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Hi All
For those of you LUCKY people residing on the EAST COAST, yes you Robert, be
warned!
It is 6.30pm here and in about one hour I shall be exposing my body to the
Atlantic! I am taking Hermes to the beach and all being well intend to swim
with her.
However, the Atlantic might get a slight shock when it observes my torso, so
I expect a "Tidal Wave" to be heading in YOUR direction.
Do not say that I did not forewarn you!
Love and God Bless
Gillian

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Hello all,
Could it be that, when our feet and ankles hurt, we
walk with difficulty (waddle) and that puts more
pressure on our knees?
Since my feet are so much better my knees hardly give
me any trouble.
Just an idea.
Greetings.
Margaretha.
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Hey Mo....maybe try ice instead of heat...sometimes that works for
me....freeze that pain away....good luck..Jayne

Hi Mo
You say the knees are not swollen? Well MY knees are NOT swollen, I see them
everyday and they are fine. However, when I went to England to see the
Rheumy in 1998, my knees were fine, I thought. The report back read: mild
puffiness of her knees? To me they look like normal knees!
I agree I have an effusion on my right knee, but that is below the knee
joint on the inside of my leg. My left knee is NORMAL, honest!
This ache could be due to standing for long periods, which I understand
affects the veins. Well that is what they tell me at out patients, as the
seats are not patient friendly, so I always stand by the far wall. The
nurses say that standing for too long induces varicose veins? So far my
veins have not rebelled.
It could also be change of shoes, shifting the balance of weight. On the
other hand it could be like my stomach muscles. The knees are in remission
and now you are learning to use all the muscles that support the joint.
I know that my stomach had me out of bed at 3am, contemplating rushing to
ER, with the PAIN! I HAD to take a pain killer to get back to sleep. It was
Mom that said, "You were throwing the ball for Hermes, using muscles you had
not used in years!" Therefore I went threw my throwing action and the PAIN,
Mom was right!
Love and God Bless
Gillian

hello all...help....please that is. i'm experiencing bilateral throbbing in
and around / above and below my knees. this is new and i don't believe i've
experienced the body hurting on both sides same place/ same time
before...i see no redness nor any swelling. no position relieves the ache.
i take indomethicin sr every 12 hrs. and have been resorting to heat and
tylenol in addition with minimal relief...i feel like i'm waddling and it
has effected my sleep. i dread work the next two eves ( work 24 hrs. + per
week). usually my focused miseries fade after a while, like my right elbow
for a few weeks and now it's quiet again...balls of both feet and arches
ache too...anyone with similar sx? that's my sad tale today...i read all
posts daily but hang quiet...wish i could make the retreat ....does anyone
want to sit the 4 kids and two pets???....ha ha .....mo

Hi Amy,

I am so sorry to hear of your problems at this time. I am glad, however, that the doctors detected the problem and are going to do something about it. It sounds like it is time for you to back off the medication and see how your body can cope with the PA. My Dad used to say"Don't borrow trouble". We are all afraid of having another bad flare, but sometimes they don't come when we expect them. Sometimes they come when we are doing everything we can to avoid them. Whatever happens, you have lots of us who know how hard it is to deal with this disease who are ready to offer all the support that we can. I'll keep you close in my thoughts and prayers and hope that things will be better soon.

Allayne

Hi all --
Anyone who has visited the webpage recently knows that
it has not been updated in quite some time. I have
been very busy w/ my job, but now that the semester is
nearly over I'll be able to add some more recipes and
beef up the case histories section. Anyone who wants
me to feature their case history should let me know.
And I think we need pictures as well. What does
Michelle look like? I've known her all this time and
I have no idea what she looks like! PatB? The same
thing. And Gillian? Isn't everyone dying to see what
she looks like (if she is real -- I think she is the
figment of someone's imagination). Of course you all
know what I look like, and if you do not you can see a
picture of me in the Arthritis.about.com "Bios"
page:
http://arthritis.about.com/health/arthritis/library/blbio30.htm
So start sending me your pictures as attachments, and
if you don't have a scanner send me a photo, will
scan it and send it back to you -- write me for my
home address.
Robert
raharris@...

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Welcome do@... to the PA mailing list. We
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Hi Donna
YES that you for the information on the Love Bug Virus which has taken on a
few pseudonyms! Mom heard about Joke, but the others we did not hear.
However Mothers day here is PAST!
Yes it looks very hopeful that PEACE will come and personally I would like
to thank all the Presidents of America for getting peace on this Island. In
turn I have to THANK all my American Cousins, if you do not mind being
Cousins of mine, as after all over the years, you have VOTED these
Presidents IN!
I do NOT think the Irish and British Government would have got THIS far,
without the intervention of the American Senator Mitchell and I hope that
when the History books are written, they give him all the credit he truly
deserves.
Love and God Bless
Gillian

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If you have not checked the news lately - please, please do not open
any e-mails with the subject: ILOVEYOU It is a bad virus. It
will erase all of your JPG, JPEG, MP2, MP3 files and replace them
with copies of the virus. You will not get them back unles you have
a backup copy! My firm was infected this morning.

sorry everyone yesterday i wrote in about my pity party but some how the message
didnt go through.i sent it again, hopefully it worked.everyone is so kind, i
still got responses from people even when they didnt know what i had said.now
thats what i call support! thank you!
donna l.

Hi, everyone,
Please accept my thanks for all of the suggestions and comments in response to
my plea for advice about starting MTX therapy. After a lot of reading, more
reading, much thinking, and a discussion with my doctor (based on a fax'd list
of questions I sent him), I have decided to try it. He's going to start me on 1
mg Folic Acid daily, also.
May not actually begin treatment until next week (have too much going on this
weekend and business trip besides). I'll let you know how it goes.
Geri

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Hi Michelle,
I am in NB . I guess I would need to know the price you pay for the drugs. I
am on metho,gold,plaquenil,arthrotec,codeine contin,elavil,tylenol#3. i can
find the prices for these for you. I have all my pills and meds covered by
my drug plan so i pay nothing. Isubmit the reciept to the company then they
pay the drug store. thank God. i don't know how people with no coverage
affored their treatment.
Angela

Hi geri,
You have to look at any drug that is suggested to you and weigh the pros and
cons. i am 32 and have been on metho for almost 2 yrs. The leukemia you
mention is basically non existent at the doses we take for A. The leukemia
is most often later in patients who receive it as a high dose for chemo. I
say almost non existent cause I'm sure someone will say that they know
someone who got leukemia after taking low dose metho. Yes, it is possible,
but highly unlikely. it is not something I even think about and I am a
cancer ( oncology certified) nurse.
The other problem is liver. Yes, that does happen, BUT, you get your liver
enzyme blood work done monthly and they tell the docotr if there is any
problems with the liver. If the bloods are fine, then all is well. I also
take a bunch of other meds that can affect the liver and my bloods have
always been fine. Years ago they use to routinly do liver biopsies on
patients receiving metho, but they don't now. I would imagine that if your
bloods were abnormal they might suggest one to be done. What would hjappen
if there was a problem with your bloods is that they would stop the
medication.
You have to look at the quality of life that you want / I am 32 and I will
do whatever it takes to give me more " good " years with my husband and
family and hopefully get back to my nursing career.
If you have any more questions, please feel free to ask away.
Angela

Gillian,

Years ago, my father had a Knee replacement and they gave him a video of the surgery. That way you could get knocked out and still get to see the gore. I was never to impressed with his video, but he loved it. Yuck!

When I was 17, I was in a car accident and broke my femur. They had to put a 13 inch Pin, 3 screws, and a band in it to fix it. I had developed an embolism in brain and my lungs prior to surgery, because of the lung involvement, they gave me a spinal to deaden me from the waist down. When they were pounding the Pin down through my femur, they woke me up. I couldn't feel anything, but I still remember trying to talk to the doctors during the surgery. Now that was weird.

Take care, Becky

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I went to
Hi Louise,
I am wondering how long before you found the UVB helped. What I mean is
total elimination of the P. I had the PUVA about 3 yrs ago and it totally
took the areas away, but it took about 3 months of going for the treatment
every day, except weekends. I am back to all those areas, plus more. I would
like to try the lights again since I had such good results, but can't see
myself going every day for 3 months again. The last time I did it, I was
working at the hospital every day, so I just went down on my break for the
treatment. It was no inconvenience.
Thanks,
Angela

[Moderator's note: This message marks the return of
the "Welcome!" notes feature for new members that was
suspended while I was in the UK. Our apologies to
members 298-320-something who were not properly
welcomed! RAHarris]
Welcome mas@... to the PA mailing list. We
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Hi,
I had very bad toenails and thumbnails. The condition was mis diagnosed
as fungus, so naturally they didn't get better with spectrazole and/or
oxistat, but they cleared up pretty well when they were diagnosed as P
and treated with Dovonex. If fact, in another month, I hope to be able
to pick up small objects with thumb and finger, which is frustratingly
impossible with trashed thumbnails.
arjay

Hi Maria
So that is what it is? I have noticed that my toe nails are going deep
yellow and Mom dons the Crash Helmet when I try and cut them. Honest, my
nails are so THICK, I am considering using a chainsaw.
Maria, if you find any solution, please let me know!
Love and God Bless
Gillian

Hi All,
Thanks so much for your imput on shoes. You have been a great help. I
don't know if you realize it or not, but most of you who answered
told me this: Running shoes most of the time, and that Birkenstock
are your favorites...just thought you'd like to know.
My next question is this: Have any of you taken the PUVA treatments
and did not improve? My PS has been severe for a few years now and at
this writing it is getting worse. I have taken PUVA before (in fact
last year for one) with nothing happening. I stayed the same, still
red, still flakey, and still itchy!!! I try to get sun when I can
that seems to make my skin feel better, but in the last few years
haven't noticed much difference with that either. I keep going out to
get sun to turn around and come back in because Michigan hasn't
thawed out yet. Ha! We are getting sun, but it's still chilly. If any
of you have any suggestions about or thoughts about the PUVA let me
hear from you please.
Thanks
Donna

Hi Maggie
Well we just had a new baby, we I mean my Cousin. Like you I was panicking
over holding it, especially with this calcified shoulder. However I was able
to take said baby, one day old and hold it while sitting in the chair. In
fact once I got over the FEAR, 'I am not going to be able to do this,
because I will drop him', I was surprised at what I was able to do. The baby
went back to the Nursery in the hospital and the Nurse called me in to watch
her changing his nappy. I thought the Nurse was really rough with this new
born, he screamed the place down but the Nurse continued. After he went back
in his fish tank, the Nurse said, "I have real bad dreams since I have been
on this ward?" I said, "Really?" She then added, "Yes, every evening when I
depart after my shift is over, I expect to see all these children, now ten
years old, standing at the Hospital entrance waiting to kill me!"
Payback time no doubt?
Love and God Bless
Gillian

You state that you are postponing surgery on your knees because
of your young age. The latest research I have read no longer
recommends that. In fact, a recent article in the Arthritis
Foundation magazine Arthritis Today reports that people who wait
may actually have less desirable outcomes than people who get it
done when they need it. Additionally, I recently attended a
conference where the orthopedist pointed out that the "average 15
years" is based on older knee replacements with older adhesives.
There is reason to believe that the newer materials and adhesives
will last much longer. Nowadays, doctors can often repair
replacement joints without new replacements if they do get worn.
My mother in law is just a bit older than you are. She has put off
surgery for several years because she feared having it done twice.
She is finally going in this summer for surgery. I look back at the
time she has been in great pain, the time she has missed fully
enjoying her grandchildren, the way she has had to modify her
activities. I wish she had done surgery sooner. We only have
today and tomorrow is not promised to us. I think that for you, and
others of us that contemplate surgery, medications, etc. we can
only make our best choices by questioning our current quality of
life and then trying to guess what lies ahead. These are difficult
decisions indeed. Good luck with your decisions...find out all you
can. LaRita
Thought from LaRita
"The most exciting phrase to hear in science, the one that heralds new
discoveries, is not 'Eureka!' (I found it!) but 'That's funny ...'"
-- Isaac Asimov

I would like to unsubscribe to your newsletter. Thank you.

I would like to unsubscribe to ur newsletter.
Sincerly,
Joanna miller
To unsubscribe to go www.onelist.com and sign in. Then you can unsubscribe from
this list at your "my groups".

Hi Marie
With or without the skin off the fresh milk, I still refused to eat bread.
Odd though because it seems I am allergic to white bread, according to the
last allergist I saw. Yes my Brother endured 'Bilious Attacks' until Nana
sorted him out. She boiled the fresh un-pasteurised cows milk, until it
separated, whereupon you get a 'green whey'. She poured it off and insisted
he DRANK it. Well it CURED him, I can testify to that! Yes I have fond
memories of my childhood, especially here in Kerry. Back then they had NO
mains water, so if you wanted a glass of water you had to go to the Well!
One day I was playing with Spot the dog in the marsh and he got all dirty,
so I located a really clean large puddle and gave him a wash! See ever kind
to small creatures and hygienic as well! Nana stormed into the kitchen and
wanted to know WHO had dirtied the Well? Not me, I had not been near the
Well. I was a good girl had spent the afternoon washing Spot in that big
clean puddle beyond the gate! Nana was NOT happy. Seems this really large
clean puddle was a SPRING, where they could draw water from, instead of
walking two miles to the Public Well! So guess where I spent the rest of my
HOLIDAY, yep drawing water from the Public Well, with my Cousins.
Love and God Bless
Gillian

Hello Rivki and all who pinch themselves,
First of all you have to find out if the injection has
to be given deep intramuscular or subcutaneous.
Normally this kind of drugs are given i.m.
In this case the best way indeed is to "pinch the
thigh" so you can get into the muscle but I think it
would be much easier if your husband (or partner or
mother or whatever), would learn to give an i.m.
injection. It is very easy and I taught my pupils to
use an orange (the skin of the orange is like the
human skin), to learn how to give an injection.
Once you don't have to do it yourself, it can be given
in the upper R. or L quadrant of the buttock and after
a good rub you would have no pain.
In case they refuse (for being sissy) to learn this,
you take revenge by putting too much salt in the
potatoes, have a headache at bedtime or any other way
you know.
Greetings.
Margaretha.
register as a user that way you can come right in on
Monday nights. Hope to see you there
<hr
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Address: http://www.protocare.com/trials/Volunteer/VolContainer.html
This is another site from the one sent in earlier. it has a few
locations that might work for someone. Only USA locations given. Sorry

Hi Kirsten
When I first landed here, people were very wary of my noticeable lesions. It
was so bad that I thought about buying a bell, tying it around my neck and
shouting, "Leper!" When the arthritis erupted, well now I was a Leper with
no legs! Anyway, I felt I had to make some form of logical response up, just
in case people started to ask me what my problem was. PA has little
publicity and even if you told the truth, chances are they would refuse to
hear it. So the nearest I came up with, "I have rising damp trapped by
falling condensation!", whereupon Mom would add, "She is ILL!" I love Irish
Logic!
Love and God Bless
Gillian

Hi Jayne
I really think it depends on what he is looking for? MRI show the body in
'sliced' form, or so I understand. You can then see inside objects, like
bones, muscles, tendons, brains, hearts and so on. X-rays show the exterior
and subtle things like alignment. I am not sure what I would prefer,
probably the x-ray as I would not be able to put all the MRI slices together
in my brain and see if the structure to your body is straight. As you know I
have Scolosis, side ways curvature to my lower spine. I doubt this would
have shown on a MRI, buy it did on the x-ray.
Love and God Bless
Gillian

Hi Kirsten
The answer to your question, I do not know! I have met a few people with
just psoriasis and a few people with PA! From talking to them, it seems that
we are all really different, which probably explains the lack of any real
investigation into this condition. Personally my Psoriasis settled in
certain areas, ankles, knees, chest, elbows, hands and ears. I did see a
Dermatologist who examined my lesions and then said, "Due to their
positions, I cannot help you!" Even when my arthritis flared, my psoriasis
remained the EXACT same! It does not 'itch' it causes me no distress, it is
now part of me. Should it completely clear, well my reaction would be to run
to my GP in panic! Other PA people that I have met, have this flare in the
psoriasis, then the arthritis steps in. The medical people seem to think
that if they clear the psoriasis the arthritis will go into remission. I
guess that is why they prescribe MTX, clear the P and the PA will also
vanish.
Since I have been on the EPO the arthritis has not caused me any real
problems, it is just their. The psoriasis is clearing, but slowly. I have
none on my ankles, knees, chest anymore and this year the lesions on my
elbows and hands are reducing in size. Mom thinks it is now all heading
towards my head, where it will eventually escape! I must stop her from
watching the X-Files!
Love and God Bless
Gillian

Hi all....It's been a year since my last mri/bone scan. Now my RD has
ordered an xray of the SI joint.
Isn't that going backwards? I thought xrays were useless and didn't
show much? Just curious.

Hi all,
I haven't had PA long, so I have a question. When someone is coming out of
a flare, does the P go away?
Thanks,
Kirsten

I have iced down my toes before but never wrapped them. I've put my
whole foot in a five gallon bucket of ice water to get the swelling
down enough to put on my steel-toed boots in order to go to work. Yow!
I have splinted a finger to keep it from curling inward. Gentle
pressure to stretch it out and then binding it in a spint so it won't
curl. Reminds me of "mom" saying, "if you make a face it will freeze
that way". I prefer forcing it out. If it has to end up curled then
maybe a tennis ball to give a natural curl? Grasp and wrap?
I prefer heat but ice does a better job. Maybe because cold reduces
and the vessels can circulate better?
Pat B

Hi Founder and Moderators.
ONCE upon a time, I received notification of New members, think we were up
to 298 while Robert was away. Now I do not get that notification, so have we
changed the system? How many PAers are there now?
Love and God Bless
Gillian

Now that my colonoscopy is "behind" me I can start taking the
Hi,
I am wondering about your colonoscopy. Were you put to sleep to have it
done? I need to have one done, but haven';t because I WILL not do it if I'm
not asleep, so am afraid to ask for one.I am a nurse and have seen these
done on patients that were awake and I will not do that. How bad was it?
Angela

Hi Carol B
I am on Voltaren-XR 100mg twice a day. I have just had my dose
increased to this level. It is helping some to have the dosage
increased. I am also on 2 500mg Azulfidine 3 times a day, Folic
acid, and synthroid. I clatter when I walk! Right now my mouth is
really sore, but the pain is less than it was last week. My eyes are
extreemly dry. Last night I went to my monthly bunko game and could
hardly drive home. My eyes were so dry that I felt like my contacts
were stuck to my eyelids. I finally made it home and vowed not to
drive at night again until this is cleared up. I hope the Voltaren
helps you. I am on so much that I don't know what is causing the
side-effects. I suspect it is the Azulfidine.
Good luck,
Allayne

HI LYNN,

I ALSO HAD PROBLEMS WITH MY EYES,THE INSIDES FELT LIKE I COULD TAKE A SOS PAD AND SCRUB IT (BUT I DIDNT), WHEN I WOULD FLARE UP I WOULD HAVE FLARE UPS IN MY EYES AND ALSO MY MOUTH WOULD LOOK LIKE I SUCKED ON A TAIL PIPE. MY EYES WOULD SWELL SO BAD THAT WHEN I WOULD GO ON PREDS. TO GET THE SWELLING DOWN MY SKIN WOULD PEEL AROUND MY EYES, THEY GAVE ME EYE DROPS AND SAUVES FOR THEM BUT IVE BEEN ON METH, INJECTIONS SINCE OCT. AND I HAVE NOT HAD FLARE UPS IN MY EYES SO FAR,(BUT MY HANDS STILL DO ).FOR YEARS THAT HAS BEEN HAPPENING TO ME AND I WOULD GO TO EYE DOCS, THINKING I MUST HAVE AN INFECTION, BUT NEVER DID. I EVEN PUT MILK IN A GLASS AND HELD IT UP TO MY EYES AND IT WOULD SOOTH THEM FOR A LITTLE WHILE, I KNOW IT SOUNDS GROSS BUT I TRYED EVERYTHING AND ANYTHING.MY EYES ARE BLUE AND WHEN I FLARED UP THEY WERE SO RED THAT MY EYES LOOKED GREEN IT WAS SCARY LOOKING. SO WHAT YOUR GOING THROUGH IS NORMAL IN MY EYES.

I DONT KNOW HOW LONG YOU HAVE BEEN TAKING METH, BUT IF YOUR EYES GET WORST THEY CAN INCREASE YOUR DOSAGE.

GOOD LUCK WITH YOUR EYES LYNN.

DONNA

Hi Gillian
you mentioned in your post

i had a trigger point injection in my left shoulder and it has been completely free of pain since approximately 3 weeks after the procedure. i stay away form any cotrosteriods, but this was only lidocaine, so i let the rheumy stick it to me and with GREAT results.

what injection are you waiting for? is there something else wonderful out there?

curious in california
love to all
barb

oh another thing g... aren't you in ireland? if you are... my fiance are attending a wedding in july in county cork. do you know anything about this area? we would love to travel about ireland a bit. any suggestions would be lovely. you can e me directly or just brag about ireland to everyone.

thanks in advance
barb

Hi Gillian
Thanks for the response.. I think I was a little too excited and started off
fast. I guess I did the 20 minutes cause I felt fins doing it. Today is
Friday, 4 days later, and this is the first day I have woken with very
little pain in my knees. So, yes, I did overdo it. I am so anxious to lose
the weight and when I set my mind to something I go all out. I think your
suggestion of 5 minutes and slowly increasing sounds like a good idea. I am
going to restart on Monday. i have to go to a 2 day first aid course
tomorrow and SUnday and don't want to be in pain, so I won't do any
exercises today
Thanks
Angela

Hi All
Now if you do not hear from me over the next few days, do not panic. I shall
be flat on my back IN bed, ALONE!
My Cousin played a 'practical joke' on us this morning, rang the door bell
at 9am, while delivering a bag of Coal next door! Anyway, half asleep I
alighted from the bed, arrived at the door, opened it and found ZERO! I then
checked to make sure I was wearing my PJs! I must try and correct my
priorities, check PJs before opening the front door! [I will PRINT a notice
saying that and pin it to the door!] Mom fell out of her bed, rushed to the
front bedroom and peered, as they do at that age! Obviously she realised
what was going on, so went straight back to bed. I closed the front door,
just as Hermes alighted from her dream, 'better late than never I suppose'
and we passed in the hall. I then flung my body back into bed, where it was
joined by 30 kilo's of Labrador!
Take two on the start of today, occurred at Noon.
I struggled to get upright and noticed a severe pain in my lower back! I
assume however I alighted earlier, I must have damaged something? However I
was determined to walk Hermes to the Park, which we made, but NOW???
Well my electric blanket is ON, I am about to digest two pain killers and
hit the sack. As to if I will be vertical tomorrow, keep your fingers, legs,
toes and eyes crossed!
Love and God Bless
Gillian

Dear Lee Ann,
I recognized your symptoms very well.
More than fifteen years ago I started getting bouts of
taquicardia; sometimes my heart would skip a few beats
and start again rapidly. When I would be sitting on a
chair it felt as if my heart was coming out through my
back. Then a queezy, empty feeling just under my
breastbone and dizzyness. It was really scary.
All this happened before I had P or PA and also before
I became perimenopausical.
The odd thing is that I could (and still can) feel an
attack coming a minute before.
When I went to the cardiologist and I was taped to his
machine I told him that and, of course, he laughed.
I was "lucky" that I just had one of my frequent "tick-
tack" days and I asked him to just wait a while or
switch the thing off untill I told him: "NOW!"
He humoured me and to his astonishment I produced two
beuatiful specimens on his paper strip within twenty
minutes. He asked if I had studied yoga.
As far as I know it has nothing to do with panic
situations (when you get a sudden fright your heart
beats differently, don't you think?) but if you don't
know what is going on you might get panicky.
Anyway, to make a long story short, he told me that I
had arythmia cardiaca (spelling?) of unknown origin
but there was nothing wrong with my heart so not to
worry. But, if it did worry me he would prescribe
me "Sumial" (propranolol, a Betha-blocker).
I took this for a few days and it worked immediately
but the problem was that I felt "sad", the only word I
can find to describe my feeling. Of course I thought
this was nonsense, phoned him nevertheless and he said
that this indeed could be an effect of the Betha-
blocker.
I stopped the medicine and had after that far
fewer "t.t.'s".
Anecdotical; when I started the change of life
a "t.t." heralded a "hot flush".
I think that our body works as a "whole" and every
little thing interacts with every other little thing
but I have found no connection between PA and
our "tick-tack" trouble.
By the way, my mother has had the same symptoms for
donkey years. She is now 84 and has many things wrong
with her health but her heart is o.k.!
Since I stopped thinking about my "t.t.'s" I have
gotten them less and less. Also I think that we tend a
little bit to relate every new body-problem with PA
and we should not do that. We have enough on our plate
as it is.
Thank you for telling me about those wonderful people
who take care of so many children.
Greetings.
Margaretha.
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Hi Tami,

I am from New Port Richey, FL. (Pasco Co.) Where are you from? Also, I remember reading in the archives (I think) about a PA specialist connected with the University of South Florida. Does anyone know his name? Thanks.

Take care, Kelly

I'm another person that goes to the University of South Florida clinic, but I
see Dr. Kanik instead of Dr. Vasey. I've been seeing him for a year now and I
think he is fantastic. I could barely function when I first went and while I am
still on disability, I am much better than I was.
Zinger, you mention that you go to a heated pool--can you tell me where you are
doing this? I live in Tampa so I hope you aren't doing this in St. Pete, I
would like to avoid the drive if possible....I have been looking for a pool all
over and I even called the Arthritis Foundation but they aren't having any
classes right now so I have nowhere to do this. My rheumy told me he thinks the
pool is the only physical activity I can handle right now so I am eager to try
it.
Thanks for any info--
Kim
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Hi all,
I wanted to thank everyone that sent me good wishes and advice
when I made the decision to withdraw from school this semester.
It is still a hard thing for me but it is the right thing for now.
The RD has increased my MTX to 20 mg sub cutaneous now and
has me on 30 mg of prednisone. This is the dosage that I have
been on now for 3 weeks or so. This week I am having trouble with
mouth sores a little...and a very metallic taste in the back of my
throat. Has anyone else experienced the metallic taste? The RD
is going to switch me to folinate this week from the folic acid. He
says that will take care of the mouth sores. He is also planning to
start reducing the prednisone. I can't tell that it has really helped
much.
Also, I would appreciate being kept in your thoughts this week. On
Thursday I am scheduled to have lithotrpsy to break up a kidney
stone. It sure seems like everything is trying to hit home at one
time...LOL.
Thanks again,
Charise

Hi Karen
handicapped stickers?"
Taken back, she replied----I have M.S. The man
replied---"You look pretty good to me to have that
disease...people like you abuse the handicap parking<
My Mom has a 'saying' which I think relates to this situation, 'Tis not that
they are Ignorant, tis just that they know nothing'. Yesterday I went food
shopping with Mom. We got to the Check Out, where I did the packing and Mom
PAID the bill. The girl who we meet on a regular basis said, "I notice you
Mom always pays?" Mom butted in with, "Yes she gets away with the packing,
while I always pay!" The Check Out girl then said, "So your Mom retired and
you followed her back, now she gets all the bills!" While this annoyed me, I
just decided to let it wash over my head. I know their will come a time in
the future when I will probably have another flare. Then I will be doing the
paying, the easy bit, while Mom struggles with the packing, the hard graft.
On that day I reckon this check out girl is really going to have her eyes
opened! Until then I will allow her to quote, "Put her foot in her Mouth!"
Love and God Bless
Gillian

Just a brief message to let you know that we aren't
alone in the disability department...here's a fine
story..
A friend of mine who is about 44 years old is
suffering from Multiple Sclerosis...
She went to the grocery store and the rain was coming
down...she pulled into the handicapped spot, put her
blue spots up and got out her cane....she wasn't but
two feet from the car when an elderly man came at her
screaming " what's wrong with you?" "Why do you have
handicapped stickers?"
Taken back, she replied----I have M.S. The man
replied---"You look pretty good to me to have that
disease...people like you abuse the handicap parking..
She preceded to walk away, but was very upset...now i
can tell you that she teaches at my school and has a
very difficult time getting around visibly...everyday,
she offers "me" encouragement....and she can barely
get up the steps....
the man continued to follow her through the grocery
store, and make comments to her...he started to tell
other shoppers, that she was a phony...etc....
needless to say, she was devastated...She said to
me---
it's bad enough that i have a disease which alters my
life....why do people have to make me feel worse? she
said "I wish I didn't have to use the handicap
parking...
All I could do, was give her a hug...
People really don't understand----do they?
What a Shame!!
Karen

Hi Allayne
Well here legally you cannot claim unemployment assistance unless you are
fit for work! Here we live in a 'right or wrong' situation, you are either
able or disable. As you know with PA we have flares and remissions, a kinda
grey area. Try and explain this to the authorities, "Well when I am bad I am
disabled, but when I am good I can work!" Then asked them to look up the
Authoritative manual and figure out which Pension you are allowed to be on?
I love red tape!
Although I was ON disability, I refused to have to explain my life to date,
every week! They even asked me "How MUCH did your late Father leave you?" I
replied, "Well he left me very fond memories, much love and my Mom, put a
PRICE on that if you can!" When I went back to the unemployed people, they
asked no questions and were happy to see me! The fact that they even rushed
out to assist me to a private office and had to find a chair for me to sit
on, caused them no legal problems whatsoever!
Yes I miss the challenges of employment and wish I could go back to work.
However PA is I suppose a bigger challenge. The largest amount of cash I
have even written off as an accountant was £927,456.76p, I can remember it
because it was a BIG event in my career. Wipe almost one million off at the
touch of a button, thats POWER for you. At that time I thought that I had
hit the ultimate highlight of my career, until I succumbed to PA. Now every
single day I seem to have to write off a large amount, but you cannot put
and cash value on it!
Love and God Bless
Gillian

Hello all,
I never thought about it but now that Gillian and
Helen mention it, the chairs on which we sit can help
(or hinder) a lot. I cann't say that my back is giving
me much trouble (only on getting up in the morning or
after making beds) but I have noticed that straight
chairs are better for us.
I have a diningroom chair in front of my p.c. and the
typist chair I use to roll around the kitchen when my
feet are bad.
I seldom sit on the settee or a "comfortable" chair
but do all my things on the diningroom or kitchentable
on a hard chair with a cushion. When I go visiting it
is always: "No, a Victorian chair for Margaretha!."
Also I think it is very important to take care of our
posture, if this is the right English word. I mean the
way we hold our body or walk. Years ago my brother
said I walked like John Wayne (he still calls me that)
and he was right; because of the discomfort in several
parts of my anatomy I "waddled", like Donald Duck.
Now I always try to walk with my legs together (like
those models with their tummies pushed out) and keep
my spine straight.
Sitting for a while on the settee gives me pain in the
ribs (I thought that was some imagination of mine but
have learned that this has also to do with the PA).
I even once bought (a very expensive) rocking chair
(like Kennedy) but I kept falling out of it!. It now
stands in my husbands room and the cats love it.
Thanks to the persons who mentioned this subject.
Greetings.
Margaretha.
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I don't know if we can go on unemployment here if we can't work
because of health problems. I'll have to look into it. It is a
shame that we are forced to hire a lawyer to prove that we are sick.
I would love to be able to work 8 hrs again. I miss the challenges
of my job. Now the challenges are all physical.
I would like to invite any PA sufferers in MS to send me a message.
I think it would help if we could try to meet and discuss common
problems and interests.

Hi Michelle! I will be praying for you today that all goes well with the
appointment. Take care God Bless Love, Wendy

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Ron,
The sun provides vitamin D and the light helps clears up the
psoriasis. What I was told is you either opt for au natural or you
use the medications. The reason for either/or is that the medications increase
the
risk of sun burn by about 30%(?). The PUVA light treatments expose
the skin to whatever is in the light exposure that works towards
clearing the psoriasis.
Not being near light treatments facilities and having little
psoriasis I get small exposures to sunlight frequently during the
day. At work I take off my hardhat while walking up and down the hill
between the office and the laboratory. During the weekend when I can
work in the yard, artyhritis permitting I work for short segments of
time and rest in between. I do use a straw hat off and on to expose
the scalp psoriasis to the sun.
Pat B

Hi all,

I need a question answered. I may be going to Peurto Rico. I have heard that it is prohibited to take narcotics. I am on prescription codeine contin and tylenol#3, both narcotics. Does anyone know if I can go and take these in their bottles? I can't imagine that I can't. If I have a docotr's letter saying that I need them? Anyone travelled and taken narcotics with them? I hate to think that I won't be able to go because of this little irritation, yet couldn't be without them at this point.

Angela

Angela,
There shouldn't be a problem with taking your pain meds to Puerto Rico
as US drug laws apply there. DEFINATELY leave the meds in their pharmacy
containers which have YOUR NAME on them and I would bring the note from
your doctor, just in case. I don't think this applies when you go out of
US juristictions. If your still unsure, call the Federal Government
(FDA? Dept. of Interior?), the numbers are in the blue pages of your
phone book. The sun should help the P but remember to use your
sunscreen, the incidence of Melanoma keeps rising.
Barry

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Yes, you are quite right. I am always willing to
answer questions they ask in these censusses (censi??
censae???) but I don't do them anymore. They should
have an option like "yes, but.." or "no, but...".
Greetings.
Margaretha.
medications that enable you to do those things? Then
how do you answer. There is only, yes, and no. No
exceptions.
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I all,

Haven't written here for awhile, but have no fear, I am still reading. I got my cane last week and am still struggling with using it. At home is no problem, but I feel a bit self-conscious out and about ( after all, I'm only 32!). I worry about how I will explain to people who are use to seeing me why I am using one now. Especially the doctors.

I go for my referral to another rheumatologist today. My doctor wanted me to see him to see if he has any further suggestions as she doesn't know what to do with me next. I am worried about what he may ask me. I hope he has read my chart ( I doubt he has!) since I don't think I can go through the entire history. I am going to ask him about increasing the prednisone, even though I don't want to take any more, but it doesn't seem to be enough. I still have alot of pain in the morning. Today is awful.. can hardly move and even muscles and joints that have never bothered me are hurting. I had cut my codeine contin down to 2 150 mg tabs from 3. I have already taken 2 tylenol #3 this AM.

The P is getting much worse and the spots I have are getting bigger. This is very frustrating. Just when I thought things were starting to get a bit better! I guess my body is bringing me back to reality!

To all the new memebers: There have been so many of you. I hope you feel well soon and come here for support. The ASMP is the best. I encourage you all to attend it.

Angela

I asked this a long time ago...now I am curious with our new
members...do any of you suffer from thigh pain. I have pa of the
spine..and when my back is flaring...which lately has been often my
thighs often kill me at night when trying to sleep..Just curious
Jayne

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To all,
About the usefulness of X-Rays; the last time I went
they also did a "Resonancia Magnetica" test, literally
translated magnetic resonance. I got the thumbs up
sign so I am (still) ok bonewise.
If I'm allowed a small OT I would like to share the
following with you.
For several weeks I have not been able to clean the
shutters of the French windows because some little
green grubs had decided to make a "nest" in several
places and spin themselves into little cocoons.
To-day is their birthday and I have "lost" nearly the
whole afternoon watching them really struggling out,
resting a while, looking like green leaves, pumping
themselves up and finally off they go, my beautiful
butterflies; "cabbage-whites" as they are called in
Holland.
It surely beats an afternoon in front of the telly!
Greetings.
Margaretha.
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hi becky , this is mo. i looked up vioxx on line and indeed it does say to
notify your physician if you experince unusual swelling. i think it would
be the prudent thing to follow up on this promptly. your doctor must have
turned his/her patient files over to another doctor. if it was a group
practice you could just call and explain. i don't wish to be an alarmist
but it's good to play it safe. we are all so different in what meds our
body does/ doesn't tolerate...best of luck, mo

I have been on sulphasalazine for almost a year. In the summer, the pain
got much worse and I was prescribed 1600mg slow-release Ibuprofen daily.
This has been a life-saver and made me almost feel normal again on some
days. But my thought is this - how do I know what the pain is like
underneath the NSAID? I suspect it it's not got better, but how would I
know? Or maybe the PA is getting worse? How do I tell?
When I was first on the sulphasalazine, I was having blood tests and seeing
the Rheumy every six weeks or so, but in October, when I was starting to
feel more normal, the consultant told me there was no need to go back unless
things got worse. So I've not had any blood tests since. But it's been
niggling away at me ever since - I keep thinking that surely they still need
to check me occasionally, but then I think that the doctor wouldn't keep
prescribing them unless they were happy that I didn't need checking out.
Then someone mentioned on the list that for all DMARDs you need regular
blood tests, even every couple of weeks, and I started doubting again. Any
thoughts?

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Welcome mcgee@... to the PA mailing list.
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http://www.wpunj.edu/pa/
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Michelle, List founder and moderator
Robert, Webmaster and moderator
PatB and Patty, Moderators

Welcome nurskory@... to the PA mailing list.
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Michelle, List founder and moderator
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PatB and Patty, Moderators

Hello Kristin,
Untill now not any doctor has been able to explain to
me how or if they can tell that somebody with PA is
going to have joint/bone damage or not. The risks for
RA patients are much greater.
I have had three bad flares over the last ten years
and have always refused drugs, except for the odd
aspirin when the pain was bad and I had to do some
work that could not be put off.
Because some of my lab.tests were not very healthy (to
put it mildly) I regularly had check ups and sometimes
they X-Rayed my bones and until now they are fine.
Thanks to the fact that I changed my diet and way of
life (but that's another chapter) my general health
has improved very much and my PA some. But it is slow
going.
Apart from the aforementioned flares I keep the P
under control with Dovonex (when I see a spot coming I
rub some on it one or two times and it goes) and the
pains (sometimes bad, other times very little) I have
learned to live with.
This is just my experience but I would like to give
you one piece of advice; take care of your feet, wear
good footwear and do exercises for your feet and
calves to prevent plantar fascitis, which is no fun to
have!
Greetings.
Margaretha.
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Welcome mbgreen@... to the PA mailing list.
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Welcome
Michelle, List founder and moderator
Robert, Webmaster and moderator
PatB and Patty, Moderators

Welcome ecogeste.intl@... to the PA mailing
list. We are a group of over 290 PA'ers from all over
the world who share our experiences by e-mail almost
daily.
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our past discussions, and to send us an e mail
introducing yourself to:
PsoriaticArthritis@onelist.com.
See our new webpage at: http://www.wpunj.edu/pa/
Welcome
Michelle, List founder and moderator
Robert, Webmaster and moderator
PatB and Patty, Moderators

Welcome bfmartin@... to the PA mailing
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the world who share our experiences by e-mail almost
daily.
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Michelle, List founder and moderator
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PatB and Patty, Moderators

Welcome coronabarbara@... to the PA mailing list.
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Michelle, List founder and moderator
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PatB and Patty, Moderators

Hello Janet,
No, you did not misunderstand what I wrote; you
misunderstood what I meant.
The "socially retarded" simply means that the society
here offers few opportunities for a woman (married or
not) to work outside the home.
I myself have been "a kept woman", and please don't
get upset about THIS expression, since I live here,
for the simple reason that there was no job available.
Did you really think that one would think less of a
woman because she prefers (or has to be) a homemaker
because she does not bring money in the kitty? That
would be daft! Has anybody ever calculated the
economic value of the multi-jobs of a housewife?
I hope you also gathered from my message that I was
breaking a lance for the women who stay home "in the
old fashioned way" to take care of the children.
It was not nice of you to find malice in something
where none was intended.
Lastly, I would like to mention that English is only
my third language so maybe I don't explain myself
always too well but we, foreigners, also like to form
part of an English speaking group, risking being
misunderstood sometimes.
I wish you well and a pleasant stay in Ireland.
Greetings.
Margaretha.
"Of course in many ways people here are socially
retarded, meaning that many women depend on the income
of the husband."
husband for financial support, and that most certainly
does not mean that I am socially retarded! My husband
was highly supportive of my stopping full-time work
when my arthritis became too much for me. He was once
again just as supportive when I had to stop working
part-time for the same reason. My husband recognizes
that I contribute so much more to our marriage than a
about a situation in which a woman chooses (or has no
choice!) to be a homemaker and a mother. It is
comments such as this one which only breeds the
negativity that already sits w