostic of
Psoriatic Arthritis. He is now starting the medication of Methotrexate and
I hope that he could fight against this disease with the support of our
family, friends and all these good people that could share their experiences.
Thank you,
Eduardo.

I was just diagnosed with PA last year. I had been having intermittent bouts
of stiff joints and tendons for about 8 years but was only diagnosed with PA
last year when one of my thumb joints became severely swollen. I took
prednisone and sulfasalazine for a few weeks. The doctor pronounced me OK at
that point.
I seem to be having a flare again....the thumb is reswelling and a big toe
along with it this time.
I'm getting ready to go to a rheumatologist. I would like to get some info.
about DMARDs from the people reading this list, just so I'll have some
additional info. beyond whatever I will learn from the rheumatologist.
How severe does the disease need to be before starting methotrexate or Arava?
I'm also having a lot of non-swelling joint and tendon stiffness and pain.
I'm taking Celebrex, and it seems to take the edge off the pain and the worst
of the stiffness out of my feet and ankles, but I can tell it's not going to
take of the swelling in the thumb and toe.
I have chronic fatigue syndrome and fibromyalgia, so I already have a lot of
fatigue and pain from that. It's very hard to sort out the effects of the PA
on those symptoms.
I'm not sure if I've asked a clear question here.....I suppose I'd just like
to hear some opinions about what kind of treatment I need, since I don't yet
have an established relationship with a rheumatologist that I trust.
Thanks,
Dwanna

Hello,
There is a new survey for the PsoriaticArthritis community.
HOW LONG HAVE YOU HAD SYMPTOMS OF PSORIATIC ARTHRITIS?
----
Possible answers are:
o LESS THAN ONE YEAR
o 2-5 YEARS
o 6-10 YEARS
o 11-15 YEARS
o 16-20 YEARS
o 21-30 YEARS
o 30-40 YEARS
o 41 YEARS OR MORE
To vote, please visit the following web page:
http://www.onelist.com/surveycenter/PsoriaticArthritis
Thanks!
PsoriaticArthritis Owner

Hello, nightshade vegetables are things like potatoes, tomatoes, eggplant.
I'm not sure on this, but they may be things that grow in the ground, not
all, but some. Also I think you are referring to DMARDS when you say DAD.
These are " disease modifying anti-rheumatic drugs". Things like
methotrexate, gold, plaquenil
Hope this helps and a great book with info on all medical conditions and
diet is " Perscription For Nutritional Healing". Another is " foods That
Harm, Foods That Heal". This is available through Reader's Digest.

Angela,
Mine was first noticed when my wrist was giving me problems and
cortizone shots didn't help. Then it spread. Maybe it is the noticing of
the arthritis and not the "surgery" that is happening? I had aches and
pains prior to the wrist but never thought it was the start of
arthritis. Like cutting back on walking but didn't know why just did or
carrying a bucket w/ a metal handle and blaming the cold weather for my
hand hurting and the weight of the stuff in the bucket. Thinking back
there are probably symptoms of arthritis that just were blown off and
lived with.
Pat B

Someone asked about foods that if avoided might make them feel better?
Subject: nightshade foods
In case you did not know, nightshade foods include: tomatoes, potatoes,
bell peppers, tobacco, eggplant, and there may be a few more out there.
You may not have to avoid ALL nightshade foods, but watch out for them
and see if you react to any of these foods.

Desiree, could you explain what penny loafers are for the "overseas'
visitors. I wear Ecco shoes and for Christmas had TWO pairs bought me by my
Mom, a VERY much appreciated present as they are around $100 a pair.
Thanks Connie
Date: Mon, 17 May 1999 08:53:46 -0700
From: Desiree Stimson <directgrafx@...
Subject: shoes
Hiya,
Just a note to add to all the shoe stories. Although they arent the most
attractive shoes in the world if any of you have S.A.S. comfort shoes to
your avail they are incredible. They even have sandles. I used a soft
sandle that was a slip on for walking to the bathroom at night etc. It
was much easier that lacing tennis shoes at 2:00 a. m. They also have a
penny loafer for your not so bad days. The shoes come in all sorts of
widths.
Recently, Ive been able to shop for other types of shoes and by the
recommendation of my podiatrist friend suggested to get "rocker-bottom"
shoes. The new platform slides that are out there are "dreamy" Believe
it or not I recently purchased a pair of 9-West shoes that were 3.5"
high and they are my most comfortable shoes. With the platform my dr.
friend said the rocker motion takes the weight off the balls of your
feet. And I have found the open toe soft leather slides the first shoes
from a standard manufacturer that didn't need to be broken in.
Just a suggestion . . .
Hope it helps.
Dez

Hi, I am wondering to the person who wrote about adopting their kids...how
did you go about doing this? I have thought about it LOTS of times, but
have no idea where to even start. And does it cost alot? We live in
Canada...we make good money, but like most, don't have money to spare. Live
pay check to pay check. I'd LOVE to adopt but need some guidance. And did
it take long to get your child? Here, if you are put on the provincial
adoption possibilities list it is about 10 yrs. I'm not sure we would be
eligable by then( I am presently 32 and my husband is 38).
And about antibiotic therapy? I've seen alot of people writing about it.
Can it be used after arthritis has been around for awhile? I've had it
since I was 25 and it has progressivly gotten worse. Would this be
something that could benefit me now?
Angela

Hiya,
Just a note to add to all the shoe stories. Although they arent the most
attractive shoes in the world if any of you have S.A.S. comfort shoes to
your avail they are incredible. They even have sandles. I used a soft
sandle that was a slip on for walking to the bathroom at night etc. It
was much easier that lacing tennis shoes at 2:00 a. m. They also have a
penny loafer for your not so bad days. The shoes come in all sorts of
widths.
Recently, Ive been able to shop for other types of shoes and by the
recommendation of my podiatrist friend suggested to get "rocker-bottom"
shoes. The new platform slides that are out there are "dreamy" Believe
it or not I recently purchased a pair of 9-West shoes that were 3.5"
high and they are my most comfortable shoes. With the platform my dr.
friend said the rocker motion takes the weight off the balls of your
feet. And I have found the open toe soft leather slides the first shoes
from a standard manufacturer that didn't need to be broken in.
Just a suggestion . . .
Hope it helps.
Dez

Hi, I'm very new to all this and happy to find a group to come to with
questions. I will be 50 next week (as if that isn't enough stress!!) and was
diagnosed with PA about 5 months ago. I have had mild P for about 30 years
(scalp and occasional spots elsewhere). So far only toes are affected, but
I'm terrified at the thought of it spreading.
I do a lot of work with my hands - I own a knitting store - and do quilting,
gardening and everything else one does with one's day.... I get some
stiffness in my hands, but I think it's just overuse, because it's bet