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hi all,
i was wondering what vitamins you all take for PA. i haven't been
taking any and realized i ought to start ...
... i eagerly await your responses :)
-michele
[Moderator's Note: Good timing! I just posted a message on this. Basically, beef
up on all your vitamins! I personally think PAers don't absorb their vitamins
fully, so get plenty. Get plenty of Omega-3s through flax seed and fish to help
reduce inflammation. Eat plenty of fruits and vegetables and whole grains for
food vitamins. Take vitamin supplements as well. -Meghan]

While replenishing my weekly pill dispensers this evening, it
occurred to me that over the years I seem to have developed a talent
for being able to dump a specified number of pills out of a pill
bottle with pretty good accuracy.
Let me explain. I have three weekly pill dispensers. They're the kind
with the seven compartments - one for each day of the week. I think
they're very handy because I know if I've already taken my dosage for
the day, or if I've missed a dose, and I don't have to open up a
whole bottle of pills to take my medication.
Also, some years ago I asked a pharmacist for one of their pill trays
(ie; the ones they use to dispense pills from large wholesale size
bottles into individual bottles for someone getting a prescription
filled). They're very handy because you can dump out a large quantity
of pills, take out however many you need from the pile, and then use
the "spout" on the corner of the tray to dump the remainder of the
pills back into their original container. The pharmacist was happy to
give me one "gratis" because they get them free from the
pharmaceutical companies.
One of my weekend rituals is to get out all my prescription
medications, vitamins, etc., and fill my pill dispensers for the
coming week. I have three dispensers: one for the mornings, one for
the evenings, and one for things that need to be taken on an empty
stomach (usually right after I get home from work). I used to just
dump out a large quantity of pills onto the pill tray, pick out as
many as I need to fill my dispensers, and dump the rest back into the
bottle. Over the years however, I've unconsciously gotten to the
point that I can shake a pill bottle and dump out just about the
right quantity of pills to fill my dispensers. The number of pills
needed varies, because sometimes I take more than one of them at a
time (Sulfasalazine for example), and sometimes I forget to take one
or more doses so I need less than seven pills. The number of pills
needed can therefore vary anywhere from 1 to two or three dozen.
Anyhow, it occurred to me that I'm probably not the only one to
practice this weekly ritual and that perhaps we could all get
together and have "pill dispensing" contests to see who can get
closest to dumping a prescribed number of pills from pill bottles
onto a tray! The contestants could be armed with full pill bottles, a
judge could spin a wheel (like the wheel on the TV show "Wheel of
Fortune" for example) to determine the number of pills to be
dispensed, and then fire a starters-pistol to start the dispensing.
Each round should be limited to three or four seconds to discourage
laggards from dumping too slowly and to increase the pace of the
contest. There could even be different contest categories for round
pills, oval shaped pills, capsules, caplets, gel caps, and the
cylindrical ones with rounded ends, etc.
We could start off with local contests, and have elimination events
that work up to the national level, which would of course be
broadcast live on all the major national TV networks - ABC, NBC, CBS,
etc. Who knows, as the "baby boom" generation ages sufficiently,
maybe it could even become an Olympic Sport someday. Imagine winning
an Olympic Gold Medal for "Pill Counting"! We might even have
intermural contests with the "Bean Counters" of the world!
Then again, maybe not...
-- Ron ;-)

... the Quick Pick ad is driving me crazy.... I can't even get it to
stop blinking long enough to concentrate on the message posted next
to it... any suggestions as to how to stop the blinking? I used to
hit one of the upper left keys, but even that is not working. I have
cut out a piece of thin cardboard to flap it down over the adds, but
I have to keep putting it up and flapping it down. The adds are
fine, but the blinking is soooooo irritating... and for 'breaking and
entering' tips... strange. Well, let's see... being an Occupational
Therapist and having PA... I suppose it could be a useful piece of
adaptive equipment for a 'disabled, arthritic burgler'... :o)
See, I still have a sense of humor.
Lisa #2

I have now been using my electrical driven adjustable bed for six weeks and my
immediate comment is : why didn't I purchase one years ago. I have found two
settings: one for sleeping at night which sees me sleep through most of the
night and without most of those early morning kinks, and the other is for
daytime rest with the head raised right up enabling me to read. The inbuilt
massager is a touch of luxury ! It was not cheap to purchase, but what price do
we put on anything which helps us to cope.
Regards, Gordon

i so much enjoyed chatting with all of you. i just wanted to thank
you all for being there and look forward to another chat soon,,,tk

i may be confused, my husband says i am frequently!?
but, if the chat is at 8 pm central, how can it be
at 8pm eastern. we are 3 hours ahead now that
the time changed. or i am i looking at the wrong time
for ohio. i can never keep it straight!
thanks
susan in ohio
[Moderator's Note: 8pm Central = 9 pm Eastern = 6pm Pacific = 7pm Mountain. It
looks like Ohio is in the Easten Time Zone (EST = Easter Standard Time).
-Meghan]

Nancy P,
I know my hair has become brittle. I have used MTX
for the last 3 years. Plenty of white and gray mixed
in. I finally cut my hair to about 3/4 of an inch.
Very low maintenance and I love it.
Remember I belong to the great fraternity of males.
We operate on a few rules.
1. Never ask for directions, eventually you will find
where you are going or the wife will fall asleep and
then you can ask in her name.
2. "I don't know" Those words are never spoken.
What we don't know we speak BS about the subject. That
is how I received my first degree in college. A BS in
Business Administration. My second degree was called
a MS, which stood for More Sh*T. My last degree was a
Ph.D. It stands for Piled Higher and Deeper.
Seriously, I do not mind using a handicap sticker on
a bad day. I do have trouble using a scooter. My
wife has one and loves it. She is 49 and I am 45. My
ego really gets in the way of using the scooter. One
more male fault.
=====
In Peace,
Daniel P. Lake Ph.D.

after being on lamisil for three months and both my docs thinking it
was fungal, i think it is p thet hurt have a hump in the middle
length wise and are thick. what is the treatment for this,or is there
one. my meds have cleared my skin but my toes have flaired. i better
find a mate before i am all crusty and crooked! whishing you all
well..kyle

Does anyone know where I can get a cheap copy of this video and if it
works or not? I have very limited funds right now but from what I
have read about it, it sounds like something worthwhile. Every store
in town is out of it and it is too expensive online (with s/h etc)
and most places even there are out of stock. If anyone has a copy
that they no longer want I would greatly appreciate it. Thanks for
reading.
Hugs,
Ali

I've checked with the head of Epidemiology in the hospital where I
work and false positives are not common in TB results, you need to be
very careful in doubting this diagnosis... the right things are what
you are doing... getting a chest X-ray and taking INH before starting
any immunosuppressive therapies.
I'm usually the first to scream second opinion, but I work in
Infectious Disease as a Counselor and TB is nothing to play around
with. Properly treated, you'll be fine, please be careful!
Oh yea, please be sure and tell someone you've had a positive test
result before they place another test if you chose that route -
reactions tend to get bigger each time and you could get into trouble
that way too. Please be safe!

Thanks to all for your words of friendship and the realization that PA knows
no geographical boundaries. I guess I should remember the paragraph about the
PA support group which I wrote in my own magazine article. In it I included
phrases such as: "support each other even though we may be continents apart" ,
"it is wonderful to not feel alone with this disease", and "to have friends who
understand".
Let us consider this subject to be now closed and go forward in friendship.
Regards, Gordon

I was wondering if anyone is having any issues with weight loss while
being on Enbrel?
I started Enbrel in May of 2001 and since then I've lost almost 20
pounds. Not that I'm complaining...lol. I'm not dieting, but my
food cravings have changed. I want salads a lot and the mere smell
of meat cooking makes me nauseous. I also have periodic bouts with
nausea..usually the day after my shot. It's nothing that I can't
handle though. I told my doctor about the nausea and he didn't seem
concerned. He's been questioning me about the weight loss and as far
as we can come up with it's the combo of the lack of appitite, the
fact that I'm no longer on azulfidine requiring me to eat 3 meals a
day, and the times I find myself puking my guts up.
I'd love to know if other people are having the same issue...
Thanks!!
Laura

"I will need a new supply before I leave but I don't want to order it
and have to travel for three or four days in a car with a three month
supply of Enbre that I am trying to keep at a constant temperature."
Merck Medco is really good about you calling with a problem. May I
suggest you call them and tell them you only need a certain amount for
your trip back and can they mail the remainder of your order to your
home on the day you arrive. I know I feel like you, I wouldn't want to
worry about a three-month supply going bad if there were an alternative
way of doing it. I call Merck Med. almost 2 or 3 times a week about my
other meds. and I have always been treated like I were their only
customer. I was not crazy about our Blue Cross going with mail in
prescriptions, but now I just go with the flow.
Good luck.
Angera

Nancy,
Sounds like "dry-eye", a common problem in auto-immune diseases. Your
tear film became too thin and when you stare at something like the TV or
computer screen, things will get watery and blurry. Get a tear
replacement NOT a contact lens rewetting drop or anything with a
decongestant in it. If this doesn't solve the problem almost
immediately, see your Optometrist, don't wait for the Rheumy. It's
probably nothing but it's out of the Rheumy's realm.
barry
In answering someone's questions about MTX, I thought of a question
myself. For any of you using MTX, have you noticed any significant
changes
in your vision? I've become quite aware of something and don't know if
it's related to the MTX or not. I don't go back to the Rheumy until next
month so thought I'd pose the question here. Sometimes when I'm watching
television, or reading the computer monitor, everything goes very blurry
for a few seconds. If I blink alot and then close one eye then the
other,
the vision will generally come back and correct itself. This is very
unusual for me. I was watching a movie last night and when the credits
began to roll, they were double lines and blurry; I just about freaked
out
trying to get my vision to come back into focus. Anyone else have any
similar problems?
Thanks,
NancyP
"Freedom of speech is wonderful - right up there with the freedom not to
listen"

Evening,
In answering someone's questions about MTX, I thought of a question
myself. For any of you using MTX, have you noticed any significant changes
in your vision? I've become quite aware of something and don't know if
it's related to the MTX or not. I don't go back to the Rheumy until next
month so thought I'd pose the question here. Sometimes when I'm watching
television, or reading the computer monitor, everything goes very blurry
for a few seconds. If I blink alot and then close one eye then the other,
the vision will generally come back and correct itself. This is very
unusual for me. I was watching a movie last night and when the credits
began to roll, they were double lines and blurry; I just about freaked out
trying to get my vision to come back into focus. Anyone else have any
similar problems?
Thanks,
NancyP

AP Clarifies Vioxx Story
.c The Associated Press
CHICAGO (AP) - In a March 24 story about meningitis being a rare
potential side effect of Vioxx, The Associated Press reported that
the Food and Drug Administration has required Merck to add the
disease to the list of possible side effects included on the
painkiller's product label and package insert.
The story did not make clear that the information has already been
included on the product label and package insert for some time. Merck
spokeswoman Chris Fanelle said the company made the change in 2000.
AP-NY-03-25-02 1456EST
Copyright 2002 The Associated Press. The information contained in the
AP news report may not be published, broadcast, rewritten or
otherwise distributed without the prior written authority of The
Associated Press. All active hyperlinks have been inserted by AOL.

Have any of you PA'ers out there had Weight Loss Surgery, or the
gastric bypass? If so, how did your P & PA react to it.
On another note, my rheumy is changing me from MTX to Arava. Slowly
decreasing the MTX, and am having noticeable discomfort and soreness
in the affected fingers. Which frightens me somewhat. I havent had
this discomfort in a long time! Any opinions on Arava vs. MTX?
Thanks
Robbi

hi everyone - thanks so much for your posts re. my question about having
PA without psoriasis. i'll echo the sentiment of many i've read that it is hard
to deal with the symptoms and the pain on your own... and for me just
knowing that i am not alone or some freak helps.
i'm still waiting for an 'official' diagnosis - but in my humble, non-medical
professional opinion, if this isn't PA - i must be from another planet! my
problem now is dealing with the continued pain (i'm on naproxen which
seems to sort of help) while i wait for an appointment with the
rheumatologist - which will be july or august at the earliest!
one thing i am curious about - has anyone else experienced asthma-like
symptoms that they think might be linked to PA? i don't mean asthma
brought on by meds. it is just that i'm realising that my joint pains and my
wheezing/shortness of breath problems started around the same time.
anyway - i just wanted to say thanks for the support. good luck and good
health to everyone.
caroline

I do seem to detect a small 15% improvement over baseline when we began two
weeks ago..The Kineret Rep has called twice now. Once to set me up- give me
the walk through on the first shot, and a week l;ater she had a lot od
questions for me.
I gave her my tip for those who have an injection site reaction and that is
to use the homeopathic gel called arnica or arniflora. it runs around $7.00 a
tube. I apply a small amount to the area five minutes before the injection
and then put a small dab on the 2x2 pad that I put on the injection site for
around an hour after the shot. I am allergic to bandaids and most tapes, so
I use a special tape too. If anyone wants the name of that just e mail me
privately.
HOw is everyone doing on the Kineret? I would be happy to volunteer to keep
track, but since I still have the vision trouble, I cannot do it. let me know
privately by e mail if you can do it, thanks.T
Thanks to all for all the sharing and caring- we are truly blessed to have
such a wonderful giving group! God Bless you All.
Michelle
Group Founder

I'm tremendously apreciative to all of you who made this message board
interesting and relative enough to keep my attention as it has led me to
understanding of my own condition. I recently stumbled upon the works of Gus
J Prosch Jr M.D. and many of his associates and have found that a lot of the
conclusions I have accepted through my own studies have already been adressed
and in cases clinicly proven. There is a silver lining on the cloud of
rhuematic disease.... It produces a lot of knowledgable sufferers! Orin

Anyone use or have any knowledge of the effectiveness of a
TENS machine with PA or Fibro? I have gone through a month
of physical therapy which is really grueling and wipes me
out. They have mentioned this as another option.
Thanks,
Valerie

Orin said - What that feels like to me is my heart slows
down then squeezes completely empty and holds for a second then beats really
hard the next beat and races the next 2 or 3 beats then is normal for 20 or
30 seconds and does it again. I dont know how in the hell that could be
normal.
Me, too! It's not *normal* but it's not life threatening either. I have
been told I *throw* PACs - premature atrial contractions. Usually due to
stress or an over reaction to something else - meds, coffee is a real
culprit, frustration. You can see them on an EKG strip but heart function
is totally normal, just erratic. I had been completely worked up by a
cardiologist who thoroughly explained what-why-how and assured me it was
completely benign. But I had a bout so severe I took myself to an emergency
clinic and said I know I'm OK but can you make this stop? It felt like
gerbils were running around under my skin and the more I worried about it
the worse it got. The doc said no problem, gave me 10 mg of propranolol and
within 30 minutes the palpitations had stopped. I carry these little orange
pills in my purse and usually use 10 or 15 a year total. Ask your doctor
about prescribing some low dose beta blocker like propranolol (Inderal).
They're very cheap, too. Just knowing you can stop the sensations seems to
reduce them tremendously.

hi all,
i live in sw ohio, and we have either hot or cold
weather, very little in between. and it can be cold
in july and hot in january. yesterday it got up to 66, and
today it is 20 and snowing! my pa stays the same
no matter the weather. stress and tiredness affect me.
gordon, thank goodness you are ok.
susan in ohio

Do any of you have problems of getting severe nausea and loose bowels
with a flare up? I am in that current state now? I had to be
hospitlaized yesterday for rehydration. Unfortunately I am back on
the
same path. I am dehydtrating again because it all started over.
Please
let me know.
Melissa
[Moderators note: Never had that problem myself Melissa, except that the pain
during my last major flare-up was so bad the pain itself caused some nausea.]

Is there not anyone out there that can help me with my previous
question? If nothing else does anyone have similar back problems and
what do you do for it?
Thanks,
Sco

I notice that weather affects me most when it's cold and when the
weather changes. Those are the 2 worst times for me. I live in
Silicon Valley, CA (between San Fracisco and San Jose).
On my honeymoon in Hawaii, I was in Paradise! My P cleared up and I
had hardly any aches of any kind. We were only there 1 week. I know
the sun had a lot to do with that. That's where I'd love to move!

<snip

Hi --
Thanks to everyone who answered my MRI query,
especially Gordon Elliot, who wrote about radio
frequency neurotomy. I am going to ask my rheumy
about that when I see her Tuesday. Turns out my pain
management doctor is something of a jerk -- what can
you do?!
My concern today is the hangover I woke up with. I
wasn't expecting a hangover, as I don't drink! My
head was pounding, my mouth dry. Even after a glass
of water my mounth felt dry. Oh, and my eyes are red.
I have ben having red-eye in the morning for more
than a year now.
All I can think of is Sjogrens Syndrom. Michelle, the
list founder, has Sjogren's and I konw many of you out
there do as well, so I was wondering -- does this
sound like it? My rheumy told me about six months ago
that blood tests indicated that I had "borderline"
Sjogrens, but so far the only identifieable symptom
has been the red eyes. Now I am wondering if these
"hangovers" result from Sjogrens as well -- any
feedback, gals & guys?
Thanks -- RA Harris, North Jersey Highlands
raharris@... -- http://www.wpunj.edu/pa/
njmc@... - http://satipatthana.org/

I have mentioned this a few times in the past how just before i developed
Psoriatic Arthritis, I was taking amino acids including 5-HTP
(L-Tryptophan)... What i didnt know is that hundreds of people developed a
disease simaler to psoriatic arthritis while taking the supplement.. This
is pretty amazing.. Now i'll have to find out how to get tested for this -
"Eosinophilia-Myalgia Syndrome ".. More info -
http://www.nemsn.org/index.html
mike

I'm generally against increased government spending for anything, but
there's a post over on the "rheumatic" forum about potentially
significant reductions ($49 million total) in funding for the "Office
of Rare Diseases at the NIH" and the "Orphan Product Research Grant"
programs. Since I assume PA is considered to be a rare disease, some
of you may want to read that post and contact your Congressmen. The
notice is at:

Hi Everyone,
Nancy, I wanted to let you know how much I enjoyed reading your
letter. If you're not a professional writer, I think you missed your
calling.
I've been a member of this group for 6 months or so, and have read
nearly every posting in that time...This is my first posting.
I've had mild plaque Psoriasis(P)since about age 18. At 21, my nails
became involved...flattening, pitting, cracking, and a yellow cloudy
appearance within the nailbeds. The P has been mild since then...
better in the summer than winter, and my nails are not as bad.
But last May, at age 36, the tip of my right Index finger started to
hurt and became red in color. I had a x-ray done, which was normal.
I took some prednisone and it took the redness and some swelling
away, but the joint pain was still there. Luckily, my doctor
recognized it as possibly being related to the P, and told me to call
a rheumatologist.
It took 3 months to get an appointment...
I was diagnosed with PA in September, and started taking my daily
regiment of Sulfasalazine and Feldene. I noticed that many of my
other aches and pains seemed to be in my joints...my left hip, my
neck, my shoulders. I was a little distraught to say the least. In
November, my right Middle finger started to swell at the tip, and the
index finger was bending in. I still can't straighten it.
Other than make my urine a nasty orange/yellowish color, and turn my
stomach into an aching pit of acid, I wasn't getting a warm fuzzy
feeling about this doc or those drugs.
At that point, I had read many postings of people that had good luck
with Enbrel. I wanted Enbrel! I switched doctors and asked if I
could be put on Enbrel. Guess what...you can't just go on Enbrel
because in NY our insurance won't cover it until you try and fail 2
other drugs used to treat PA...or you could pay for it out of your
own pocket for about $1,000 dollars per month! Needless to say....I'm
on the waiting list for Enbrel.
My rheumy said that many people respond to methotrexate, so I started
it and Arthrotec in December. When I picked up the prescription a
funny thing happened, my insurance covered the whole payment. That's
the first time that has ever happened. Do you think they want me to
stay on this stuff or what!
It's been 6 or 7 weeks now, and I've had some great days and some bad
days. I don't know if the metho...oh you know, is working or not. I
guess time will tell. I'm trying to stretch more and do some
exercising. You can't drink any alcohol when you're taking metho, so
I've got a little more time on my hands.
I've got to go kiss my kids good night. Thank god for them and my
wonderfully supportive wife.
Nedley

I have been having severe pain in my neck and upper back. I am not sure if it
is my muscles or joints or maybe both. The darvocet I have been taking for pain
no longer work so my doctor has prescribed me Ultram. Does anyone have any
experience with this drug? Is it effective?
Thanks,
leslie

One of the list members, Kenneth McFadden, is sending solicitations using
the addresses on the PA list. I've already sent him e-mail but just wanted
you to know.
Moderator's note: At Michelle's request I have removed and banned McFadden from
the list. Thanks -- RA Harris

Nancy P just wrote: Then in
1999 I had major trauma in my life (or it was MAJOR for me). My
husband and I decided to fly out to see my sister (we live in Ga; she
lives in Nevada). To anyone who doesn't understand the concenpt
of 'fear of flying', it would be a piece of cake. For me, it was one
of the most horrible experiences I've lived to tell about.
Nancy, I could not agree more about the trauma. I have always contended that
an accident I had, brought all this on. I had minor aches and pains before the
accident, but NOTHING like the pain from the PA. I really believe with my heart
and soul that the accident brought this on. I understand exactly what you are
saying....welcome to our group! Linda in Poulsbo, WA.

Hi Jayne,
I tend to have a severe case of tonsillitis every year. Sometimes more than
once in the year. My throat gets so irritated and sore I swear I can feel
every dirt particle in the air scrapping my throat. My Dr. gives me an
antibiotic and heavy duty cough syrup and that typically takes care of it. I
hope you get better soon!
Amy

Greetings all! I have thought a lot about environmental toxins being the
culprit, specifically metals, and have begun to drink distilled water part of
the time to see if there is any difference. No striking difference. I still
eat entirely commercially processed foods and drink about 75% tap water. You
mention also that you are in to organic gardening. About what percentage of
the food and drink you intake is pure? ie either distilled or homegrown. and
how long have you been consuming this percentage of pure foods? Laters, Orin

I know most of us have strep alot.............but how bout plain old
tonsil problems. This is my fifth episode of tonsillitis since
November. It hurts almost as bad as my back. ?? Jayne

I drink distilled water. Try that. I keep a glass by my bed for middle of
the night, start drinking it the minute I wake up, and continue except for
brief episodes of my vices (coffee and wine). As for fear of medicine, I
know that too. It about killed me to drink radioactive iodine when I had
thyroid cancer, but would have literally killed me if I didn't. Having been
an organic gardener and health food guru, it took everything I had to drink
that stuff. I still get depressed about the amount of medicine I take, but
have gradually realized that the alternative is much less healthy. I'm
sorry you are alone as a parent right now. Try to look at the blessings
every day with your girls instead of what is missing. Happiness is a
choice. Sometimes it is a choice that takes a lot of determination, but it
will improve your health.
KS Di

I hate to sound like a broken record on Yoga, but it does fit almost every
need. The 3-pack of Yoga for Beginners with Rodney Yee has one tape each
for: strength, power and flexibility. If that doesn't do it for you...move
up to intermediates. That is as much as my college daughter can do and she
is also a kick boxer! Unfortunately, I am just barely up for Gentle Yoga
these days. My recumbant bike on a stationary trainer is the most I can do
some days, but it always feels good after the first ten minutes and usually
gives me several hours of relief from back pain.
Ks Di

Oh come on, Dr. Dan. Give us the story. You know we could use the humor and
you are not likely to run into any of us at church!
Ks Di

hi all,
i can relate to being treated with disrespect, when i had
my liver biopsy. the dr said when it was over i had to lay
perfectly still for 2 hours on my right side. i told him i had
arthritis too bad on that side, and i couldn't make it 5 min.
could i please lay on my back? well, you would have thought i'd asked for the
moon, but he finally said yes,
and was a crab from then until he went in an unnumbed stop,and i felt where he
got the liver and came out. my scream seemed to make him a little nicer!
now, whenever i am in a drs office and the subject comes
up, nurses and drs alike, ask what i have, they have never
heard of it. the girls who work at the dermie all argue over
who is going to be in the room with us so they can hear
about the disease. i recently became friends with a woman
who has ps as bad as i do. our kids do sports, and the
husbands coach so we all together a lot. it is nice to
have a live person to share "remedies" with. fortunately,
she doesn't have the arthritis, but i told her what to watch
for.
for hip pain, my 93 yr granny started having hip pain last
year. she has been fairly art. free, healthier than i am!
she went to therapy until insur was done, now she goes
to a massage therapist. started out once a week, then
tapered off as feels better. she swears by it, and i could
tell a difference in how she gets around. heck, i don't move
fast enough for her. i was suppose to be her go-fer at
thanksgiving, she wanted to cook, but she would push me
out of the way, jerk things out of my hands!
oh well!
have a good day
susan in ohio

I am too tired to respond to everyone who were so kind to give me such wonderful
support and advice but I want to say thanks. I really don't know what I would
do without this group. You guys are more caring and understanding than anyone
and I really appreciate it. I know I need to check into getting a psychologist
or psychiatrist. I am not getting as much help as I need. There is always the
money issue though. I spend so much on dr.s and meds as it is. Plus all the
work I miss. I hate to add another bill (I know I have no choice). I often
worry about my job. I miss so much work - either sick or going to the doctor
every week. I really don't know what they think of me. I know they can tell
when I have my bad days. There have been days when I should have gone home and
they have asked me if I was okay so at least they know that I am not faking. I
think taking some time off from work would benefit my health tremendously but
that is not financially possible for me. I am off the prednisone, finally. I
know that it made me mean. I am hoping I can get back to being myself now.
Hopefully the zoloft will even me out (if I can get through these first couple
of weeks until my body adjusts). I guess it is all about adjusting (being sick
and all). Well, having this forum to vent out all my anger/sadness helps. I am
sorry all of you have to put up with my whining! At least it gives my family a
break ;-) I will try to to keep a better perspective on things. Thanks again.
Wishing everyone a pain free day,
Leslie
Leslie - I can relate to a lot of the emotional outbursts you described. And
the anger as well - I've taken things out on the hubby quite a bit. Are you
on prednisone or any other steriod? Because I was worse when I was on them.
I think just the very nature of PA with the constants aches and lousy feeling
is enough to make us cranky and emotional, but add certain drugs and we lose
it.
I hope you're feeling ok today,
Tracy

Please visit our Psoriatic Arthritis informational web page at:
http://www.wpunj.edu/icip/pa, which Professor Robert Harris, one of our generous
members has set up for us.Last year in August 2001,our memberknown
as:"Cornishpro@...", Jack Nicholas, has and continues to do extensive
research and publishes the Psoriatic Arthritic Research Newsletters. Many
thanks to Jack. If you ever miss it, be sure to check the archives!
Let's hear from some of you lurkers out there!
G-d's Blessings and Peace in 2002.
Your founder and friend,
Michelle Atwood- Stack

Hi all. There is another PA list called PA-social, which is not so
focussed upon our disease and its treatment, but rather a list for
off topic chat. PA-social subscribers will receive a posting telling
them about this list (a file has been uploaded and will be sent out
fortnightly) so would the owner/moderators here consider doing
something similar? The address for PA-social is:

Okay, If you go to www.intellicast.com and click on USA radr and then
the loop...for those of us in the States.
How many are having aches and pains from this major storm system?
I have my hand raised high and just popped a pain pill.
PatB

I know how it is when your hard drive crashes and
burns...I was without my computer from Jan 7th - the
12th for the same reason.
I like your little moderater notes...they are fun and
helpful.
This is the coolest group I have ever been a part of.
thanks for all you do :-)
~Karen R~
=====
Image by FlamingText.com

I just wanted to second your recommendation for *gentle* yoga as a
wonderful way to find relief. For me, it not only helps with
flexibility and strength, but acceptance of my body with all it's
limitations - which as many of you know if very difficult with PA.
For anyone who's interested, there's is a new book out by Rodney Yee
titled simply "Yoga" which you can find on Amazon.com. It's full of
gentle yoga poses - no shoulder stands, thank god! and also,
interesting text about the philosophy of yoga. It's really helped me
the last few weeks.
Take Care Everyone...
--
Kristin Boice
Health Education Program
University of California, Davis
Phone: (530) 752-6336
E-mail: keboice@...
http://healthcenter.ucdavis.edu

I just found a new Yoga tape at the health food store: Gentle Yoga for
Beginners with Suzanne Deason. It is from the Living arts company. When I
have too much pain to do my regular tape, this will be perfect. It works on
focus, stretch and flow. It starts with a 10-minute warm up, followed by 18
minutes building strength, flexibility and tone, and finishes with a
2-minute deep relaxation. The great thing about Yoga is you only stretch as
far as is comfortable, so many levels of strength and flexibility can
benefit from the same tape. I do these tapes with my high school students
as a fun activity during their extended lunch period on Fridays. Although
they are young and don't have arthritis, they still feel challenged by the
tapes. I get an afternoon almost free of back pain.
Kansas Diana

I wanted to start by saying thank you to all the members of this group. It
has been a tremendous help. While this is my first posting since I joined, I
have come to rely on the daily messages as a source of strength and
inspiration. As you all know, it helps to be contact with others who know
exactly what you are going through, especially when you are having a bad day.
A recent thread of discussion has been how many younger people with PA find
it difficult to cope emotionally and or socially. I am in my 20s and have
been living with PA for two and a half years. One of the hardest things I
have had to deal with has been others now see me as the girl with PA and not
the smart, funny, hardworking person that I want them to see. When I have a
bad day the PA is all they see and when I have a good day they seem to be
waiting for the next bad day. I am grateful for their sympathy and
willingness to accommodate me, but I am still the same person that I was
before the PA. I still like to do many of the same things, granted rock
climbing and long hikes are now off my list, but I still know how to have a
good time. I may have PA, but it doesn't have me.
Most of the time my positive attitude baffles people. They say that they
can't believe how well I'm dealing with it. They say that if it happened to
them they would be angry. I am angry. I have had to make major adjustments
in my life and even on my good days I am never completely pain free. It is
what we do with our anger that is important. I choose to channel my anger
into being proactive about my care and learning as much as I can about this
disease.
Thanks for reading,
Amy in San Antonio

Hey all...Sorry I haven't e-mailed in ages it seems, but I have been so busy.
Things have been very hectic and crazy around here. I got that job that I was
telling everyone about and with having a job your life becomes extra busy. All
is going good though. I have gotten used to sleeping days and working nights,
kinda hard at first, but you do get used to it eventually. I hope everyone is
doing good. Gillian hope you have been having a lot of good pain free days. I
have been having some bad days only because about 3 weeks ago I had a car
accident. This guy decides he wants to go straight in a turn only lane and I
was in the lane to turn or go straight in and I was turning, so needless to say
I got hit in my drivers side door. Which tore some tendons on my right side. I
am going to a chiropractor and have been for about 3 weeks or so. I am getting
better very slowly, and it will take time I know. But because of that I have
been feeling a lot more pain than usual and alot of numbing and tingling in my
back and shoulder areas. Also I have found something that is a natural
supplement called "Relieve" that seems to me to work better than taking Vioxx
did. I like it and it is natural that is a big thing that I like. So other
than that I am doing good. So anyways always want to say hello to all the
newbies. Well take care guys and hope to chat soon.
Love and hugs, Pam

Thanks for the reply,I will certainly give the Alfalfa tablets a
try.I have been using Red Clover on advice from my doctor but have
found it to be of little help.I thought as most of the members were
in the USA I would see if there was any new treatments from across
the "pond".Have a good day,Mike.--- In

Hi All, I am taking diclofenac (150mg a day) besides my MTX. I have trouble
with my joints at the moment, they seem to be in a flare-up. Previously I
have been on Relifex, tried celebrex. Anyway, I have an appointment with my
doctor on Monday to see about trying another anti-inflammatory and wondered
what others might be worth trying? I am in the UK, so perhaps not all the
ones available in the US are available over here. What do other use, what's
seems to be the general opinion on the best ones?? I'd appreciate any
feedback
Thanks
Cathy

I am actually quite surprised to see people saying their
dermatologists are prescribing methotrexate. MTX is a disease
modifying drug, also used for cancer patients in addition to
arthritis. If the psoriasis is severe, I could then see
dermatologists prescribing it. Otherwise, it should probably be your
rheumatologist since they should be more familiar with the correct
blood tests and effects.
It should be used carefully and taken with a folic acid supplement
(and milk thistle for extra liver protection). You should discuss
taking methotrexate with your rheumatologist if you're taking it for
arthritis. If you're psoriasis is severe, consult with your
dermatologist too.
As for whether to take it or not, in the end it's your choice. Be
aware that there are health risks, but sometimes the benefits are
worth it. I've kind of had iffy luck with the MTX. It worked pretty
well in month 3, but since then hasn't worked great. We upped my
dosage (again 7*2.5 mg tabs/week now). I'm on the list for Enbrel
too. Have better hopes for that! ;)
Keep all doctors you see in the loop. Ask advice of every one of
them.
If you're doctors aren't communicative or supportive, you should seek
a new doctor. Your health is your responsibility. Consider doctors
your health partners, rather than end all sources of god-like
information.
With all the health problems many of us have, I'm sure many of us
have learned that lesson! ;)
You should be in command of your health and your treatments.
-Meghan

I am 8 hours ahead of Texas time, but I noticed that no messages were
posted on Friday... so far, for me it is Saturday and almost 5
p.m.... just wondering where everyone is. Hope all is well with
Michelle (our founder), the moderators, and all you other PA
members. Lisa #2
[Moderators note: Don't know about Michelle, she seems to be having a really bad
time of it, but us moderators were probably just involved with other things over
the holidays - I know I was]

woops. I created some confusion. My experiences with plaquenil were not
bad, just non-productive. I had the infections while taking vioxx. I had
a rash with both celebrex and vioxx.
I'm taking minocin and although I'm not getting better, I'm not getting
worse. I'm really not in bad shape. More fatigue and knee problems than
anything else. I'll ask my Rheumatologist about doxycillan when I see
him. I do have confidence in him. He is aware of just about anything I
ask him re: PA. Perhaps he reads his journals.
Best wishes for the new year to all,
Jim

Hello everyone,
I hope that everybody's holidays were filled with good health and
pain free days.
I don't mean to sound ignorant but what exactly is GERD and MTX?
I am fairly new to the site and do not know all the lingo.
Also, has any of you ever had a doctor kinda outline the progression
of the disease? I understand everyone with PA is different and each
of us are like an island unto ourselves. But, I am newly diagnosed
and am not having nearly the level of discomfort or been on the
strong meds for this. Right now I am on Piroxicam for the pain and
it seems to be doing the trick. I am noticing that when I do feel
pain it is becoming more wide spread, multiple joints now instead of
two. I am on Dovanex topical for the leision and also, having
Phototherapy twice a week. The Phototherapy has not gotten rid of
all my skin leisons but, they have gotten alot better.(at least I
don't feel like I need to wear a bag over my head when I leave the
house)
And lastly, has anyone had trouble with their thumb/wrist area being
sore with the ring finger to the thumb becoming numb? Is that part
of the PA or could it be something else? Sometimes my hand gets to
tingling so much it start to itch (especially my finger tips)
If anyone could shed some light on these questions I would surely
appreciate it.
Ann from Indiana

I was doing yoga for relaxation and exercise long before PA kicked in. It
is still a wonderful program. I feel less pain in the joints and more
energy when I force myself to do it. I have several videos from "Living
Arts" My favorite ones are about 20 minutes each called Power Yoga for
beginners with Rodney Yee. My massage therapist led a group at our church
for several years, but her teaching now keeps her from doing it. I need
more self discipline to make me do it. For right now, I enjoy my recumbant
bike on a stationery trainer. Good luck. Diana in KS

It's extremely hard to speak about personal relationships with
immediate family, extended family, friends, co-workers. When I first
started researching disability issues back around 1995 - when I first
was feeling pain bad enough to take me off my job, I learned the
chances of a marriage failing after one spouse developed a moderate
to severe disability was running nationwide above 85%.
Around this same time, 77 injured employees including myself were
arguing with the largest automotive manufacturer in Tennessee
(Saturn) leading to a U.S. Federal lawsuit for disability
discrimination that will most likely reach the U.S. Supreme court
sometime next year. We are winning 2-0 but power and corruption are
on our heals. Sometimes the need for justice takes on a life of it's
own. It's during this time when I unknowingly began putting my
idealogy and hopes before my wife and two children.
It happened very slowly at first...I was consumed with my work
unknowingly letting it comsume me. The PA pain has never waned in the
6 years I've had it. My marriage couldn't wait for the final verdict
or the best medication and after 21 years my wife had tired of
watching me kill myself emotionally and physically. And so the
marriage desolved unto itself last August.
We both have moved on separately and share our children equally.
There is still pain in our eyes as we glance at each other
occasionally. There are also loving remnants of a long relationship.
I guess my point is that no matter the relationship with your spouse,
make every effort to give a little time and love to all those around
you. Give them the benefit of the doubt that they will eventually
come around and see the world from your eyes. Nobody wants daily
reminders of their own mortality, but love, courage and respect can
sometimes overcome their fear and bring new hope to their hearts.
Marriage counseling can help, but you need to get there early. Don't
let yourself become completely dependent on one single human being.
Heaven help those that are. There are resources for everyone though.
- Jim
P.S.- Saturn Corp. worker strife is documented at www.tadr.org

Has anyone experimented with teas to help with their PA?
I just started drinking one that I picked up at the health food
store and it supposedly helps ease joint pains. Something along
that line, anyway. So, for the last four days, I've felt less pain
than I have in weeks. Is this possible? A snow shower dropped by
the other night and I barely felt it.
Am I experiencing a remission that would have happened anyway, or
could this tea actually help?
-Diane

Can anyone who has had their toenails permanently removed please e-
mail me at kerilie@...? I am considering having 4 removed because
my pain is disabling.. Is the pain completely gone and do you have
problems getting dirt (sock lint) under the part where the nail meets
the nailbed? Thanks very much kerilie P.S. I am so grateful for this
group I am learning a heck of a lot of stuff from you people...
thanks again!!

Hi all --
I'd like to spend part of my vacation time re-designing and updating
the PA webpage at http://www/wpunj.edu/pa/
It is currently very out of date -- between teaching, running my
technology program, managing a meditational study group, sitting on
the executive board of my union, and writing two books I have not had
much time to deal with it recently! But I have been doing some art
for the page and have been thinking about what will make it better.
What I need from you, the almost 900-member, world-wide community of
PAers and their loved ones, is your ideas for what you would like to
see in a page. Pictures and mini biographies? Sure. Links to PA
(and Ankylosing spondilitis, Sjogrens Syndrome, etc.) resources?
Sure. I have some recipes up -- does anyone care about them? Want
more recipes, or do you want to bag it totally? What do you like and want to
continue? What don't you like about the current page? What else
would you like to see?
What would help you and your loved ones? Tell me and, if possible, I
will incorporate your ideas into the page. Just sent a message to
the list with the term "PA Webpage" in the subject line.
Thanks --
RA Harris
North Jersey Highlands
Psoriatic Arthritis Listserv & Webpage
raharris@...
http://www.wpunj.edu/pa/
North Jersey Mindfulness Community
njmc@...
http://satipatthana.org
Asst. Director for Instructional Technology, IRT
William Paterson University of NJ, Wayne
harrisr@...
http://www.wpunj.edu/stc/

Just want to thank all of you who responded to my questions about
greasy hair/Ap-treatment.
I still dont know what to do about my options of which medications to
start on, but lucky me, I dont have to decide before end of january,
and I can "lurk" on your postings a bit longer.
Most of what you all write is understandable, but when you do write
something very technical, it's not that easy to follow.
So please, if I ask you all "stupid" questions, hopefully you will
remember that it might be a language-problem and not a "brain-dead"
norwegian!!!
Wish you all a painfree day!
From even colder Hege in Norway, about -10 degrees today.
By the way, what does LOL mean???
[Moderators note to Hege:
It means Laughing Out Loud. Some common chat abbreviations are listed at:
http://searchwebmanagement.techtarget.com/sDefinition/0,,sid27_gci211776,00.html
Note that the above URL address *should* all be on one line. It most likely

I posted my first message to the list last Friday, then life got in the way
until today! I almost forgot how to get back here! LOL. Well, thank you all
for the feedback to my questions. I start the Azulfidine tomorrow. I am
nervous about it, but I want to try to stop the progression of this disease if
possible. Although I don't want to have any kind of arthritis, I am glad to at
least have a diagnosis. My rheumatologist says that I may not get the lesions
but that 80% of people with PA do get the psoriasis too. Yuk! I don't want any
of it...but will take it one day at a time. Some mentioned that their doctor
gives them Phenergan for nausea. I forgot to ask my doctor for something just
in case I do get nausea with the Azulfidine, but my regular doctor is here in
town and he will prescribe for me if I can't get in touch with my rheumatologist
who is 120 miles away. There are no rheumatologists here where I live so I have
to drive that far to see her. She says I will have to see her every 3 months
for blood work. My cousin has had psoriasis for about 40 years. Years ago they
gave her Methotrexate. All her blood work was done every 3 months and came back
fine all those years, but then they requested she have a liver biopsy and lo and
behold she had liver cirrhosis! Now she needs a liver transplant. I am also
taking the Prednisone 5 mg a day for another 4 weeks..just long enough my
rheumatologist says to get some Azulfidine in my system...and then I have to get
off it because being a diabetic too I can't continue as it has made my blood
sugar rise. I had it controlled to normal until I started taking the
Prednisone. Bummer! Seems like you get something working great for one thing
and something else flares up!Thanks again for the great welcome and feedback.
How many of you have the psoriasis and PA?Sharon (nanasewpretty)

Hello all, in both the PA and the rheumatic e-groups;
A couple weeks or so ago I wrote asking if people who had PA _and_ were
having success with the antiobiotic protocol could confirm or deny what
I thought I was seeing on these e-mail listings/boards: Namely, that the
folks with PA who were doing pretty well on the AP were on doxycycline
as opposed to minocycline. First, let me say a grateful "thank you" to
everybody who posted or wrote me offline. I appreciate it, and to anyone
else who has PA and is on the antibiotic protocol and doing well, if
you'd like to let me know which therapy you're on (mino as opposed to
doxy or vice versa), that would be great.
Now I've read that, theoretically, these 2 aren't very different from
each other; I've also read that doxy is cheaper than mino; I've
furthermore read that mino. is supposed to be stronger than doxy. Well I
don't know about all that.
But here's the result of my having asked the question:
Of the 8 people who wrote, 6 are on doxy and 2 are on mino. [I myself am
also on mino., but I'm not doing noticeably well on it, so I'm not
counting myself.] I suppose that I should theoretically take into
account two people who didn't write but their stories are posted on
rheumatic.org; they both take (or took) mino. for their PA and had
success. That would make it 6 doxy; 4 mino.
The results do make me wonder about the relative merits of the two;
also, although I didn't ask this, it seems as though more PAers who take
it on an every-other-day basis (or M-W-F), rather than 7 days a week,
seem to do better.
FWIW. Your mileage may vary. And all that.
Again, thanks to everybody who wrote.
--Louise
[Moderators note: I'm also on Minocin and am doing fine (100mg, 2X on MWF)]

HI KEN
MY NAME IS DANNY IT SOUNDS LIKE WE WENT THOUGH THE SAME THANG. I
HAD PSORIASIS FOR ABOUT 16 YEARS.IN DEC OF 2000 I STARTED TO HAVE
ALOT OF PLOBLEMS FIRST IT WAS MY FEET, THEN MY KNEES,THEN MY BACK
,AND ALL OF TIME MY FD DID NOT KNOW WHAT IT WAS THAT WAS MAKING MY
HERT LIKE I HAS.IN OCT HE SENT ME TO AN ARTHRITIS DR SHE SAID IT WAS
PA. IN PUT ME ON METHOTREXATE AND SULFASALAZINE IT TOOK ME ABOUT 6
WEEK TO GET OVER THE METH SIDE EFFECTS BUT NOW I FILL ALOT BETTER. I
STEIL HAVE MY BAD DAYS BUT NOT AS MANY.
THANK YOU
DANNY

Just a test, I haven't gotten any emails all day.
Liz
[Moderators note: Hi Liz, why don't you ask Michelle about becoming a moderator
so you can help approve messages when the rest of us get lazy? ;-)]

Sorry for being a lurker for so long but a lot has been going on!
Jerry has been on Enbrel for almost a year now and is still doing
awesome. He feels great and has a whole new outlook!
How many use different needles for Enbrel than the ones that come
with the kit? We have had lots of problems with dull needles and
asked the dr for an rx for different ones. Well, we got an rx for 25
gauge 1 inch needles which are expensive and our insurance doesn't
cover. The dr said that insulin syringes are not good for Enbrel
because of the size of the molecules...any comments welcome.
Now about me-I stopped using Enbrel in early October because it just
wasn't working because...
On November 2nd I was diagnosed with Young Onset Parkinsons Disease
(I am 37). It was a shock but now that I have learned more about PD,
it all makes sense, even the (mis)diagnosis of arthritis. The neuro
that diagnosed me said that it is not uncommon for younger people to
be misdiagnosed.
So now I am on Requip which is a dopamine agonist and am finally
weaning off the Prednisone. Eventually the neuro wants me off the
Prednisone and Plaquenil. I have already been able to reduce the
amount of Vioxx that I have been taking. I went from 25mg twice a
day to just an occasional one now.
Well, that's what's been happening with us.
Marcie, YOPD
wife to Jerry, PA
mom to Max, Jake & Jeremy

Thanks for sharing your great news.....
I am feeling so good, that I just want to alert
everyone out there, about the significant pain decrease., and the very well
being, that
has occurred for me..glad to hear about your good results.
Please keep me posted about your progress.
Best Wishes,
Nancy:)

This is a busy message board. I appreciate those who responded-
either by email or on here. I am going to the rheumy after the
holidays. I'll be back. Prayers appreciated! Have a blessed holiday
season all.

Thanks You!
Original Message:

This is somewhat off topic for this group (I ran across it over on

A while back I asked if anyone else was having a problem with
tinnitis. From the responses it seems to be a fairly common problem.
I've been told that NSAIDs can cause it so I tried cutting down and
then changing to another one (twice) to no avail. Do any of you have
any suggestions on what might stop it? I find it VERY annoying. Any
help would be apprciated!
Cynthia

Just as a quick comment, has anyone noticed how small some NSAID
tablets are?
I really struggle in the morning to get them out of the packet... The
number of times I've dropped them in the sink (put the plug in the
plughole).
Aspirin, paracetamol and ibuprofen seem to come in decent tablet
sizes, why don't mobic/vioxx?? Or, are these tablets not designed for
people with arthritis in their hands?
John

I know my immune system is lower because of using Enbrel. What are
people taking for herb/vitamin supplements.
thanks,
scott

Thanks for responses re chest pain. I did a search and found a great article on
Costochondritis and it is exactly what I am experiencing. It says not to overdo
it as any strain will aggravate the problem - so pushing shopping carts is
definitely out. I now have to tactfully bring this up with my rheumatologist as
he has been investigating down a different path. If any one else would like to

Susan,
Very good point and I hope I haven't stirred up a snake's nest...
I avoided glutens for my allergies and had my pain disappear. This
was 15 months ago. I was on top of the world.
Nine months ago I had a blood test to diagnose which items I had
allergies to and which I had intollerances to. I felt even better.
Eight months ago we had a disfunctional relative and her hyperactive
2-year old son move in our house for 7 months. The stress pushed me
over the top and I've gotten my worst ever flare-up. It's how I
became diagnosed with PA last month. I hurt like crazy and somedays
I sleep more than a newborn baby.
I won't say that gluten is at the root of PA. I think genetics
are...and I don't advise everyone jumping onto the gluten-free
bandwagon. It doesn't hurt to rotate and vary ones diet. I know
that being gluten free helped me, but as you can see, it's not going
to prevent getting a nasty flare-up.
In my enthusiasm, I hope I didn't mislead anyone into thinking that
gluten-free was a cure...it's merely an option.
Take care,
Diane C

Hi everybody,
I had my sister-in-law come over on Saturday to help me with my first
shot. We watched the video together then prepared the solution. I
was pretty intimidated at first, but it was no big deal. I took my
Indocin shortly after because basically, it was time to take it. I
felt a little funny afterwards (light headed), but I was sure it was
just from the Indocin. I took a little nap in the afternoon and when
I woke, I felt like a million bucks!! It may have been a placebo
effect, but I didn't care. I haven't felt that way in a long time.
Sunday, I woke up still feeling great. I met with my mother and
brothers later that day and they noticed how great I was feeling.
Later on Sunday, I was able to stay out in the cold day, taking care
of all the leaves, and developed no pain from the cold and the
chores. I'm hoping from the effects I am feeling, that Enbrel is
going to be my miracle drug. I am finally seeing a light at the end
of the tunnel.
I hope everybody gets to feel as great as I do today!!
-scott

Hi folks,
those of you who are touting that gluten-free diets made you pain-free, isn't
there a lab test you can ask your doctor to perform to confirm that indeed
the gluten is the root of your problem? I'm thinking it would be easier for a
PA sufferer to know that firsthand and then go on the diet, rather than not
have the confirmation and painstakingly regulate the diet (which sounds hard)
on a trial and error basis.
Thanks all.
Susan

This topic is something near and dear to my heart. I've been gluten
free for over a year, and can tell you I felt better only couple days
after giving up wheat. The good thing is at the time, I did it
because I broke out in an allergic rash to glutens. I didn't know I
would feel 20 years old again after getting glutens out of my system.
Here is a site loaded with recipes and ideas for being gluten free:
http://www.delphi.com/celiac/start
There are several cookbooks listed on my site:
www.delphi.com/foodallergy1 that provide good ideas for going gluten
free.
Corn tortillas make good substitutes for hot dog buns. I eat rice
cakes and there are very good bread mixes for sale at health food
stores. Same with cake/pancake/cookie mixes. The celiac site also
has resources listed for on-line gluten free merchants. I've
purchased goods from vendors in the US and Canada. I haven't been
disappointed. I've made my own gluten free mixes and stored the
flours in the freezer for use later.
I am allergic to just about every member of the grass family,
including sugar cane. So if I can make something edible, you all
certainly can! :-)
-Diane

notice that depression precedes your flare ups?
Susan

I live in retirement in a sub-tropical area of the Queensland coast,Australia.
I moved here to escape the cold and dampness down south which increased pain.
However, from January to March it is very hot and humid here and that seems to
cause increased pain, so I tend to stay indoors with the airconditioner running.
Otherwise the climate and very mild winter conditions suits my PA better.
Incidentally, regarding earlier discussions re wide grip pens, I have just
joined an Australian online seniors club and as part of a kit they sent me,

On Wed, 31 Oct 2001, TADEL630@...
I agree with checking with your doctor, but make sure it's a
rheumatologist. My SURGEON suggested that I NOT take vioxx before surgery
to be on the safe side, but he was not as familiar with the drug as my
rheumy. My Rheumy assured me it was o.k., and like I said, everything
turned out fine, and I did not have to suffer needlessly for 2 weeks.
FWIW
*******************************************
RESUME:
Contact Information:
Kristin Boice
650 6th Street
Sacramento, CA 95818
Phone (916) 498-9922
E-mail keboice@...
Summary of qualifications:
* Over two years experience managing Web sites at UC Davis.
* Thorough knowledge of Web scripting and markup languages, Web
browsers, and Web graphic optimization tools.
* Advanced knowledge of computer imaging and layout applications,
including Adobe PhotoShop, PageMaker, Quark, Illustrator, digital scanning
equipment, and Web authoring tools.
* Responsible for creation and production of marketing and patient education
materials for Student Health Center and Health Education Programs.
* Experience writing and editing educational, administrative, and promotional
materials .
* Excellent interpersonal/communication skills.
* Excellent design and layout skills.
* Proficient on both Macintosh and PC environments.
Related Course work/Training:
1998-1999, UC Davis Extension, Web Development Certificate program.
Completed course work includes: Web design and development, Web page
scripting (Javascript), Web database applications (ASP), and photoshop.
Education:
1989 - 1992, University of California, Davis.
Bachelor of Arts in studio art and cultural anthropology
Professional experience:
1999 - 2000, Cowell Student Health Center, UC Davis.
Title: Graphic Production Specialist
* Responsible for management and development of Student Health Center Web site.
* Manage, edit and create content in coordination with health care
providers and administrators
* Create site navigation, layout and design
* Create and optimize graphics for the Web
* Track site users
* Convert educational materials and medical forms to HTML and PDF documents
for online access
* Assist in creating guidelines for evaluation of health-related Web sites
* Assist in market research for future development of site, including
surveys, and student focus groups
* Develop marketing strategies and materials for Health Education Program
and Student Health Center.
* Participate in creation, review, and responsible for final layout and
production of ads, posters, flyers, educational materials, and Web site.
* Supervise 4-5 paid student reception positions as part of office management
responsibilities
1997 - 1999, UC Davis Medical Center, Sacramento, CA
Title: Administrative Assistant, Web Administrator
* Responsible for department Web site, including content development,
layout and design
* Responsible for on-line response to public inquiries
* Responsible for final layout and production of materials for use in
academic conferences, faculty lectures, patient education, and public events
* Edit and proofread academic manuscripts and abstracts for publication in
peer reviewed medical journals
* Compile research data to create posters, graphs, tables, and reports for
publication and public presentation
* Serve as department technical support coordinator.
1995 - 1996, PAR Environmental Services, Inc., Sacramento, CA
Title: Archeological Technician
* Assisted in all aspects of cultural resources investigations for government
contracting firm, including: writing and preparing descriptive reports,
business proposals, and correspondence; preparing forms for state review;
and creating illustrations and maps for use in publications.
* Coordinated meetings and travel arrangements for designated projects.
* Assisted in historical research, including library, government agencies, and
oral interviews.
Web sites managed:
1) Cowell Student Health Center, University of California, Davis
http://healthcenter.ucdavis.edu
* Coordinate with faculty and staff to create and manage content, and
assist in creating guidelines for Web site evaluation.
* Assist in developing student surveys and focus groups for future
development of site.
* Convert educational pamphlets and medical forms to PDF and HTML for use
on the Web.
* Track site users.
* Research and provide consultation regarding Web development, tracking,
and database applications.
* Create and optimize graphics for use on the Web.
2) University of California, Davis, Medical Center, Division of Emergency
Medicine
http://emergency.ucdmc.ucdavis.edu
* Coordinated with professors, staff and Division Chief to create and
manage content.
* Responsible for site redesign following UC Davis Health System Standards.
* Created and optimized graphics for the Web.
* Updated and maintained Web site as necessary.

A wide grip pen and pencil holder is available which slips over the top of any
pen or pencil of normal thickness. Similarly, there are slip-on wide grip
holders for cutlery which I find useful when the hands are playing up. You
should be able to obtain them from an aids-to-daily-living outlet. A
consultation with an occupational therapist to assess ADL requirements can also
be beneficial.
Regards, Gordon

Does anybody with PA have any info on wobenzyme. Its supposed to help mostly
with inflammation.
Curious??
Keith

Heather writes:
"I also have it pretty bad on a finger where, believe it or not, the only
source of relief is to put
that damned joint in my mouth and chew on it."
I've got a springer spaniel that I'm trying to break of doing this same
thing! He chews his paw until it's raw.
I've had some success with similar itching on my hands and feet by using
an OTC moisturizer called Eucirin but I think any moisturizer might help.
Dry skin is common to the types of autoimmune diseases we are dealing
with and the problem may be no more complex than that. There's an
expression I've used for years: "If you hear hoofbeats, don't look for
zebras". Try the moisturizer route and see what happens after a few
days.
barry
This e-mail created with 100% recycled electrons

Hey guys...Well so far things are going much better this week...I am still
recovering, but am getting better...Now I am trying to fight off my allergies,
but that is a challenge in itself...At least my PA is not bothering me a lot
this week...I am gonna be getting a job working 3 nights one week and 4 the
next...It will give us some well needed extra money, which I am sure we could
all use...:) So you probably only see me responding from sunday to wednesday
then I will probably disappear and come back...wanted to let everyone know, but
I will still participate...I also wanted to say thank you to everyone for the
well wishes...My throat is much better after almost choking, but I will tell ya
all candy is gone for now and probably will stay that way for a while...Chat
later guys...:) Pam

Hi Kris...I saw my RD today. Evidently the trial for the new drug I mentioned
was canceled because it caused some problems in the brains of mice in a toxicity
study. The same company has another drug under development that is a HTF
inhibitor like Enbrel but promises to work better and is a pill. He wouldn't
give me the details yet other than the basic science and it is in the pipeline
with clinical trials probably 6 months out. If I can get the company and the
project number I'll let you know in the future. If you spent some time you
could probably find out by looking at biotech company project lists.
I also spoke with him about the Prosorba Column. It was developed right here in
San Diego. The reason it is not more widely known is that it came on the scene
at the same time as Enbrel and Remicade. You have to have it twice a year and
it cost $17K per treatment for an annual cost of $34K. The insurance companies
will not cover it. It is used, however, in the most resistant cases of RA. He
wasn't aware it was approved for PA. Also he said the column is covered with a
manufactured bacteria that attaches to the HTF removing it from the blood.
Frankly, he said (like so many of our treatments) they really aren't sure how it
works. Some of the researchers say it actually works by putting some of that
bacteria in your system. Then he got really technical and lost me. He called it
new and weird and would only use it as a last ditch effort. And he isn't
conservative. The company that developed the technology had to sell it to a big
transfuser company because it wasn't profitable in competition with the new drug
therapies. Anyway, that's the state of the art as I know it. Hope you're
feeling better after resuming the Enbrel. He said I'm doing very well
considering. Seems that Enbrel is my drug. At least for the moment. RGDS
Ronnie E.

The advice your husband got about going on Metho was probably good advice
provided you are done or not considering having children in the near future.
Metho is one of the first drugs that works well and is tried for PA. There
are others like Sulfalazine, Plaquenil, etc... but they do not have a good
success story like Methotrexate. When taken with the appropriate medications
for the expected side effects the methotrexate can work for a good few long
years. In my experience we all need to buy time with each drug along the
continuum, because sooner or later they all stop working. Jumping to a
newer, very expensive drug like Enbrel that is really reserved for only
those who have "failed" treatment with at least two to three other drugs
first is not a good idea. You see, eventually, he will probably be in the
boat of "failed" treatment category- not being pessimisistic = just
realistic. It is wonderful that he is able to exercise and live life to the
fullest so much still.
I would recommend taking the doctors advise as soon as possible, because
joint damage is permanent and irreversible-short of joint replacement, and it
sounds like he has lost quite a bit in his hands the last year. The Metho
should hopefully stop this process. Ibuprofen-exercise-no pain med in the
world will. Only those drugs they classify as a DMARD - disease modifying
anti-rheumatic drugs. I hope I did not scare ya, or make you less than
optimistic about the future, because now the drugs are really beginning to
improve, and things are getting better each year for us with PA,
unfortunately, we have to bite the bullet and take meds that we do not want
to take due to nasty side effects- but as far as I have ever been able to
tell with all my 20 years of experience with this disease and three years
running this group, there is not much else available that works consistently
for as many people than the DMARDS. Sure once in a while we get someone
telling us that such and such cured them, but it is either a lucky miracle or
a snake oil salesman trying to play on our desperation to get well.
Please keep coming on in to the site to ask questions and encourage your
husband to visit too.
Michelle
PA site founder

Dear Duncan,
Several members have brought to my attention that you have never d iscussed
your own situation with PA in the first person. In addition , although you
are a font of information on a lot of newer and controversial treatments,
and we do appreciate information, per se, it is only acceptable when shared
by co- members who also suffer with PA ( who are in the same boat.) I need
to be very careful not to be seen as dispensing any medical advise, and I do
not notice that you put a lot of disclosures and disclaimers on the material
on the stuff you post, and frankly this makes me very nervous.
Dear Duncan, unless you are a co- PA sufferer like the rest of us and you can
tone down all your advise giving of controversial treatments without all the
appropriate disclaimers, I am afraid I will have to ask you to unsubscribe
yourself from the group. Let me know what your story is and we can discuss
this again if you wish. Of course, if you unsubscribe,I will know right
away.
Good Luck to you.
Michelle S,
List founder

Is it just me is it not possible to post files/photos to this group?
There are some interesting pieces of information that could be put in
the files section but I could see no way to do this?
Can someone let me know why?
Thanks in advance (tia)
John (29, Leicester UK - newbie!)

The most fascinating ( if it can be described that way) thing about this
disease is how DIFFERENTLY it affects each one of us and how DIFFERENTLY the
various medical treatments work on us. I first started with skin lesions in 1974
which were missed diagnosed as eczema. (I thought I had contracted a parasite
from maintaining a marine aquarium. ( that's my little spin on the
microbe/parasite theory). My rheumy believes in trying numerous types of
treatment including herbal remedies. We tried Evening Primrose oil, borage seed
oil and /or flax seed oil. None of them gave me any relief of my symptoms. Vioxx
has helped with the stiffness and the mild to moderate pain. I haven't been
impressed with the MTX treatment and my doctor will only use Arava, Remicade or
Enbrel for the most severe treatment resistant cases. I recently asked him if we
could try the antibiotic therapy. I started Doxycycline 100 mg twice daily one
week ago. I'm almost afraid to admit this out loud or "on paper" but I think
it might be working in a positive manner. I'm sure like the rest of you we are
all hesitant to admit when something seems to be working because many times it
seems months later that treatment stops working.
As I listen to the rest of you discuss your symptoms, I think my case may not be
as severe as what the rest of you are experiencing. I am able to go to work.
Granted by the end of the week, "my tail" is dragging. I am still able to do my
own house work and some gardening and I do go to karate lessons. Granted there
are some days when the flesh and the spirit need to be "whipped" in order to get
going but I refuse to give in at this point. There are days when I feel like 82
instead of 52. I do not have severe deformity of my joints. Although there are
days when my fingers look like over cooked bratwurst. My main manifestations of
the disease are the fatigue ( which is annoying), the mental dullness and
forgetfulness and the PAIN. The pain can be very disabling and discouraging. My
skin looks like it belongs to a freeze dried alligator but a decent amount of a
quality skin moistening lotion will usually conceal that manifestation.
I'm glad we are all here to verbalize our feelings and share our experiences
with this bizarre disease.
Charlene

I just wanted to say it drives me nuts how all these people are now buying
american flags and hanging them outside of their houses now...... Why now?
Only now do they feel supportive of their country? The world trade center
has to come down and 5000 people have to die in order for us to show our
support for our country?
mike in jersey.....

I stopped the minocin last week......... I found out I tested positive for
Candidiasis.... And this could be maybe very good news...... Now that i'm
thinking about it , I've had a yeast problem for about 8 years and didnt
know it... And if you read up on Candidiasis and long term yeast problems
, It'll even mention that it can cause arthritis and psoriasis !! and many
other bad things.... So during the last month or so I have been on pure
anti-candidiasis meds like Grapefruit seed extract , garlic , goldenseal ,
Nystatin (prescription) , Colloidial Silver , Aloe Vera Juice , and i'm only
eating Vegetables and drinking sea-salt water..... Mmmm, sounds yummy doesnt
it? Seriously though , During the last week I have had no pain at all.....
This will be absolutely amazing if I am now going to be cured......Knowing
for the last 5 years that I would have psoriatic arthritis for the rest of
my life..... But i'm also kind of mad in a way.....Because if I would of
caught it back then , Then i probably wouldnt of ruined my life during these
years..... All that chemo (methotrexate) that I was on.... I did all this
damage to my body that i probably didnt need too....... I would urge
EVERYBODY on this group to get thouroughly checked out for Candidiasis and
possible yeast problems..... I am also allergic to like so many
foods.....Even though when I eat them, nothing seems to happen.... I found
this out from blood testing of food allergies.....Which is a sign of leaky
gut..... If any of you have ever had yeast problems (infections) , PLEASE
look into this..... Maybe all of us have yeast problems that are VERY HARD
to diagnose if they are occuring internally.... I had a very bad itch in
the groin area when I was 18..... I went to a skin doctor and the moron gave
me a steroidal cream that most likely aggravated the Candida (in which i
didnt know was candida at the time) and then penetrated through my
intestinal walls and into my blood stream.... 3 years later I developed
psoriasis and arthritis..... If only I would of killed the candida in the
first place.....
Mike....

mark, be patient, you will find that this group is very informative and
supportive and helpful. i have learned a lot about different medicines,
illness, and treatment. it has shown me i am not alone with this disease,
and that there are even people like me close to home!
any questions you have, feel free to ask, someone here has probably
already taken it, done it or experienced it. and we don't mind giving our
opinions!
take care,
susan in ohio

Thank you, Steve (you lucky dog, being in FLA!), Jan, Melissa, Cindy,
Sharon and everyone for the encouraging comments and insight about
tanning beds and psoriasis. I will probably give it a try this week
(albeit cautiously). I see my rheumy this week and will also run it
by him.
My psoriasis is annoying and ugly (L elbow and knee), though I am
grateful it is still mild by some PA/psoriasis standards. But as a
massage therapist, I don't want to scare off any potential clients!
:-)
Thank you, everyone!
Bryna

the opinion email is a virus, it was sent to me several months ago.
i didn't recognize the sender, it was actually a member of the group that
i had personally corresponded with one time. the virus picked my address
out of his files. i deleted it, emailed him and asked if it was a virus or had
he sent me an actual email, he said virus. my husband's boss was sent
it from someone else and it got loose. he owns the business and all
the business files were affected. it took days to fix. i got emails from
an unknown person the other day about the attack and scams, but my
general rule is, if i don't recognize the senders name, i delete. so if anyone
writes me from the group, put pa member in subject line. knock on wood,
this has kept me virus free so far!
have a good day all.
susan in ohio

IF YOU GET A MESSAGE FROM US OR ANYONE ELSE, THAT SAYS SOMETHING ABOUT US
WANTING YOUR ADVICE ON AN ATTACHMENT, DO NOT OPEN IT! I THINK THAT THIS IS A
VIRUS, AND THAT IT MAY CAUSE IT TO SEND DIFFERENT FILES TO PEOPLE IN YOUR
ADDRESS BOOK AS WELL AS PEOPLE THAT YOU MAY OR MAY NOT HAVE EVEN HEARD OF
BEFORE.
JUST A LITTLE WARNING FOR YOU.
Maureen

I would like to challenge and encourage members of the group to step and try
to make difference. As I watched the events of September 11th unfold on the
TV screen with a sense of helplessness, I struggled with what I could
possibly that might help. By Wednesday morning I had resolved that I wanted
to do something that would help pull my community together...With one phone
call, the wheels were set in motion to hold a community wide memorial
service. There were those that said "...it can't be done by this Sunday."
I stand in total AWE to the community response ...I have received calls from
several radio stations, local television, newspapers, Veteran groups, the
Police and Fire Departments, the schools throughout the county, the
ministerial association, the florist, Red Cross, the banks... the list goes
on. I do not take credit for how effortlessly this event is coming
together.... 'His' burden is light!... All I can say once again is how
awed I am by generousity of the human spirit. I challenge you to step out
in faith. For in spite of our PA limitations at times, we can do more than
we possibly think we are able. My husband went to one of our local banks
and asked how we could possible start a fund for people to contribute to...
The bank established the "9-11 American Relief Fund" ....People were writing
out checks as the bank was setting it up. People want to help! Sometimes
they just need others to initiate things! Could that someone be you?!
Keep the Faith!
Renee