For those who have Psoriatic Arthritis

Hi all,
First I want to thank all who replied to my questions. I am still new
enough to all of this that I am not sure when to worry and when to
just say "oh it's going to be one of those days!"
I did call my rheumy who sent me to my GP. GP told me that the
tests indicated that I had a UTI but he didn't think it was a kidney
stone. He called last night to discuss my s-ray and when I talked
with him finally today, he told me I have a large stone that I am
unlikely to pass. So now I get to add a new doc to my list of visits.
I talked to my mom's sister (she has RA but is also on MTX) and
she told me that UTIs are a common secondary infection with MTX.
Has anyone else had that experience?
Again, thanks to all who wrote me.
Charise

Hi Margaretha and all.
Interesting about the flu shots and flares.
2 years ago, I had a flu shot, to the best of my recollection, had a big
flare of P, and about 2 months of terrible neck pain- went to my F/P and had
Xrays which showed really diproportionate arthritic changes for my age (48 at
that time) , was told to go see a neurosurgeon for follow up, which I never
did) It improved some with time, but has bothered me for so long I can't
remember when it did not hurt. The PA was diagnosed in fall of '98-- did
not have a flu shot that year. Had one in '99 --on mtx-- nothing
sugnificant---- for what that's worth.
Nancy in Wisconsin

Hi Margaretha,
I am the one who started all this immune system talk last week. I didnt know
my email would get this type of response.
It is total amazing how alike our cases of PA are....
Ive had no colds in a few years and a terrible flare up of PA after I
received a tetnis shot last November. Im just starting to feel better now
and swelling is going down in my finger, and walking is easier as well.
Somehow, I still managed to have a good winter. Even went skiing out west in
January before I was diagnosed with PA. I was eating advil just like it was
candy and got through the skiing without any broken bones...
Take care, John.

Enter your vote today! Check out the new poll for the PsoriaticArthritis
group:
Do you have any other family members diagnosed with psoriasis/psoriatic
arthritis?
o yes- diagnosed and confirmed
o No
o perhaps- relatives won't go to doc
To vote, please visit the following web page:
http://www.onelist.com/polls/PsoriaticArthritis
Note: Please do not reply to this message. Poll votes are
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Thanks!

Hello all,
As I thought I expressed clearly before, I only asked EVERYONE, to limit
their off topic listings to two per day. This was because the length of the
daily digest and amount of messages was getting way too long- and I feared
that we would begin alienating a lot of people- who had time constraints on
how much time they could spend reading the list each day.
I want to remind you all to put "OT" in the subject of your offtopic, but
welcome funny stories, etc... that way those who want to skip the humor can
easily do so.
I also want to encourage the end of the discussion on this topic for now,
since everyones opinions on my request are gumming up the works with
excessive e mails on this very boring and now settled topic!!!
Thanks again,
Michelle, your fearless leader....
Remember- we are over 280 strong now- we need to give everyone a chance to
say hi and ask questions and not scare them away with a lot of infighting!!!

MTX worked wonders for me at only 5 mg/wk, either oral or injected, but I
had to stop taking it because of the side effects. I work 7 days a week and
cannot afford one or two days to be sick. After 3 months the nausea and
fatigue had not subsided at all and adding even more drugs to treat that
seemed excessive. My whole life revolved around "M" days, the days my kids
had to leave me alone, I couldn't work, did I get my anti-nausea drugs in
time, too soon, too late...it wasn't worth it.
Celebrex did nothing for me at any dosage, 200 or 400. The lovely irony of
it all is that I'm a clinical research nurse and helped with the drug trials
for the cox-2 inhibitors. I couldn't WAIT for Celebrex to hit the market.
Didn't work for me at all.
Now I'm on Azulfidine, 2 g per day and Vioxx, 25mg. Hasn't helped with the
swelling that much, does nothing for my knees, but my feet are better and I
can walk more comfortably. It's better than nothing. The combo is not
nearly as good as MTX and Relafen but that destroyed my stomach. But I sure
was comfortable lying in bed! It was very difficult, lots of hoops to jump
through, to get the insurance co. to cover the Vioxx so I can only imagine
the hassles to be approved for something like Enbrel.
Yes, I have the HLA B27 marker. Yes, I have a super immune system. I don't
remember the last time I had a cold, sniffles, anything. It's been at least
as long I've had PA. My youngest son is coughing and sneezing from the
first day of school to the last and everyone around me is always just
getting or just getting over something, except me. What an odd perq of our
disease!

Hi Margaretha
At last a REAL subject to discuss! Great minds must think alike, because I
was reading this subject last night in bed to Hermes. For those of you who
do not know, Gillian has succumbed to a monster of a infection! Strep
throat, swollen glands, hot and cold flushes, faint feeling and Mom still
wants me to hang the roller blinds! So I was trying to figure out WHERE I
picked this monster up from? If perhaps I could return it? And would Hermes
be at risk? Apart from walking in the fresh air, the only other thing I did,
visit my Uncle in the Hospital, as he had a heart attack.
So here is part of what I was reading last night. Sorry to those of you who
find it boring!
"It was first assumed that the ability to protect ourselves against
infection and recovery from it, depended on the formation and presence in
the fluid portion of circulating blood of new substances called antibodies.
In this process certain specialised cells also play a secondary but
nonetheless important part. But in some infections, it is now known that it
is the cells rather than the antibodies that play the predominant role. For
this reason it is necessary to have some idea of the cells involved before
it is possible to DISCUSS immunity as a whole.
For the development of BOTH types of immune response lymphocytes are of
considerable importance. They are small cells and their nuclei take up most
of the cell. Some are known as B lymphocytes. Human B lymphocytes come from
the lymphoid tissue associated with the GUT! When suitably stimulated the B
lymphocyte becomes a plasma cell that produces antibodies that play an
important part in immunity.
The T lymphocyte produce soluble substances which activate macrophages so
that they can kill micro-organisms. Macrophages are large motile cells and
can crawl along surfaces towards the organism which they phagocyte and
destroy. In view of the fact that the micro-organisms that may infect human
range in size from a minute mass to a enormous bacillus, it is perhaps not
surprising that the mechanisms that enable us to protect ourselves from
infections are not all the same. Some are dealt with by cell mediated
immunity, others can be called antibody medicated immunity.
Antibody medicated immunity. In the great majority of infections the
principal factor involved in immunity would seem to be the formation by
plasma cells of one or more antibodies that become part of the fluid portion
of the circulating blood and are thereby carried to the infected area. They
are a specialised type of protein consisting of a globulin and are not as a
rule present before the infection, but make an appearance about the time of
recovery and frequently persist in the plasma for long periods afterwards,
sometimes for many years!
Antibodies facilitate recovery from infections and protect against further
infection. Some antibodies render inert the substance on the surface of the
organism, some render the toxin and poison products innocuous, some combine
with the virus, enter the cell in which the virus must multiply, thus the
organism encompasses it's own destruction.
The cells that produce antibodies are stimulated to do so by chemical
compounds known as antigens.
Although the sources from which these compounds come disappear when the
infection is over, antibodies continue to be produced probably because they
have been "educated" to do so, even when the antigen is no longer
available. This is why a second attack of such infections as measles, and
chicken pox are so unusual."
Right well that is enough CLINICAL INFORMATION for tonight. However what I
would really like to know, if B lymphocytes come from the lymphoid tissue
associated with the GUT, I wonder if what we eat and digest affects them?
Food for thought?
Love and God Bless
Gillian

Hello group,
I am one of those persons who is immune to nearly all
bugs and viruses. I always considered it the only
positive part of PA.
I would like to ask one question to the "immune" ones.
Last year I mentioned that I have had three maxi-
flares (in 1990, 1993 and 1999) and all three times I
had, just before, received an anti-flu vaccination.
I was recommended to have the shots because the flu's
of those years were predicted to be nasty ones and I
had some asthma trouble (which I luckily have grown
out of).
Can any one of you remember to have flared in a bad
way after ANY vaccination?
Thank you for taking the trouble to answer my question.
Greetings.
Margaretha.
Tu correo gratis en MixMail http://www.mixmail.com
Inicia tu navegacion en http://www.ya.com

I also get FREQUENT sinus infections, bronchitis...colds.....everytime
my kids get a runny nose...I get it worse.......
I also suffered from fertility problems...corrected by drugs....whether
a connection, I don't know. I also have sore throats often....more like
post nasal drip...no known allergies though. I eat right, take
vitamins...BUT sleep is limited due to mostly my back and not getting
comfortable. Also, I am just not tired at night...but am during the
day. Guess I have my days and nights mixed up....I have most of my
energy at l:00am..can do about three loads of wash, mop and dust...like
a mad woman....I would say my immune response is yukky...Most
antibiotics don't even work for my bouts of bronchitis or sinus
infections and they simply must run their course....

Clara, I also have type 2 non-insulin dependent diabetes, polycystic ovarian
syndrome, and am lacrose intolerant. I also have the occasional anxiety attack,
but some people would say that does not count...
Janet

Well today was my 2nd visit to see my Rhuematologist. It went
good... She is very nice and doesnt see any reason for me to be in
discomfort so she is willing to do everything she can for me.. I am
lucky so far...
She said my Arthritis is not cooperating.LOL as if it would be ....
I am currently taking Indocin 50 mg 2 times a day, Predisone 10 mg a
day... and sometimes I take a flexeril to help me relax my muscles.
it is not working obviously.. So she changed my meds today.
So here goes: Indocin SR 75 1 tab 2x a day
predisone 5 mg 1 tab 2x a day
Azulfidine 500mg 1 tab 2x a day for one week then 2
tabs 2x a day....
Ultram 50 mg 1-2 tabs a day but can take 3 depending on
my pain...
So there it is ... I need advice ... Is this a good combo? has
anyone ever used any of these meds.... ? good or bad side effects?
Thanks in advance
Katrina

Gillian, I hope that you are not including Canada in your view of America! In
Canada, we do things quite differently. I resent being called an American by
Europeans! It is refreshing to see your humor gracing our list once again.
Don't be a stranger!
Janet

Hi all. Went to my rhuemy two days ago, required for refills.
I've been having some new activity in my left hand (I'm a southpaw),
and feet and knees giving me trouble, we talked over possible
changes. I've taken good care of myself, no smoke, very little
drink, not overweight. Been marinating my liver for a dozen years
w/mtx, only a few bad tests. Question: does anyone know all the
pros and cons of enbril? Can I get off mtx with enbril? Or continue
waiting for a bad liver test? I saw someone that used ultram for
pain, does it work better than any others?
I've been relatively stable for half a year or so, but with the
renewed activity, Dr. wants to increase mtx. I checked out enbril a
little, seems safer, or did I miss something?
Rainy today in Mn, odd for Feb. As I sit listening to Neil Diamond
on cd, the road is long......
We're all brothers,and sisters, under the same sun.
Older Dan

I've been on Indomethican for at least 15 years. 75mg twice a day w/ an
additional dose as needed. I have never had any problems with it. My
experience only. Becky
Message: 17
Date: Mon, 21 Feb 2000 20:09:48 -0000
From: "The Browns" <wom@...
Subject: Re Indomethcian+headache.
Hi Eliane, my drug book lists some horrible side effects with Indomethcian
including
Gastro-intestinal disturbances(including
diarrhoea),headache,dizziness,light-headedness,gastro-intestinal ulceration and
bleeding!!!!.Ugh.
Cheers Phil.
Signature by www.signature-mail.com

Hi everyone! I had a rough weekend and I was wondering if anyone else has ever
experienced this symptom. I woke up Friday with a pain the size of a quarter on
the back of my skull. If I moved my neck, it got worse. obviously, I stayed
still for the day and by the evening, it wasn't too bad. Well, Satuday I woke
up and the pain was excrutiating,. Any movement of my head or neck sent a wave
of pain to the back of my skull. I was in tears with the pain. I called my
rheumy who said to increase the pred and darvocet and I did feel better after a
few hours. Now I just get a twinge of this pain if I move my neck too quickly.
I'm not sure if this is related to PA or not. Does it sound familiar to anyone?
My dr also said the mtx is obviously not working and the next step is Enbrel.
It is not on the approved drug list for my HMO and he said it would cost $1,000
a month to purchase it myself. Not really an option for a stay-at-home mom. He
said he could try to fight my ins co. I'll let you know if anything comes of
it.
Another strange symptom I have been having is difficulty swallowing at times.
My throat feels like it does when you try to hold back tears- tight and a bit
painful- for a few days and then it will mysteriously go away. Anyone share
that one?
Janet, glad to hear you're in Ireland. It sounds beautiful. My family was from
Co. Monaghan and I would love to visit some day. Gillian, I miss your stories
too. Hope to hear from you soon.
Take good care, Kelly

Clara Nielsen asked if any of us had other health problems. I
know this has been discussed in the past....but yes, Clara many
of us do. I also have Hashimoto's thyroidism, was thought to
have or might have had in the past FM and good old menopause!
Welcome to our list!
Linda
Poulsbo, WA.

This is so interesting - I've prided myself on my ablilty to NOT get sick,
especially over the last 2 years. Until someone on the list brought up the
connection with PA - and an overactive immune system, I didn't make the
connection. I haven't gotten a cold or flu in about 2 years - since my big
PA flare. I'd give anything to have a cold now!!
I'd also like to thank List mom for getting the list back on topic. It's a
tough job, but someone's got to do it! I personally find the "facts" and
experiences of others with PA to be extremely interesting, and have gained
more insght into this disease form those who experience it day to day than
on ANY "medical fact" Web page, and I've visited plenty. :-p
Kristin Boice
Health Education Program
University of California, Davis
Phone: (530) 752-6336
E-mail: keboice@...
http://healthcenter.ucdavis.edu

I was diagnosed 1/28/99 with psoriatic arthritis and am really having
a difficult time dealing with it. I have so many questions and have
no answers.
Let me give you a little background... 1st: My great grandmother had
psoriasis badly...no arthritis that I know of...she also lived to be
93 ! My brother has Crohn's disease which I understand is all
inter-related to this autoimmune disease.
I started with flare ups with the skin on my elbows, hands and
feet...a biopsy of skin determined that I has psorasis. My right big
toe was operated on last Spring..supposedly to fix a bad bunionectomy
job done many years prior.
The Surgeon was amazed that I had no cartilage left in the joint and
he also repaired my middle toe. The problems started when I went to
the Rheumotologist about my right index finger...very swollen at both
lower joints..a visible sac like thing under the skin and a very
swollen, sausage-like finger...and very little bendability. He ruled
out gout, RA and other things with a blood test. I had been taking
Celebrex 200 mg for the past year for osteoarthritis. The Rheum.
increased it to 200mg in morning and 200mg at night, which is way
above the recommended dose. I was fine....went I returned for my next
visit he put me on 500mg of sulfasalazine 2 times a day and after one
month increase to 1000mg morning and night and folic acid also. After
two weeks on this I came down with what I thought was the flu...101
fever, chills nasty muscle aches, red face. Thought it was flu
because my husband had just had it....I was suspicious because I
did't get better..weaker and worse! I went to Dr., stopped
sulfasalazine until I improved (funny, I was 100% better two days
later) I started up again this past Sat. and Sun. and had all the
symptoms return...but worse. So, I definately had a bad reaction to
the sulfasalazine and must be sensitive to sulfa and can also no
longer take celebrex...it has been changed to vioxx.
Has anyone out there ever experienced this with the sulfasalazine?
Now I am terrified because the Rheum. will put me on
Methrotrexate...and from what I have read it scares me to death.
I feel fine, except for my finger. I wonder if I really do have PA
and is it necessary to do anything at this time or can I just wait
and see how I do? Is this something you have to take care of early on
so it doesn't get out of hand? Is it that agressive and errosive or
can I take my time. I have such denial and wonder if the diagnosis
could be wrong..... Please...I need advice from anyone who
understands what I am going thru. After reading in the archives I
feel like mine is so minor...or does it progress faster than I think!
Thanks for listening to my woes !
caeb2000

Hi Bunny and all,
I too, agree about keeping the personals. What about considering responding
to any of the posts in the archive in one email, thus keeping the total #
of posts to a minimum???? The smiles and laughter are extremely theraputic
and help me keep my attitude where I want it to be. As stinky as this disease
is, it's hard to find the laughs sometimes..... I miss you too, Gillian!!!!

Hi Janet I looked up the side effects of Prednisone in my drugs book and the
list is as follows,gastro-intestinal effects include dyspepsia,peptic
ulceration,abdominal distension,acute pancreatitis,oesophageal ulceration and
candidiasis.Musculoskeletal effects include proximal myopathy, osteoporois,
veterbral and long bone fractures,avascular osteonecrosis,tendon
rupture.Endocrine effects include adrenal suppression,menstrual irregularities
and amenorthoea.Hope this helps,by the way Methotrexate is even worse, the side
effects are so dire that before having the drug the patient must have a complete
haematological analysis.Renal function tests,liver function tests.Also
conception should be avoided for 6 months after stopping use of the drug.
Cheers Phil.

Hi Eliane, my drug book lists some horrible side effects with Indomethcian
including
Gastro-intestinal disturbances(including
diarrhoea),headache,dizziness,light-headedness,gastro-intestinal ulceration and
bleeding!!!!.Ugh.
Cheers Phil.

Hi all --
Remember, we have a PA Chat on drkoop.com tonight at
seven. Special Guest: Michelle! See you all there
--
-- please write me if you need anything --
Robert, NJ Highlands
raharris@...

Hi, I have been on low dose pred ( 7.5 mg ) daily for about 6 weeks. I also
was started on didronel at the same time. it is a package that contains
didrocal ( to build bone ) and calcimu( to strengthen bone). I take the
didrocal tabs for 3 weeks then the calcium tabs for 3 months. There are
specific instructions while taking the didrocal ( no other calcium
supplements, taken 2 hrs after or before food). With the calcium tabs, I can
take extra calcium ( I take 1000mg extra, for a total of 1500 mg ) and it
can be taken at any time. This prescription is to prevent osteoporosis
caused by steroid use.
Angela

For all who wish no personal exchange on this page, I recommend
consulting a medical fact web page. The main problem with people,
and doctors, in fact the world in general, is nobody wants to take
the time to notice people as individuals. Get right to the facts.
Do your business and move on. If it takes too much effort, complain.
Have others change to suit your needs.
I don't live my life that way, and have distain for those that do.
This disease we all share is as different and individual as we are.
I look forward to postings each day, and like the personal
interaction as well as the "facts". For someone to feel bad because
they actually got personal on this page is a travesty. Everybody
here has a common bond, has had to deal with adversity over and over,
and finally has found a place, with friends, to bare the soul.
If anything here changes to interupt the freedom to get personal,
we all loose. I , for one, have found a place to be free.
Older Dan

Hi I looked up Hydroxyurea and that is a treatment for Leukaemia. Is that why
you have blood tests every two weeks?I was thinking of trying UVA did it work
for you.
As regards Homeopathy it is very much a long term thing.But since I was first
diagnosed with PA the A part has got no worse in 8 years of Homeopathy
treatment.I take three different types of pills Kalium Arsenicum,Radium Bromatum
and Silicea Terra.I just take one of each a day they are very small round pills
with no taste.Yes I find the Dead Sea products helpful.I am a member of the
Psoriasis Association but I agree they are very much in the dark ages.A local
group (Berkshire) was started 2years ago but it fizzled out.
Cheers Philip Brown.

My doc just prescribed a very low dosage of 5mg daily of prednisone. He
told me that it can cause bone deterioration after some time. Like you
Charise, I have had problems with most of the drugs I have taken, except for
methotrexate, oddly enough. But I came off of that because I don't want to
risk getting pregnant while taking it. What else do you folks know about
prednisone?
Janet
moderator note: take extra calcium while on pred, PatB

PLEASE don't make this list a mandatory digest; I would prefer the OT
preface. This is because I like to keep posts that I consider relevant and
important to my medical care or mental state, and I delete the others,
choosing to read some before I do and choosing not to read others. If this
list turns into a digest(or two - one "social" and one "medical") I will
then have a much more cumbersome job sifting through a past digests looking
for the part I want to reference.
I manage my email by using FILTERS - anything that comes in from PA@onlist
goes automatically into a separate mailbox and is removed from my inbox. I
then read them when I feel ready to and it does not mingle with the email
from other parts of my life. I filter much of my email - financial news,
travel newsletters, my husbands, each into the corresponding mailbox.
We could come up with more than one preface - it could be ADMIN, OT, HAHA,
whatever.....
My 2 cents
-April

my peroids were so heavy i became anemic.then had a d and c and was started
on a bc pill. i was told i have uterine fibroids...related to PA...don't
know. with the progesterone only pill that i take, i don't menstruate at
all...mo

Janet, hello, do you think your pcos is related to pa? I ask because I
have had ovulation problems in the past and had to have it induced by
clomid to have children.
Curious??? Also at 34 my periods are so bad at one time I thought I
might have other problems...but so far, none found. So from what I have
read, for us women..this is an extra added benefit from having
pa.....???
Jayne

Hi fellow PA members,
Im new to this group and was diagnossed with PA a few weeks ago. Ive got all
the symptoms and a real sore finger right now. I was wondering if PA is
related to a persons immune system. I figure Ive had PA for a few years now.
In the past few years I havent been sick and every time I feel a cold coming
on my body fights it off. Is there a connection here?
John.

Also, I do notice my symptoms seem worse around my period and I am also
getting it approx every three weeks now. Is this from the MTX or the
prednisone?
Hi Kelly,
When I had three joints injected with cortisone, I was very late for my
period. This freaked me out as I'm always right on time ( on the pill of
course cause of all the meds). I asked the doc and she said no, it wouldn't
be from the cortisone. Anyway, the next week when I went in, she apologized
and informed me that my white cell count was 22!! SAhe said it all pointed
to the cortisone. I am apparently very sensitive to it. I have been taking
prednisone tabs daily for 5 weeks and no problems with my periods, but am
only taking 7.5 mg daily. So, yes, the prednisone can affect your periods.
Angela

Hi Michelle,
Thanks. I was just thinking the same thing yesterday when I was reading my
digest version. I didn't want to be the one to say it though. I appreciate
your reminder.
Angela

In my experience the dents are a sure sign of PA- the docs all look for it.
My nails chip, peel and generally don't hold any hopes for any length unless
I keep a good
non-allergenic formaldehyde free clear polish on them at a minimum. On their
own the rips tears and chips get really down to the quick.
I have never had any other nail troubles however, once in a while the P gets
under the outgrown part of the nail and that is very uncomfortable. Mind you,
I am always having the most P trouble with my hands- I use steroids and anti
fungal and anti bacterials on them or they won't heal. I am also very
vigilant about keeping them clean and moisturized. They drink and drink it
up, I tell you. Guess I have wooden fingers instead of a wooden leg!
Despite my vigilance with the good care and my taking Arava, (I too have seen
a resurgence of the P now that I have been on Arava over a year- though not
to it's worst ever), I sometimes need steroid injections directly into the
fingers, and palms. It is the worst
torture I have ever experienced - and I have had major major surgeries. This
past year the doc came up with the brilliant idea of his nurse spraying a
freezing solution onto the finger as he injected and that helped a bit- but
even so, it is something I hate!!!!
Michelle

I enjoy Off topic postings as much as you all,
laughter is the best medicine.
However in the interest of keeping everyone happy, I want to gently remind
that the "OT"
should appear in the subject line of all off topic postings. In addition, I
think we need to consider keeping off topic postings down to
a couple per person per day....
I do not want to discourage, just to put the brakes on a little...
Thanks,
Michelle
Your humble List owner/founder

I was wondering if anyone has a sore tongue with a white coating on it- could
it be thrush?
That would be like a fungal infection, and I think can be simply treated with
either a swish and spit med or even a pill these days.
Check it out...

Hi Janie
I e-mailed Oprah again last night, thought I would keep the pressure up!
Having noisy parts is not really a problem, unless we are unfortunate to all
arrive in the Arthritis Ward at the same hospital. Do you think we would be
able to sleep, click, crunch, hiss?
Love and God Bless
Gillian

Hi Margaretha
I usually use "Blue Tack" on my nails, as the pits require filling before
the varnish is applied. Well it was a good theory, however trying to plug
the pits was time consuming. So I resorted to plan B, do not bother with
varnish. Problem solved!
Love and God Bless
Gillian

I forgot to mention earlier that I got the same standard "thank you" from
Oprah's staff that someone else did. I think I'll write again and suggest they
"lurk" on our site and check out the Nat'l. Arthritis and Nat'l Psoriasis sites.
As to our bodies creating symphonies, when I was about 18, long before arthritis
was even in my vocabulary, I was on a blind date in a theatre in downtown
Atlanta. Very impressed with the good looking young man. We of course, sat in
the balcony. When exiting down the several flights of stairs, he thought there
were crickets in the stairwell (he could hear this above the din of the crowd).
I did not tell him it was my ankles. I was mortified!! Of course age was given
me a much more humorous perspective on the subject. Who cares how much noise
they make as long as they still move!! Right?!
Janie Howington
jhowing@...
janiehowington@...
770-923-4885;770-789-6194

In my preparation to go on my trip I have been seeing all my doctors
this week. This AM I saw the rheumy and considering the fact that I
have begun having problems again with my p (it has been 2.5 months off
of mtx) he is putting me on Prednisone for the couple months I am away.
I also am taking 400mg of Celebrex daily. I have heard a lot of talk
here about Prednisone and regret that I did not pay close attention.
Anyway, it is a very small dosage and he says that it will not cause me
any harm for a couple of months. Then he says to see him as soon as I
get back and if things are not improved I need to revisit the mtx
issue....*sigh*. Well, it was good while it lasted...
Gillian, I have not tried EPO but will certainly do some research into
it. I have other medical conditions for which I take meds and I am
always weary about trying anything other than what my doc prescribes. I
have great faith and trust in them and have much success with the
treatments they prescribe. My motto: If it ain't broke, don't fix it!
Oh yeah, and the other one I like: When in doubt - DON'T!
Gillian, I hope I can meet up with you while I am over in your neck of
the woods. I think we could have a good chat and I would love to meet
this Hermes!
Ciao for now!
Janet

Dear Mo,
Is there a chance you can discuss trying Arava with your rheumatologist?
Some on the list have been able to get allowed the prescription
when the doctor characterizes their condition as sero-negative rheumatoid
arthritis.
Many have reported that it works excellently on the joints and just as well
on the skin- which is unusual for a DMARD. It is similar to methotrexate, in
as much as it is an antimetabolite, and it is a problem for "childbearing"
plans.
Just a suggestion,
Michelle

Hi everyone,I live in the U.K. about thirty miles from London.I first got P in
1979 on my elbows and knees. The trigger being my divorce.Things then stabilised
for around the next ten years. Over that time I used various coal tar
treatments.Then first my finger nails and then my toe nails pitted and then
thickened.My toenails also started to grow upwards.
Then PA started in the joints of my fingers. My Doctor sent me to see a
specialist who prescribed anti-inflammatory steroid pills.These pills disagreed
with me but the three alternatives I tried all changed my personality.I didn't
realise but my wife could see a change in me I was getting all depressed and
miserable.So I gave them up.
Then the P spread to my scalp and genitals.I tried Dovonex for a while and at
first it was good but then it made me scratch more so I gave that up.I use
Capasal on my scalp I don't think it does a lot of good though.
In 1992 I turned to Homeopathy and go to a Homeopathic Hospital in London on
the NHS twice a year. Since then my nails have slowly got better my joints have
got no worse but the P is slowly getting a bit worse each winter. I also use
products from the Dead Sea. Bath salts, mud soap various moisturisers and
lotions to try to keep my skin moist. That's all for now Philip Brown.

Hi Kelly
Well did you ask the Dermatologist where your Tongue had been without you,
Ireland, England, Africa or Australia?
Love and God Bless
Gillian

Hi David
I can assure you David the LAST person I would want to contact is Jerry
Springer or Ricki Lake!
Love and God Bless
Gillian

Hello PA'ers,
How much I enjoy all these funny and positive messages
of the last days.
I hate to bud in with a query which worries me stiff.
For many years I have had P all over my body except
for my scalp and nails (yes, lucky me).
Now for a whole month I had a clean skin and lovely
slim fingers to the extent that I even grew my nails
and varnished them. Then last week I looked and
thought that I should have pushed my cuticles down
before painting the nails. Some days later I removed
the varnish and discovered that, there, where the nail
starts to grow, I had a thickish rim with around it
spots like little dents.
I immediately put Dovonex on them twice a day but
please, somebody tell me that this is NOT
nailpsoriasis! And if it is what have you used that
does not contain steroids.
Another subject; all you preggy girls are absolutely
right that PA has to do with hormones.
When I started the change of life, from one month to
the other I swapped aunt Flo and a 24 year-old
migraine for PA. I still don't know what is worse.
a good thing we don't have a choice.
Greetings.
Margaretha.
Tu correo gratis en MixMail http://www.mixmail.com
Inicia tu navegacion en http://www.ya.com

Just thought I'd add my experience to the mix. I developed P during my third
pregnancy. Just before the baby's first birthday my tongue started to look
really strange and the P was getting really bad so I went to the derm. He said
the tongue problem was "Geographic Tongue" Weird, huh? He also gave me a
topical cortisone for the P, which I used for a month or two,then read the
package insert and quit using it because i was still nursing. then the P really
flared and I started having PA symptoms, but of course I didn't know that PA was
the problem, having never heard of this lovely disease before in my life. I
have been trying to figure out why the arthritis would go into remission during
pregnancy for some though. I have a friend who has fibromyalgia and she has said
that she felt her best during her pregnancies...there must be something to it.
Take care, kelly

Hello,
I spent my morning in the ER. I was on my way to take my little
ones to physical therapy and my heart decided to have an aerobic
work out with out my body! I have tacacardia. The doctor
changed my medication and I have been having some trouble with it
racing. But I did not go to the doctor because #1 - I am busy
and #2 I normally do not feel good enough to go anywhere. I
guess that brings up the question - why would I drive 20 miles to
take my little ones to the PT and not drive 2 minutes to the
doctor to get my heart checked. I guess the answer to that is I
forget that I need to make sure I get what I need so that the
family gets what they need.
So I got 15 miles there and had an attack. My heart was ready to
run away without me! I pulled into a gas station and told my
daughter to call 911, by that time I could not breath and I was
going to pass out. The ambulance came and put me on oxygen and
an IV, and a an EKG. My heart was dancing around at 165 and boy
was I feeling BAD! At the hospital they gave me meds to slow my
heart down. I am very tired right now. So I will be seeing a
cardiologist SOON! I have had heart problems since I had my
first daughter at age 20, I am 36 right now. If I had my choice
of PA or the heart problems, I would take the PA any day. The
heart problem is frightening!!
I needed the good laugh from my previous post of "where's my
teeth!"
Lee Ann

Hi Petra
knee that clicks & an elbow that grinds. My word, I'm practically a
one-woman band!!!!!! <
Well you are ONE person I will refrain from sitting next to on the Oprah
Show! You start the song off and we can join in on the Chorus! Deal?
Love and God Bless
Gillian

Vicki,,,you are so right...I tell my RD that my arthritis is much worse
related to cycles..and he says, "NAH"....well I want to poke him......it
is true...For example, I am due tomorrow...and today I can hardly
walk.....so we obviously (and vets) know better!!!!!! Jayne

Hiya everyone.
Shelli,
So great to hear that your PA went completely into remission during 2
pregnancies - my partner & I are trying for a baby & thought I would be
more or less crippled for 9 months - how great to hear that this isn't
necessarily the case.
David,
I also find that sunshine works for me. After my 2 weeks in Greece last
summer I felt like a new woman - PA more or less vanished - swimming
every day probably helped too - & cold wet weather does normally make me
feel worse (or is that in the mind do you think?).
Amy,
thanks for the advice about Ambien for sleeping problems. I am taking a
herbal remedy at the moment, but it doesn't seem to be helping - I'll
give that a try if my sleeping doesn't improve.
Gillian,
Just to let you all know I think I could probably audition for the
percussion section too - I have a left knee & jaw that crunch, a right
knee that clicks & an elbow that grinds. My word, I'm practically a
one-woman band!!!!!! Also got myself some Evening Primrose Oil today -
will keep you up to date with any improvements.
Your 'In & Out of the Windows' story made me giggle as did Chris's story
about the icy driveway. I managed to get stranded in the bath the other
afternoon for about an hour after the water had cooled considerably!!!!!
The boys had come home from school & I was REALLY stiff so decided a
hot bath & a good book were in order. So, left the boys watching TV &
went & had my bath. Could I get out again????? I could not!!!!!! I
tried everything - pushing up with my arms (but my shoulders locked)
rolling onto my knees (but I can't kneel) pushing up with my legs (knees
locked) etc, etc, etc ...
Anyway, by this stage I was getting fairly frantic thinking that I was
going to freeze to death in my own bath, thanking God that it wasn't
window cleaner day & wondering if I could possibly ask my 10 year old
son to help me out of the bath - the poor kid would have been
traumatised for life!!! Realised anyway that I had locked the bathroom
door & couldn't reach it from the bath. In the end I managed to haul
myself out using the shower curtain & jamming my feet against the side
of the bath. What an afternoon that was!!! Understandably, I have
stuck to showers since then.
Got myself stuck in the car the other day too trying to slide over from
the passenger to drivers seat (gear lever & hand brake managed to get
tangled in my skirt) but that's another story.
Best of everything to you all,
Petra.

Hi all,
Thanks, Cher-- There sure seems to be a lot of PA fairly equally
scattered about Pa, especially around pregnancies!!! I have been thinking of
taking a road trip this spring (if I can sit that long) to explore my old
favorites--- Reading outlets, Lancaster outlets, Shady Maple Market in New
Holland, , past all the beautiful farms, then on through Chester Co back
roads and checking out the QVC outlet in Frazier. -- sorry folks, I was
just taking such a nice mental trip- it is snowing again here in Wi and
feels to be a "bad bone" day, so my plan is to "bury in" like a tour guide
in a New Orleans bayou told us that the alligators do for the winter!
Ta ta / Nancy in Wisconsin

Hi LaRita
I am really starting to feel sorry for Oprah's sound crew. I know her
lighting director won a Emmie, as apparently Oprah is very HARD to light for
television. Now with US in the audience creaking, hissing, ticking and
cracking, the poor sound director is going to have a challenge and a half!
Mind you I reckon Oprah will see the funny side!
I was thinking back to my problems in 1993. I was on Sulphasine, Indocid R,
and was vomiting. It was strange because I would have dinner at 6pm, then at
8pm would feel nauseated and usually before I made the sink, or toilet, that
was it! Considering I had two hours to digest my dinner, I found this reflex
strange. This went on for three months, I lost three stone in body weight,
but no one knew WHY!
It does worry me that once you are labelled with a condition, all other
symptoms are lumped in under that label. So no, I do not think you are on a
soap box, I think the point needs to be made!
Love and God Bless
Gillian

Hi Wendy,
I have tried everything for my psoriasis...to no avail...aloe does
little but does help with the burning. Shamong is very close to me..I
have a couple of friends there and it takes me about ten/fifteen minutes
to get there. I am a firm believer in the fact that my pregnancies had
something to do with this pa process...maybe I am crazy...but it is just
so weird. I am currently on anti inflammatory Daypro, and Ultram for
pain. I take several tylenol to jump start the meds....it really
works....when I do that.
My kids are age 6 and 4...both boys...very active boys. I find the sun
is the only thing that really makes a difference in my psoriasis so I am
patiently waiting until summer....Nice talking to you, and feel free to
email me personally.
Take care, Jayne

Hi Bunny
Geeeeeeeee what can I say? Thank you for the information on Shoulder
replacements, but they are going to have to catch me first! I had enough
weird looks from the FBI/CIA at Chicago airport on my last visit, just
because Henry was lurking in my flight bag. Imagine going through all that
scanning with a new shoulder. Coming for Ireland I bet they would have
serious problems with my clearance!
scratch your back for the first time in years<
And how I love to scratch my back and brush my hair, its tempting!
Love and God Bless
Gillian

Hi Nancy
Well if Oprah replies and we get to do our thing on National Television, why
not have a BAND. I think we had better start practising the Oprah Song!
Love and God Bless
Gillian

Hi all!
My name is Charise and I was diagnosed with PA in December. I
have a family history of RA, but when I started having problems
with tendonitis in my hands, wrists and forearms my doctor thought
it was just tendonitis. I have had carpal tunnel, and after surgery
my symptoms got better. The doctor told me that they had to
remove a lot of tissue from around the tendons in my hands! All
my blood work kept coming back negative, sed rate, lyme disease,
ANA, RA factor....all negative. I finally saw a rheumatologist who
diagnosed me and immediately started me on methotrexate.
I am newly divorced, going to law school and living 500 miles from
my closest family. I don't have a lot of friends here and am having
a lot of trouble dealing with stress and my inability to do things I
want to do, things I use to do.
I hope to get tips for handling stress, daily living with limitations
and pain, and handling the side effects of my meds.
Charise

Hi Mo
Food for thought. If we did get a band together, would we need to import
stairs on stage? If so how fast can you ascend/descend, four beats to the
minute???
Love and God Bless
Gillian

I just thought I would add my 2 cents on these subjects. I was born & raised in
southwestern Pennsylvania (Johnstown area). Lived in Indiana, PA for ten years.
It
was during that time that I had my first child and developed psoriasis on my
scalp soon
after the pregnancy. Moved to southeast Pennsylvania (Lancaster area) 3 years
later.
developed P.A. immediately after second pregnancy. Not planning anymore
pregnancies-
I'm afraid to think about what might happen to me afterwards!
PACher

When we need cymbals for the band I can add extra loud CRACK
noises with my jaws! Fortunately, since surgery 18 months ago,
the cracking doesn't hurt as much as it used to! Someone
mentioned we are all so musical. COOL! I've always wanted to be
musical. Can only sing if I've had two glasses wine (and an
indulgent- or tipsy- audience. Always wanted to play an instrument
but people who still use outhouses can't afford lessons. (That's
another story--yes some still use outhouses in American in the
21st century) I enjoy hearing my teen play her flute. I feel
successful vicariously!
RE: someone said they have an upset stomach, vomit, etc almost
daily. "All those pills" is not an acceptable answer. Through this
list you will meet lots of people on "all those pills" and vomiting
daily is not the norm. I just went through this and a
gastroenterologist (stomach specialist) did a few tests and found
out my stomach doesn't empty properly. This results in nausea,
vomiting, and ultimately malnutrition! "All those pills" can certainly
add to the problem but it is a separate problem that is treatable. It
is called (Come on, everyone now...) gastroparesis. I have been
complaining on hear to anyone who will listen because I can't take
the drugs that help so I am having problems with no options.
MAYBE YOU CAN take the pills. Most people can and the
problem is controlled. You might not have this problem but let it
serve as a reminder that whenever we experience new problems
that persist and hamper our quality of life we shouldn't be ignored
and told it is "all those pills" or "must be arthritis". We deserve to
be treated to diagnostic procedures just the same as anyone who
doesn't have other problems. (Getting down off the soap box now)
Robert--nice thing to do making the effort to check out who is down
under for the newbie.
Janet...I'm sorry to hear the PA is gone awry. Hope your doc finds
a way to help you stabilize before your trip. If not, maybe you need
a companion. (hint,hint)
Anyone remember the Dark and stormy night saga on the old PA
list? Maybe Pat B. was there. Anyway, there was a continuing
story there that everyone could contribute to as desired. There
was a funny storyline about having PA feet and trying to buy
shoes. Gillians stories remind me of that humor that we shared
back then.
Gotta run. (as if I really do THAT) La
Thought from LaRita
There are years that ask questions and years that answer.
Zora N. Hurston

Hi Chris
Reckon the rest of the membership are relieved that they are NOT living in
out neighbourhood!
With me jumping out of the window and you mooning, someone would commit us,
that is a fact.
The weirdest events that has even transpired, happened at 3am in the old
home, Rural Kerry! It was during the time when the arthritis was 'at me' and
I was bombed out on pain killers. One of the first items I purchased was a
'security light', which I installed over the garage. The entrance to the
homestead was from the drive, so any visitors would illuminate the entire
homestead. The street lighting stopped at Tralee, so it was fifteen miles of
BLACK OUT. Anyway with the condition I was up, sitting, bed rest and pacing
the home. I eventually nodded off at 2.30am, only to be stirred by a rather
loud scraping noise. My bedroom was at the front of the bungalow, so I
looked out the window to see what was going on. All I could see was
headlights and thought their had been a serious car accident. So I donned my
mauve bath robe, over my teddy bear printed PJs and struggled to put my red
frog wellington boots on. I existed the front door, walked towards the
garage and the security light came on. I then walked up the drive to the
narrow country road, where I observed three hunks burning themselves with a
white hot car exhaust pipe! Seems the exhausted had fallen off the car, the
entire exhaust, from the engine to the tail pipe, and was jammed under the
car. The men were trying to free it, but it was HOT! They witnessed the
security light ignite and with it beaming from behind me, no doubt thought I
was Dracular!
As I approached to offer my services, one man said, "I am sorry did we wake
you?" My mind sifted this Irish Logic! Here I was in my teddy bear PJs, with
Mauve bathrobe and frog design wellingtons on at 3am and he wants to know if
HE woke me?
I just replied, "No, actually I am just off to a Pyjama Party!"
Love and God Bless
Gillian

To David
Well when this idea broke, you were off in Paris playing with Mickey Mouse!
I assume you would be willing to travel to Harpo Studio Chicago, if Oprah
invites us????
Love and God Bless
Gillian

Hi all,
The National Psoriasis Foundation puts out a newsletter each month, I have
been a member for years- it goes out to thousands all over the world. I also
know they put newsletters on the web, so I am assuming that their site will
have the article.
About giving up on methotrexate at a 20 mg . level dose. I am not saying
that this is right for you, for I am not a doc, however, I myself and many
others have taken up to 50 mg. of Metho
a week by self- injection. Mind you , you will probably need a prescription
for the anti-nausea med Zofran- essential to take before the shot, and you
will probably need to be sure to take your folic acid too, as you will be
more tired than ever, etc...
With my doc the rule of thumb has always been to play out to the top each med
as we went along. We never know what may or may not work for each person-
and as Metho has worked in the past- it usually is a good bet.
Alas, it stopped keeping me in a good remission, so I had to go on to other
meds.
The other new med Arava is in the same class as Methotrexate- but it has
fewer noticeable side effects- it is a small pill you take daily.
No nausea, no fatigue- and it works really well on the psoriasis too. Of
course the long term effects on the liver are always the catch!
Hope this helps.
Michelle

Hi David
Did you check out Mickey's chest and was it hairy?????
They did think about building Disney World here, but the Leprechauns and
Fairies said NO!
Geeeeee bad enough that I have to put up with the Leprechauns and Fairies
arguing all the time, but to have Mickey and Pluto on top, forget about it!
Mind you, when I was in Los Angeles, we stopped to give Mickey a lift, seems
he and Minnie has a slight altercation.
Love and God Bless
Gillian

Hi all --
Just writing to remind you all that I will be hosting
a PA chat tonight, Monday, from 7-8 PM Eastern on
www.drkoop.com. Just go to that site and log in under
"Physical Conditions." Some people have had
difficulty with this before but I am assured by the
drkoop people that the system should be up and ready.
"See" you all tonight!!
Robert, Jersey Highlands
raharris@...

Hi Mo
Now is the noise a crunch, or a click? Very important, as I hiss and LaRita
ticks, so you will have to join the percussion section as a what, crunch or
click?
Love and God Bless
Gillian

hi, it's mo...i'd like to audition for the band...the crepitus in my knees
is so loud as i go up and down a flight of stairs that it took a bit of
detective work on my part to realize where the noise was coming from . i
could hear it loud and clear and didn't realize i was the culprit. i would
stop and cock an ear in an attempt to locate the
sound...NOTHING!...everytime i started to move again the crunch crunch
started up. I lifted my shoe and checked the sole, checking first the right
and then the left, NOTHING! finally i realized that with every bend of the
knee to the step i was playing a tune...there is no pain, just a pulling
sensation...however, when i hit the hay both knees ache so much that my
roving heating pad parks between my knees for a while each night for some
relief. i'm still just taking indomethicin sr 75 mg every 12 hrs. for the
pa and this wek saw my dr. and was informed that this mess i call my nails
is indeed invaded with p...will check with derm but says he feels there is
little he can offer.i told him i want a new rheum and he is willing to
refer if/when the time comes for dmards...my good days still outweigh my
bad days i think except for the overwhelming fatigue...i'm bummed about the
nails because working with them in this condition is painful and my job is
physically/mentally grueling enough....long winded tonight, sorry, feel
free to edit....mo

Hello all you lucky folks. a 33 yr. pa 20+ yr. avoiding certain foods helped me.
I guess I'll be a lurker; I said too much any way. Why do you guys wear splints
and how? No doc now.

Hi Jayne--- my fingers are ok- started in my wrist and great toe joint more
like a bunion-- and lower back as well. You are not alone
Nancy from Wi

Hi Karen,
I lived in southeastern Pa when the P started, progressed, and then PA
started about 5 yrs later while still there. Now living in Wi, where the
PA was finally diagnosed. Seeing the #'s of postings comeing from Pa, either
makes me miss it, or wonder why there are so many of us from there with PA.
Nancy from Wi

Hi Jayne,
Feels like old home week for me--- noticed your response to Wendy as
well---- Though I,ve lived in Wi for the past year and a half, used to be in
Chester Co Pa and worked in Plymouth Meeting-- very close to Conshohocken.
Small, small world!
My daughter has a friend who's PA started big time after pregnancy.
Nearly disappeared with pregnancy #2, then returned with a vengeance
immediately after. It would be interesting to get some statistics, huh?
Myself, having nearly grown children by the time it started, thank
goodness but it did start during a time of big change in my life.
Interesting. Lets get some feedback
Also, please tell me when the azaleas and dogwoods start blooming---
don't see many here!
Nancy from Wi

Hi Michelle,
Thant is great. All the more people that know about this group, the better.
It is such an important part of our lives, for friendship and support, not
to mention great advice and the laughs we get from some. I look forward to
reading the article. Where and when will it be publishjed? Please let us
know where we can read it.
Angela

HI,
I'm just wondering how many of you pa'ers are from
Pennsylvania?
Any close to Pittsburgh?
If so, who are your rheumies?
You can email me direct.
Thanks
Karen

Hi PatB
I found your encounter with sister interesting to say the least!
gave away my dogs<
When I erupted in P at 16, no one in my immediate family comprehended. The
cycle of WHY stretched from not having a daily shower, to scratching myself
during my sleep. It was as if I was a family genetic runt! Even while on
holiday here, Aunt Pidgie marched me down to the family doctor, because the
blame was NOT of her genetic make-up! Moms side of the family were healthy,
so it HAD to come from Dads side of the family!
We then went through everything from brands of deodorant to brands of
clothing.
When I just about had all I could take, my Father just said, "Well Gill the
badness has to come out somewhere!" However deep down HE could NEVER except
one of HIS children having, a skin condition.
When the arthritis erupted its Ugly head, I went through the same blame
cycle with my sister. You smoke, while she had stopped, but now drinks
instead. The way I dressed, the way I spoke, you name it, she was searching
for a reason, besides the obvious, I have a genetic susceptibility to PA!
Then with my divorce, well "What do you expect" was her attitude! The day I
returned from my initial Rheumy appointment, she asked me what he had said.
When I replied, nothing, he seemed in a bad mood, gave me this leaflet and
injection, she retorted with, "It is YOUR attitude!"
However that suddenly changed when she had a jaw replacement operation.
Suddenly the dawn broke and she realised what it is like to see a
specialist! She was due to have the other jaw joint replaced, but has
REFUSED to return!
I am always amazed at what garbage my sister comes out with, she is older
than me, but I believe I reached maturity before her. Sister is incapable of
dealing with any family problems, my divorce, the fathers demise, my health,
you name it.
I do not think education has anything to do with it, but when people do NOT
know what to say, but feel they have to say something, I am stunned at what
they come out with!
As I said before. Here when a person dies and is laid out in the coffin,
everyone will comment on "How well they look!" That is why I state this is
"Irish Logic!"
Love and God Bless
Gillian

Hi Wendy..I am from New Jersey...we can say we are practically
neighbors...no what part of PA? My husb works in Conshohocken...and
area...welcome to the group. I am 34 and have had p all my life
also..it was always controlled until my first pregnancy..then BOOM!!
Practically my entire body was covered...now I only have problems with
my palms/fingers & feet. My pa is only of the spine. Again, came after
my second preg...I swear the preg did all this to me!!!!! For alot of
reasons...I have never been the same after having my boys...who are now
6 and 4.......They really did a number on me....but they are my most
precious gifts...and the true definition of unconditional love....Take
care,
Jayne

Hi Older Dan
I try to keep a positive mental attitude due my my condition. Now I read
that you have not got a hairy chest, well depression has just set in. Why
could you not tell a little white lie, just to keep ME happy?
I was their, I had dived into it, I was rubbing the cream in and giving your
chest a perm to boot. Now what do I dream about?
Love and God Bless
Gillian

Hi Michelle
I heard a news report from America on BBC Radio 4 about people 'stalking'
the Internet, is this the same?
Love and God Bless
Gillian

Hi Michelle
us on the list and that our list has been alive for 437 days now and that we
cover the globe. <
Well I have been alive for 15, 327 days now, so I suppose I have done well?
Love and God Bless
Gillian

Hi all! I'll be "older Dan", so there'e no confusion with new guy Dan.
Just a few words on MTX. I had increasing pa for 5 years or so, finally
building up to my feet joints blowing so walking was impossible. Being in the
construction field, desk work wasn't an option. I toughed it out for a few
months on basic nsaids, but finally scheduled a heart to heart with my new
rhuemy. He outlined the pros and cons of mtx in just a few minutes, the
encouraged me to do some research on my own. To shorten the story, I started
mtx, at 2.5mgx3, once a week. Hurray for modern chemistry! In a few short
weeks, I started to feel better, and in 3 months, I joined a softball team.
Life was good. Fast forward 5 years, bad liver scan, Have I been drinking
alcohol? Bad Dan!! Do you want to risk your life for a few drinks? I gave up
alcohol for good, no more bad scans in 6 years. I resist any increase in
dosage, instead try newer nsaids as they become available, and light pred when
major blows occur. I have a few other problems other than pa, but not related
to mtx.
Sorry to be longwinded, and to Gillian; not that hairy.
Older Dan

If someone is successful with Oprah, she usually pays for plane tickets and
hotels for all the guests. Be sure to mention to Oprah that there are 260 of
us on the list and that our list has been alive for 437 days now and that we
cover the globe. \
Michelle, List founder

Hi all--- fyi on the different back related specialists:
neurologists- are often consulted as part of a diagnostic process to
identify conditions arising from pressure on, or damage to, nerves. When
looking specifically at the back, for "radicular" damage arising from
spinal nerves causing pain , loss of sensation , or alteration in reflexes,
bowel or bladder function
orthpedic surgeon- deals with anything pertaining to the musculo
skeletal system or surgery thereof- may will have a sub specialty in spinal
surgery as well. Orthopedists are about the only surgeons that can do
spinal fusions, but may also do laminectomies, discectomies.
neurosurgeon-- able to do any nerve related surgery, including the
spine, (discectomies, laminectomies as well--- however, if a fusion is
required, will need an orthopedist to do the fusion part

Hi David
Spondylolisthesis?
Check that one on your Microsoft Spell Check!
According to my medical reference books, "A forward shift of one vertebra
upon another, due to a defect of the joints that normally bind them
together. This may be congenital or develop after injury!"
Well the Doctors would be diverse in their opinions on what to do. If it is
not causing a BIG problem, then they will leave well alone. On the other
hand if the vertebra was crushing the spinal nerves, well they would
operate. Sometimes it is not advisable to jump in, just because the patient
has a problem. I have lumbar scoliosis, or kyphosis, a sideways deviation of
my spine. It is easier to explain it like a tent guide rope. You stick the
tent pole up and hang two guide ropes from the tent pole. One you hammer in
to the left, the other you hammer in to the right. You then make sure you
have equal tension on each rope. If one rope snaps, the pole will fall. If
one rope is slacken off, the pole will lean to one side. As the arthritis
mainly affect the right side of my body, the lower spine is twisting,
because the muscles, rope are weaker , slacken off. Does it cause me any
problems? Well correspondingly my right ovary is twisted, so if I want
children I would only be fertile every other month! My right leg is slightly
longer than my left, I have a effusion on my right knee and now and again I
walk with a limp. I also find stairs or any rough surface hard to walk on.
My pelvic floor bone is also lower on my right side than my left, but that
would only be a problem in sexual relationships or giving birth.
They could jump in and fuse my lower vertebra to stop the twisting, but as
it causes me few real mobility problems and my body has adjusted, why
bother? However if I DEMANDED they do SOMETHING, no doubt they would operate
tomorrow!
Much really depends on how this spinal problem is affecting your life.
Love and God Bless
Gillian

Hi Vicki,
Thanks for the info..the orthopedic sent me to the reumatoid dr...was
baffled about my pain and seeing the discs looked completely
normal..sent me away......I did go from dr to dr, hoping all the time
they never thought I was a hyperchondriac....the pain is real...and
seriously puts a damper on my somewhat "nice" personality. When I am in
agony...I can be such a real b........not meaning to of course. It just
hurts so bad at times and dr after dr, guess after guess gets
frustrating. I sometimes want my fingers and toes to start hurting so
I can be sure and not feel like freak. Having back problems is the
worst. Some people take it so lightly.......Since half of the world
gets back pain...Well they don't get pain like this.....
Jayne

Does any know of anything about this? How it could help and also how it
seriously it is? What would you recomend besides "ask your doctor" ? We have
been to several already and they all are giving us different stories. If you
have had experience with this Spondololithesis, please reply.
David

Hi Michael, no I have never been examined by a spinal
specialist..however it was never recommended..maybe I should look into
this one. My mris of two years ago were basically normal..some
abnormal signals in the lumbar region (if you understand that talk). I
am due to have them repeated this month. I have been examined my an
orthopedic specialist, is this the same? I would love to jump for
joy...it's been a long time for jumping for me!!!! I told you guys, I
am not the "classic case" on here. Most of you have your small joints
involved, not me! That makes me an odd ball!
Jayne

Hi All
I only wish I had a laser scanner.
Do Rheumatic diseases interfere with a couple's sex life?
On the whole the answer is NO, unless psychological factors interfere, with
physical consequences.
First what is a normal sex life? Some recent studies of human sexual love
have concluded that anything is normal as long as it is practised by
consenting adults. There is a great range of richness in attitude to sex
amongst men and women. The frequency of intercourse, the time of day, the
circumstances, all differ remarkably: for some couples twice a day is
normal, others once a month or less: some are only aroused in the mornings,
others at night in the dark. [Rheumatism and Arthritis ISBN 0-330-31842-X]
Under that text is a cartoon. This shows you the top of a couch, with an
assortment of arms and legs protruding. In one hand is a book entitled "Kama
Sutra", while the other hand is reaching for the shelf to remove the "First
Aid" box!
That cartoon just about sum's the subject up for me!
Love and God Bless
Gillian

Hello PA'ers,
I don't understand much about politics and less about
the foreign varieties but to-day I read an article
in "Time" magazine (febr. 7-2000) by Donald R. Barlett
and James B. Steele.
It seems that in the United States wealthy individuals
and businesses can pass or change laws by
a) contributing to political campaigns;
b) spending generously on lobbying.
Their "proposal" is then hidden in a "nice" bill that
everybody likes and passed.
Now all this would be none of my business as I don't
vote in the U.S.A. and we have enough political dirt
in Spain to take anti-emetics for a lifetime, were it
not for the following.
I quote from the article.
<<<A LONGER LIFE FOR GOLDEN DRUGS.
Major pharmaceutical companies will seek
legislation to extend the patent life on their most
valuable drugs. In the past, such giveaways were often
inserted into unrelated legislation and covered a
single drug or two. But this year watch for heavy
lobbying for the granddaddy of all patentextenders. It
would protect pharmaceutical company sales of $3
billion annually and add years to the profitable list
of at least seven expensive drugs, such as Schering-
Plough's Claritin for allergies and Eulexin for
prostate cancer, SmithKline Beecham's Relafen for
artritis and G.D.Searle's Daypro for arthritis. The
big losers: patients, especially senior citizens on
fixed incomes, who must buy expensive prescription
drugs instead of cheaper generic versions. Estimates
of the added costs run from $1 billion to $11 billion
over the next decade.
After heaving read in our list so many heart-breaking
stories of friends who cannot pay for their medicines
I wonder if you could not do something about it.
Maybe going on Oprah's show would be a wonderful
opportunity.
Greetings.
Margaretha.
Tu correo gratis en MixMail http://www.mixmail.com
Inicia tu navegacion en http://www.ya.com

I've been reading the postings on this over the last several days, and must
say I'm glad someone was willing to bring the subject up. I was wondering
about this myself, as I've experienced a definite slowdown of my own.
I've always had trouble with getting interested when I'm stressed out or have
a lot of things on my mind, and this has seemed to multiply with the flare
ups of PA. It's not so much the pain, because once I get interested I don't
have much problem with the pain and what I do have I'm certainly willing to
ignore.
I think it's more a combination of fear of pain, self-consciousness about my
body - just feeling unappealing due to flare ups, stress over the things I'm
not getting done in my life, fatigue - just wanting to go to sleep!, and
guilt over not being more interested in sex. That's probably the worst one,
because it's a real catch-22.
This is from a lot of introspection on my part. I wouldn't say I'm
depressed, but PA definitely takes a toll on how you feel about yourself.
And this is a critical factor in being truly intimate with those you love.
The hardest thing, but probably most important, is to talk about how you
feel. This can over come a lot of misunderstanding and perceptions. I won't
say I've done real well on this one myself, but I'm trying. My husband tries
to be understanding, but I know my lack of interest takes a toll on his
self-esteem too.
I was kind of using the PA as an excuse in my mind, but in reading these
postings, I've realized that whatever the reason, I can't let it control my
life. I've got to take charge, because this is an important foundation to
marriage. Not so much the sex itself, but the openness that comes with it.
So I need to make a conscious effort until it becomes natural for me again.
Because I do enjoy the intimacy with my husband. It's just an effort when
you are dealing with so many issues with your body. I know it's an effort
worth making! I've just got to convince my body!
I hope my thoughts help someone else. I've certainly appreciated everyone's
openness on the subject. Hopefully, I'll put these thoughts to good use.
Sylvia

Hello members,
I am thirty nine years old and live in Ontario, Canada. Three weeks ago I
was dignosed with PA. It was quite a shock to hear this but its good to
finally find out what was wrong with me. For the past 5 - 10 years Ive had
achy knees, big toe, and ligaments in my feet. I cant count the number of
xrays Ive had in the past 5 years. Ive always had the same answer from
doctors - "oh it must be a touch of gout". The rhumatologist figured out it
was PA in a couple of minutes. Hes got me on vioxx, which is working great.
Ill stay on this NSAID until the swelling in my little finger goes down. Im
a super active outdoor person who likes to hike, swim and ski and its
slowing me down a little. I think it will really help to stay active and
keep the muscles around the joints strong.
Take care, John.

Just wanted to comment on the use of dmards. I am 34 have had pa for
about two years (only of the spine) and have yet to try dmards. The
doctor has had me on anti-inflammatories since the beginning/and pain
meds when needed. He only prescribes them as a last resort. Now
understand, sometimes on a scale of 1-10 the pain is a 25...so this is
not a mild case. I don't think all doctors prescribe them in the
beginning....just a thought. Yes, I also know the dangers of long term
use anti - inflammatories...but there are risks also with the dmards.
All drugs carry risks. We must make our own decisions based on our
level of pain and the quality of our lives.
Jayne

Hi Marylyn
Welcome to Onelist. At the last count we have 260 people with the same
condition, PA! I am sure that the other members will reply, probably in
droves. As for information? Well the schools of thought on why we succumb to
P, stress, trauma, infections, which are the initial triggers to the skin
eruptions. As we then proceed with life, we throw an allergic reactions to
infections, which then bring on the arthritis. That is the nearest the
experts have got to a reason, plus a genetic predisposition to PA!
As for treatments, well here I believe we have a choice, depending on our
lifestyles. If you are employed, wish to continue, then I think the
conventional drug treatment is the way to go. If you are willing to put some
time and effort into your condition, willing to change your lifestyle, then
a few of us are able to maintain the condition via diet, exercise, positive
mental thinking, laughing and a few unorthodox remedies.
I have just heard on the English Radio, that some form of "Ginger Capsules"
are on the market. Apparently this treatment has taken America and Australia
by storm. I am just taking Evening Primrose Oil, but it works for me.
However I have changed my lifestyle dramatically, do not work and avoid
crowds for fear of contracting infections. However I am willing to do this,
as I know the consequences, flat on my back in bed for weeks otherwise. Been
their, done that, am avoiding returning at any cost!
It was interesting to listen to the "Arthritis Care" people in England, who
were saying that their motto is, "It may work for you so try it" They then
went on to say that patients are different, have different personalities and
psychology's, so what may work for one, can fail with another. They also
stressed that their is no CURE, but anything that relieves the symptoms is
worth a try!
I also think that getting through the sheer panic stage, 'my life is over,
why me, what did I do, will I end up in a wheelchair?' and accepting that no
one has a crystal ball, so cannot forecast your future, is a big step to
accepting this condition.
Well I hope that is sound advice and helps you.
Love and God Bless
Gillian

Hi All
I am having a day IN today, due to severe weather, or a storm.
So I had time to catch Oprah and was stunned by what I saw. This show is
probably a few years old, as we are somewhat behind here. The contents,
people who have been FIRED over their free time activities. So a Counsellor
working with disabled children posted some nude photographs of herself on
the Internet. Another lady did the same, and her husband was fired. A Police
women who used to be a topless dancer and a lady who was seen smoking a
cigarette in a Bar Friday night, while stating she did not smoke on her
application form.
I was then wondering about PA!!! I decided that you are damned if you state
you have PA on employment applications and if you do not state you have this
condition, they can fire you for NOT stating you have this condition.
Catch22!
It also seems that different STATES have different employment laws, just to
add to the confusion!
Love and God Bless
Gillian

I was just told that I have psoriatic Arthritis. I would apreciate any
information on PA from anyone who has it too!
Thanks All

Hi All
Hi all,
I also e-mailed to the show after I found the address. I am in Canada and
didn't have any problems.. The more people that e-mail, the better. I also
told them about one-list. Maybe we';; hear from someone at Harpo soon!!
Angela

My server has had problems lately so this may be late, but I thought the Oprah
idea was wonderful and tried to send a message to Gillian with no success, so I
just went ahead and wrote Oprah too. I'd be willing to do the show too.
Janie Howington
jhowing@...
janiehowington@...
770-923-4885;770-789-6194

Hi All
Well I posted to BOTH WWW sites, Oxygen and Harpo! Now if anyone knows the
POSTAL address of Harpo, then I could write as well!
Love and God Bless
Gillian

Okay - count me in too. But we need a clause in the contract for airline
and bed/breakfast too. Sorry but my meds cost me so much money I can't
afford the trip any other way. My insurance just doesn't cover like the
last one I had when I worked for the Union but then outside insurance never
was as good. Course the positive is that I am still able to work (with a
great deal of difficulty) and have insurance at all. If I had to go on
disability, I couldn't buy any meds at all because Medicare doesn't cover
anything like that. So it's the rock or the hard place but I'm trying to
keep a positive attitude here.
As for the sex life I've been reading about lately - well - memory is the
first thing to go and I don't remember anything else after that LOL! I
think libido went first with the pains in the hips and lower back that
simply made me forget what that part of the body was capable of doing.
Okay - no more of that.
I'm currently suffering from yet another bout of bronchitis which means more
Medrol by injection, the Medrol dose pack and antibiotics along with
everything else. Still having to work on these shingles on my leg that I
have been treating since October and the doctor wants them gone before she
increases the MTX again. So it's a waiting game for me. Get a little
better and slide back 50 feet and have to start over again. At least my
arthritis pain is lessened with all the steroids this week instead of so
much DarvocetN100's.
Anyway, just thought I would jump in here since I haven't been able to do it
lately. I would ask for your prayers if you are so inclined - my mom has
cancer of the liver, just had exploratory surgery this past Friday, and the
prognosis isn't good. So on top of everything else, I have a lot of added
stress and we know what that does to p and pa don't we? Trying really hard
not to let it get to me.
Take care everyone. If I don't respond much to this list it isn't because
I'm not reading the posts - just rather involved in my life at the moment.
Peace and tranquility to all of you and my prayers for your pain to be
decreased as well.
Love ya
Helen

I WAS DIAGNOSED WITH PA ABOUT 9 YEARS AGO. I AM CURRENTLY 32 YEARS YOUNG.
I HAVE TRIED ALMOST EVERY NSAID OUT THERE. MY NEW DR. HAS TRIED VIOXX,
CELEBREX AND MOST RECENTLY AZULFIDINE. I WAS USING ORUVAIL UNTIL THREE MONTHS
AGO. I WENT TO THIS NEW DR. ON THE RECOMMENDATION OF ONE OF MY CLIENTS. MY
SHOULDERS WERE SO SORE I HAD TO HAVE MY 9 YR OLD SON HELP ME PUT MY COAT ON IN
THE MORNINGS. SHE DID CORTISONE INJECTIONS IN BOTH SHOULDERS AND MY RIGHT KNEE.
THIS STILL HASN'T HELPED !!! I WOULD LOVE TO GET OFF ALL THESE DRUGS.
AT THIS POINT I'M NOT SURE I WOULD HURT ANY WORSE. I'M OPEN TO ANY SUGGESTIONS
OR TREATMENTS THAT HAVE WORKED FOR YOU. MY ARTHRITIS IS MUCH WORSE THAN MY
ACTUAL PSORIASIS. MY SKIN LESSIONS ARE SMALL AND FOR THE MOST PART CONTROLLED
WITH TOPICAL OINTMENTS.
FRUSTRATED
DAN

Laurie,
I suffer from Disthymia. It is a form of clinical depression. It is
characterized by a low grade depression that often goes undiagnosed because
the person can function "out in the world" just fine. Many people suffer
with it for decades and can still experience more severe depressive episodes
on occasion. This gives the illusion that their "normal" state is healthy
so they don't feel depressed. Also, many men go undiagnosed with depression
because they find it difficult to tell their doctor that things at work
aren't going as well as expected.
In my opinion, you're husbands lack of interest in sex is more likely caused
by undiagnosed depression than by the PA itself. Pain and stiffness don't
bypass the hormonal inclinations, but altered brain chemistry due to
depression does.
Unfortunately, you can't get help for him. The only thing you can do is
share your feelings with him in a loving way. Open and hones communication
on your part with no expectations over time could eventually help him to
open up to you. Remember, he feels betrayed by his body and may have great
difficulty talking about it.
Also, we all need to remember that Love is a VERB not a NOUN. To love
someone is an action--one you take without conditions. Try it it is a truly
freeing experience.
Good luck,
Nancy in Virginia

To Dan
THIS IS SERIOUS<
Hi Dan
Now you are going to tell me you have a "Hairy Chest" and boy do I enjoy
diving into them!
Love and God Bless
Gillian

The Oprah Show would be a wonderful way to get the message out
there about PA! Come on Gillian, you have to convince them! I
know you an do it!
Count me in for a ticket...no problem getting to Chicago!
Linda
Poulsbo, WA.

To Margaretha
big dog and 11 cats; all spoiled rotten, plus 2000
square meters of garden<
Ummmmmm? Tell me, should you drop dead tomorrow, [I hope not but you never
know], who will take care of husband, a BIG dog and 11 cats? Unless you are
planning to take them with you?
mortgage to pay for a plane-ticket to cross the
Atlantic<
Well IF Oprah agrees and they want US, [perhaps we should put that clause
into the CONTRACT], Harpo usually PAY for the airline tickets.
Accommodation, well I am positive someone would put up two irrational,
deranged, insane PA club members?
See always turn a negative into a positive!
Love and God Bless
Gillian

To LaRita Jacobs
Hi LaRita
I never mind people stepping on my toes, although I will request medication
afterwards, ouch!
I doubt Oprah will respond to MY request as I live in IRELAND! Cannot see
the Harpo people bothering with "Outsiders!" Yes I think PRESSURE on them by
the patients with this condition, in other words we should all E-Mail asking
for the topic of PA to be raised, might just persuade them to do a SHOW!
Having been an accountant, well I am NOT going to invest cash on some ejit
from Ireland. However if a few hundred people in America write to the show,
well perhaps this would be worth investing in!
Even just the aspects of Living with PA, work, drugs, sex, you name it! I
reckon it would make an excellent show and heighten the awareness of the
condition!
Love and God Bless
Gillian

To Gillian.
I would love to come al