For those who have Psoriatic Arthritis

Hello everyone!
My family and I are heading south tomorrow for two weeks in Florida.
I don't think I'll have internet access for that time, so I wish
everyone a safe and healthy couple of weeks. Talk to you all soon!
Patty

Hi Maria,
I am 37 also. Just turned 37 last week. I do have high blood
pressure. I have been medicated since the age of 16 for the
blood pressure problem. My first attack of rapid irregular heart
beat was during my first pregnancy. I passed out from it. The
problem continued after her birth. They did tests to see what
was going on and could find nothing. They said I was just having
panic attacks. I was put on a heart medication to control the
palpitations. I still had a few problems but it did get better.
I was taken off of the beta blocker 4 years ago and was really
doing fine until just recently. I wore a heart monitor for 4
weeks. I heard from my doctor this past Friday with the results
AND -- I actually have a heart arrhythmia! I feel vindicated!!
Not that I WANT a heart problem but I was RIGHT!! All of this
time I was telling these doctors that my heart was acting up!
They wanted to just pass me of as an anxious woman! I was able
to catch several irregular heart episodes on the monitor. I see
the cardiologist on Thursday. The heart problem in not life
threatening but it does need to be treated and can be controlled.
My great grand father, grand father, and father all had irregular
heart problems. So I guess it is reasonable to say that it is
inherited. At least I know for sure now!! I will be happy to see
the doctor on Thursday to get a new med. One that will actually
work!
Lee Ann

I know that daylight savings started today but did I miss a month
somewhere? Gillian, our Mother's Day is in May. Of course, all
mothers can use all the special attention that they can get. It has
been raining here all weekend and old Arthur has been giving me
fits. I also would like a treadmill for days when it is too wet to
walk.
Michelle, Im glad that your spirits have lifted. We all know how
hard it is to cope with all the hurdles that are placed in our path
by insurance companies. I will be trying to get some answers from
them tomorrow. Wish me luck.
Allayne

I would like to wish all the Mother's at Onelist a really "Happy Mother's
Day".
I hope that today you will be pampered, allowed to put you feet, have total
control over the telephone, e-mail and television remote control.
Love and God Bless
Gillian

Well, I have gone to two physical therapy sessions now. I know the therapist
well- went to him several years back- he is excellent and kind. So far, he
has managed to turn off a lot of hot spots left over from my last PA flare.
Unfortunately, my back pain is terrible now- the pain in the leg is more
shocky and electricky - it is like he took a kink out of the wiring or
something. Still unable to sit or lay down in bed. Reclining or standing for
short periods is okay.
I decided to pray and ask God to take away all the anger and resentment away-
and he most graciously has. I now believe that there is something he wanted
me to learn here. Could it be that I needed a wake up call in the humility
department, the patience department, and the fortitude department... Going
through this also increases my empathy for others. There is always something
positive to come out of adversity. I feel blessed that God has made me able
to receive his love and his guidance with an open heart and mind. It sure
feels better to be in this frame of mind rather than the way I was feeling a
few short days ago!
God bless you all, and thank you so much for your prayers and support.
Michelle

Hi Angela
Reckon we have all made the same mistake. Got keyed up to exercise, either
to loose weight or kick the arthritis into Hades. Reckon your two day First
Aid course could come in mighty handy, just in case you slip off the
exercise bike. Start off how you mean to go on, five minutes a day, three
days a week and build on that. Before you know it you will be like me,
walking three miles three days per week and feeling the full withdrawal
effects, if you cannot go for your exercise. Mom is thinking about asking
Santa to leave me a Treadmill for Christmas, just so I can keep walking come
what may. She knows what I am like to live with, if I do not get my walk in!
Good Luck and keep me posted.
Love and God Bless
Gillian

Dear Michelle,
i rarely do anything but listen here. my symptoms seem mild compared to many
fellow PA sufferers, but my heart really goes out to you! your insurance
company's refusing to allow the surgery, especially after it was scheduled, is
so typical of what we get for health care these days. it's downright cruel. i
wish you could sue them for mental abuse! just thinking about it sends me into a
flare!
well, i just wanted to express my sympathy and here i am railing about the
insurance industry. i will say a special prayer for you.
with love sympathy
barb

Hi Robert
it is something like a physical therapist with
an MD.<
So I am a CULTCHEEN, no need to rub it in. Whatever a Physiatrist is, please
keep it in America as I have enough problems with the titles over here
already!
Love and God Bless
Gillian

My name is Ellie. I'm a 5th grader at Kolter
Elementary School in Houston. I'm doing a science fair
project to see how fast and how far reaching
communication over the internet is. I need your help
for my project. I would like you to do two things.
First send this e-mail to as many people as you like,
the more the better! (I would love it if you know
somebody in another country)
Second, click below to go to my web site and take just
a few seconds to answer four questions, regarding
where you are from and so forth.
http://www.renredco.com/elliecat
Ellie

Hi Michelle
I have been watching your 'adventures' from across the sea, not that we have
the same medical system here.
However, think positive and 'Do not let the blanks* get you down." *Sure
you can fill in that BLANK for yourself.
Your situation reminds me of a Lady at Moms Club. She joined the club three
years ago and was unable to walk far, let alone join in the club activities.
As for standing erect, forget it. My heart really went out to her, as it was
obvious to me she was not getting better. Just before Christmas we had a
Party, whereupon she beckoned for me to join her, so I did. Seems the
Experts had given up on her drug treatments, nothing had worked, so handed
her over to a Surgeon. She has visited him two days before our meeting and
she was told they were going to 'cut' certain nerves in her spine, total
pain relief. She asked me what I thought? I said, "Well if you decided to
have this drastic form of treatment, you will have to be careful when having
a bath. Without feeling in your lower limb, I wonder if you could scold
yourself?" Yes I know, I was a great help, but what else could I say?
A few months went past before the lady returned to the club and oh boy did
she look WELL! I was first up to congratulate her, "Well the operation went
well then, you look younger than me!" She then said, "Gill thanks to you I
decided NOT to have the operation!" At that point I wanted the floor to open
up and swallow me! Seems she thought this operation was also drastic, so
decided to POSTPONE it. She then went on 'Green Muscle' extract, in pill
form, attended physio and took up swimming. This lady was at out last Dinner
and Dance and take it from me, she has NO signs of arthritis whatsoever. In
fact she too has given up going to Mass, as she prefers to take off every
night to the Beach, where she speaks to Yer Man!
As Mom said, "Whatever she was on, you should go on it, because she is
better than you!"
I do not know how the system operates in America. However perhaps they want
to EXHAUST all other possible avenues before putting you under the knife so
to speak. We all think that going under the knife is easy, however it does
have side effects, just like the drugs.
I hope you keep a positive attitude, it cannot be easy, but eventually you
will get what you want.
Love and God Bless
Gillian

I didn't say "psychiatrist," I said physiatrist.
I do see an emotional therapist and she is wonderful
--is helping me a lot. The physiatrist is something
else -- I am not sure *what* a physiatrist is, but
it is something like a physical therapist with
an MD. And they are worthless, from what I can tell.
Robert

I decided I had no choice but to cooperate and hope for the best-- at least
for now.
I refuse to be injected with any steroids since they only mask the condition
for a while, and with a 2% success rate on the epidural steroid injection, I
feel I have the right to pass on that one anyway.
I have scheduled physical therapy three times a week for two weeks, an EMG-
which last time I had one was torturous, and my rheumatologist will do some
lidocaine trigger point injections against his better judgement and mine. I
rescheduled the surgery for 4/21- a week after all this stuff is over.
Hopefully that will give me enough time to make plans for the children should
they actually approve this surgery I so desperately need.
A dear friend is driving me to physical therapy today, and tomorrow I can
take a cab to the EMG, and get it the heck over with!! Last time the
electrified needle that they placed in my calf hurt so much, that I
reflexively kicked the neurologist performing the torture!!
All your support is the only thing keeping my spirits up right now. Thanks
again everyone.
As for litigating or screaming at the insurance company= my husbands company-
like many corporations of their size is self insured and merely hires someone
to administer their plan. Unfortunately the last two years it has been
someone called "Health International". My only recourse to this company is
to recommend strongly to my husbands company that Health International is a
horrid horrid company!
Michelle

Michelle I totally agree with Robert...go after them...scream if you
have to..don't take it..I bet if one of those Drs had PA...he would
think differently. Make some noise. Is it possible to have your other
doctor call that new place and give them hell.........
Jayne

Hi Robert,
looked like footballs, my toes looked like Vienna
sausages.
I could not close my right hand, I could not stand up
straight. But from my general physicians view I had
emotional problems. Why? Because he could not come
up with a physical explanation<
Sorry to hear that your visit to the Psychiatrist was not helpful. Sometimes
physical symptoms can be induced by emotional problems, that is probably why
you were sent, just to rule out this possibility.
My experience, I saw a Psychiatrist TWICE during my marriage breakdown. I
found both sessions enlightening, although much of what she said went over
my head. I had to ask her to put it in simple English. She told me that the
problem was not with me but my husband, however he was NOT her patient, so
she could not help me. I then asked her if I was SANE? Whereupon she said
"You are as sane as the next person" Having that diagnosis means I feel free
to do deranged things, because I have been diagnosed sane. Thanks to her
attitude, I was spurred on to take a few University Courses myself, which I
feel have really helped me with all the problems life has thrown at me.
Other members of my family suffer from depression in various degrees, one
was hospitalised from it. Thankfully the Psychiatrists have again benefited
their health and I am hoping this will last. Sorry you felt
I saw had his goon beat me up for two weeks until I had enough and
left his "care."<
Love and God Bless
Gillian

Hi Lee Ann
panics I think of a person who sees blood and goes screaming from
the room! That is not what I am like at all. I stay pretty calm
and cool with most things<
Well for me it is not 'the event' but the after thought!
Driving my car and someone comes careering towards me, I swerve to avoid a
collision. The adrenaline has been released, the heart is racing and I
breathe a deep sigh of relief. 'Phew that was close'. What then happens, I
find myself analysing those six seconds of madness. If I had not reacted
because of my PA? If I had swerved in the opposite direction? If the brakes
on my car pulled to the right? Honest I can work myself up in to a right
frenzy! Now I just say, "Phew that was close, their by the grace of God" and
forget about it!
Love and God Bless
Gillian

I can't believe it still, but...
My insurance company hired a company called Health International to
administer all in patient procedures and although they had my rheumatologist,
my neurologist and my neurosurgeons opinions on record for my surgery that
was to be this week they have denied me coverage. They insisted that I see a
physical medicine doctor of their choosing--which I did. Of course, he wants
to do acupuncture, trigger point injections, physical therapy and get me an
epidural steroid injection while he is at it. I had already been advised by
my other extremely well credentialed doctors that the epidural steroid had a
2 percent success rate and would not help, and that my leg pain is strictly
due to the nerve being pinched from the stenosis of the spine and disc bulge
from my fall in November -- yet they insist that I must cooperate. I
grudgingly agreed to two weeks of regular physical therapy supervised by my
own rheumatologist and neurologist and rescheduled my surgery for the 21 of
April.
I cannot even drive and have no idea how I am going to get there aside from
expensive cabs out here in the suburbs...The way I see it they have just
sentenced me to three more weeks of hell and then who the heck knows if they
will see it my way even after I do what they ask. I need a good scream!!!!!
Michelle

I am sure I have asked this before but I do not remember the
response. Do any of you have panic disorder? I have had a heart
monitor on now for a month. I have had what I thought was my
heart acting up during this month. I record the event on the
little recorder I have to wear. I have been sending them in to
the doctors office. So far they have found nothing. I have been
suffering with rapid heart rates, weakness, chills, dizziness,
shortness of breath, no chest pain but a feeling of uneasiness in
my chest.
I guess I am ready to admit this may be a panic disorder. Over
the past 16 years I have dealt with this off and on and I have
always held out on accepting the panic disorder diagnosis. I
just am not one to actually "panic." When I think of someone who
panics I think of a person who sees blood and goes screaming from
the room! That is not what I am like at all. I stay pretty calm
and cool with most things.
I had my first attack when my first daughter was 7 weeks old. I
went to the hospital. Was diagnosed with Mitral valve Prolapse.
I do know that the MVP can cause anxiety problems. I struggles
with the Panic attacks for about 2 years before they put me on
Inderal. The attacks let up and I went to see a counselor for a
while. I finally totally recover about 7 years ago. I did fine
with out the medication for about 4 years. Now it has come back
with a vengeance.
I am sorry this is so long. Has anyone else had anything like
this? Does it have anything to do with PA?
Lee Ann

Hi Tammy
Well I guess some of us have also been down the same route as you, too young
for MTX or not severe enough YET for MTX! As for food to avoid, I really
wish their was a "Top Ten" hit list, but we are all Individuals, so what
upsets me, might benefit you. I went about my problem logically. It all
started with Mom growing Rhubarb, which then translated into Rhubarb Tarts!
One cooked by Mom, which I ate and one cooked by Aunt Pidgie which I REFUSED
to eat! A slice of Moms tart had me crippled the following morning and
thinking about it, well IT had to be the tart. We then visited Pidgie, who
offered me a slice of hers and I said NO. However having insulted my Aunt, I
really had to Prove my logic, so accepted another slice of Moms. Yep the
same symptoms developed, my joints were swollen, I felt like I had been hit
by a Bus and was held together by tape! I then got the all clear to murder
the Rhubarb Plant! Well if Rhubarb could do that, what else was I digesting
and what effect was that having? I purchased a Diary, page-a-day and every
night wrote down what I had eaten, what drugs I had taken, what chores I had
undertaken and last but not least my symptoms. This went on for TWO YEARS
before I made any sense of it, but when I did, Eureka! Then Mom wanted to
prove my theory so sent me to be allergy tested. Just as they were about to
read out my allergies, I gave them my list! They compared the lists and then
said, "So why did you bother coming here, they are the exact same!"
I was also warned about STRESS and INFECTIONS, so the infection one is worth
looking into. Before erupting in psoriasis, did you by any chance have a
sore throat? Cold? Flu?
Hope that helps.
Love and God Bless
Gillian

I am a 35 year old female who was diagnoised w/ PA 3 months aftergiving birth to
my daughter. I was in PERFECT health until then. I have PA in my left thumb
and on my middle right finger. I alsohave it in both of my ankles and in both
of my wrists.My condition has been so bad that about 2 years ago it was
verydifficult to walk for about 2 months. Right now my feet feel muchbetter
but my wrists hurt and it is very hard to lift my 2 and 4 yearold girls. I also
have a hard time opening jars.Does anyone know of any natural remedies or foods
to avoid to help w/PA. My Rehumy who I went to over 2 years ago wanted my to go
onMethotrexate which I refused to due to the side effects and that Ifeel I'm to
young and not in that bad of shape to take such heavydrugs.I take tylonel when I
feel bad or antiflammatory med- which does help.I want to somehow find out what
causes the flareups.I know they say it could be a food that flares it up. I
know stressdoes.Please let me know if anyone out there has a suggestions.Also-
anyone from South Florida?Take care,Tammy

Maria,
You asked if I asked if I get a chance to get out - I have been
really bad about that. I need to get out more but I deal with
GUILT from taking time to do that. I am trying to get over it.
But as any mother knows it is very easy to put our needs last.
The problem with doing that is everyone pays the price when mom
is not able to function.
One of my biggest problems is energy. I have none left by the
time dinner time arrives. I know that this is very common with
PA. My sister loves to run to Chicago to shop. That is her idea
of a fun relaxing time. Not mine! We can get to down town
Chicago in about 1 hour and 45 minutes but it is just too tiring
to me. She obviously does not has PA!!
Margarita,
You would probably be very surprised to know how many women have
far more children than I do. I know personally of 3 ladies and
their husbands who have adopted 20 - 30 children with very severe
disabilities. One of these ladies has a "mild" case of MS. The
children are not all in the home at the same time. Some reach 18
and go on their own, some have round the clock nurses, some have
passed away. It is not an easy life. I can not say that I could
do that. But once my baby is ready for school I may have the
energy to take more children. I do not think I will take more
babies though.
We are looking at buying a large home so there are possibilities.
But that depends on my health.
INSURANCE,
Have any of you had trouble getting health insurance because of
PA? Although this is a long way off for us I am wondering - I am
8 years younger than my husband. I do not hold a job outside of
my home. When my husband retires, if he retires at whatever the
retirement age is, I will still be too young to get Medicare. I
will have to get a job or pick up a private policy. The other
thing I am considering is putting my 3 little ones into school,
rather than home schooling, and getting a job at the school. I
could work at something there and get full insurance. The job
would be easy. I am 37 and running some ideas through my head.
Maybe I should not worry about it but I do.
Lee Ann

take Azulfidine (sp?). What I'm
drug? What have any of your experiences been with it?
I can tell you my experiences so far, but I'm sure others will add to it.
I've been on the sulphasalazine for almost a year now (azulfidine is a brand
name for it). No side effects to talk about (except turning your urine
bright yellow, which I can live with now I've got used to it!). When I
started on it, people on the list said it was generally the "least bad"
DMARD, in that there's less likely to be side effects than with other
DMARDs, although several people on this list have had an allergic reaction.
They start you off on a low dose and then gradually increase - that way
you're less likely to get nauseous. They'll give you regular blood tests,
particularly to start with, mainly to keep an eye on your white blood cell
count.
So it certainly doesn't seem to have caused me any problems (at least not in
the short term), although who knows whether it's actually done me any good
either!
Look here if you want some info:

Hi Louise
couple of you sound like, CB in particular) and am just freaked at the
possibility of taking MTX at this point. So I've agreed to go on the
Azulfidine but that scares me too<
My sister has the exact same problem with her index finger, the joint
nearest the top is swollen and she cannot bend it properly. However glad to
report she does NOT have arthritis in any form whatsoever. My sister also
had a jaw replacement joint operation, but this was due to a Ice Skating
accident many years ago. She is due to have the other jaw joint replaced,
but has chickened out. The index finger has no cartilage left and she
aggravates it when she uses a pen. She recalls knocking this finger while
playing Hockey in school and now at 47 it has come back to haunt her.
SOMETIMES these joint problems are from a previous injury, and obviously do
not require MTX!
The problem though is, what is caused by the PA and what has been caused by
a injury?
You do have a choice, accept what you have now, if you can manage with it,
or go for the MTX/Azulfidine.
My sister was at 'full panic stations' when her mouth refused to open for
her to eat properly. I told her to tell the doctor that I have PA and they
tested her and x-rayed her, eventually they got back to this Ice Skating
accident. Then they had to gain her OLD medical records from the Emergency
Hospital that treated her and so on.............
I have trouble with my BIG toe, but I broke it so many times in my teens, I
know it is not caused by PA!
The choice is really yours.
Love and God Bless
Gillian

I wanted to mention that our local red cross in Ct. can giv eyou info on
"respite" care that is usually state funded. This may be a three hour
afternoon a week where you could go do your hair and manicure, just lay under
a tree and read a book or whatever. I would call your local VNA, they are a
font of info on such community services and I ams ure they can hook up anyone
who is caring for an infirmed child or parent/relative.. You need to take
care of you, or you will be the one ending up in the nursing home!
Hope this helps,
Michelle

To Jayne & Ada,
I am also a stay at home mom of two boys 4 & 7, and approaching the big 40
at the end of this year. Although I don't consider us any "worse" off then
others, we probably face a lot of similar frustrations. My arthritis flared
for the first time when I became pregnant for the first time. And, I've had
a devil of a time after I had two little ones to run after. I took it all
out on my self of course, but now I know better. And, I've found ways to
educate my boys about my difficulties without coming across as the "invalid
mom". I'd love to share concerns and ideas privately if you are interested.
Any other SAH moms--log in and let us know if you're out there and
interested too.
Nancy in Virginia

Hi all, I just had my first appt. with new RD this week and she wants me to
take Azulfidine (sp?). What I'm wondering is what should I know about this
drug? What have any of your experiences been with it?
In brief, I've had P. for 30 years but it's the mildest now it's ever been;
I'm down to just a couple spots (bilaterally of course) on butt, elbows,
knees, and the outside of the ankles. The P does affect my nails, too.
Concerning PA, I've had what, in retrospect, were a couple isolated
instances over the past 20 years but they cleared up and disappeared. I've
had the odd knuckle get red, swollen, and painful over the past 5 years but
the pain and redness went away although I was left with an enlarged knuckle.
Why I didn't think anything about it is beyond me (!). Anyway, last spring
it dawned on me that one whole finger was affected; kind of sore and swollen
and wouldn't close to make a fist. Then a second finger got involved and I
can't close that one either. I also have a toe involved but I thought _that_
was something else; that it was crooked and weird because I'd jammed it
against a door a couple times over the years (!!!!!!).
Went to my first rheumy in Sept. which is when I first got the diagnosis of
PA. He showed me on my X-ray that I apparently have some erosion starting in
my right thumb, and he definitely wanted me to go on MTX right away. Instead
I went to a second doc (before I got to him, the knuckle closest to the
fingernail of one of my fingers decided to get all swollen up and kind of
distorted; now _that_ is not pretty) -- he too was pretty adamant that I go
on MTX -- how he put it was, "if it was my hands, I'd be going on it now;
I'd still like to have the use of my hands when I'm 60." (I'm 50, FWTW.)
Then in Dec. I moved halfway across the country and so needed to see yet
another doctor. (Which is where this post started!)
Anyway, I feel as though my PA just now is very, very mild (much like a
couple of you sound like, CB in particular) and am just freaked at the
possibility of taking MTX at this point. So I've agreed to go on the
Azulfidine but that scares me too.
Thoughts?
thanks,
Louise

Hi Nancy
WANTED TO DO NEXT!! <
Congratulations at finding an excellent Rheumy, any chance he could ever
practise here in Ireland?
Love and God Bless
Gillian

I saw my new reumy on Monday. For those of you new or who don't recognize
me, I am the one who had the DISASTEROUS visit with my reumy in January (I
posted a recap of the infamous conversation). I consequently "fired" him
and decide NO MORE DOCTORS. Of course, that was a rash decision and my FP
referred me to a new guy (and insisted I go). Of course I did, and here's
what happened.
He entered the room and introduced himself and shook my hand. Then he asked
my what I was self-employed at (stated on my history chart). Well, this put
me at ease right away. He saw me as a person with a life!! Turns out he's
very familiar with my business which just made me feel great.
He listened to my whole sorted story, examined me and then ASKED ME WHAT I
WANTED TO DO NEXT!! I said that I wanted to get off Indocin and try
something new. He said, "That's a good decision". He agreed that Indocin
toxicity can cause fatigue, headaches and depression and I should try
something else for awhile. He warned me that Indocin is still the strongest
NSAID on the market, so I may not do as well, but wanted me to give it a
try. We agreed on Vioxx. He agreed that getting off MTX was a good idea and
was glad that I am doing so much better (clear head and less fatigue and
all). If he sees more activity, he wants to try Enbrel. Right now I only
have two inflammed joints and my overall body pain and stiffness is managed
well with NSAIDs and rest.
I felt such relief after leaving his office. I was no longer a ship out to
sea with only one oar. I have so much more confidence in him that my last
guy--it was worth all the hassle! I'm also grateful to my FP for watching
out for me too!
Nancy in Virginia

To Elsa...
I am so sorry to hear about your frustrations. I understand all too well
the extent of your anger. One thing I learned about PA early on is that it
does not only affect your joints. Yes, when you have joint activity you
have redness, swelling and VISIBLE problems. But PA also can cause
"attachment inflammation". That is where you have inflammation at the point
that your tendon attaches to the bone. This can cause pain "all over"
without any visible signs of inflammation. I have had tendon inflammation
in my hands, wrists, elbows, shoulders, hips, and ankles (the achilles
tendon can be a real B*&$h to deal with).
On a "good" day, just my affected joints are tender. On a "bad" day, I ache
all over and that is the tendons. On about 6 occassions in 10 years I have
required cortisone injections to relieve the "tendonitis"--wrists, shoulder,
hip and foot. Usually one injection relieves the accute problem. The best
treatment for that "all over" crappy feeling is SLEEP!!! After 10 years I
know that when I get more sleep I am more functional and when I don't, I am
a mess. Take pain medication if you need to to get a better nights sleep.
My husband and I also invested in a new bed that provides gentle support and
doesn't aggrevate any painful areas. This has been wonderful!
Read all you can about PA and don't be shy in asking your doctor questions.
If he/she can't answer them, get a new doctor. That's what I did.
Please KNOW that you are not alone. Feel free to e-mail me privately if you
would like suggestions on good books and other resources or just want some
more support.
Nancy in Virginia

Courtney wrote
Gill,
What does an Irish lass do if prohibited from going to
Church and Bars? LOL
In approximately two hours I will be donning my 'glad rags' and accompany my
Mom to the monthly "Active Retired Group Dinner and Dance!" It starts at
7.30pm and will finish at midnight plus whatever we decide. We will have a
Traditional Irish Dance Band, so the Polka, Reels and Siege of Ennis are
already on the dance cards. Fitting a lack of socialising into FIVE hours
per month, really does make for great entertainment!
Outside of that, I am kept busy with housework, gardening, painting, walking
Hermes, laundry and of course Onelist.
Love and God Bless
Gillian

...since I stopped going to Church, Bars,...
Gill,
What does an Irish lass do if prohibited from going to
Church and Bars? LOL
Courtney
(With 3 sets of Irish grandparents)
=====
Courtney C McCullough
thelockhorns@...

Hi Jayne
I am not an expert, but MTX is a immune suppressant drug, it suppresses the
immune system. Therefore if you are exposed to BUGS and are on MTX, your
immune system has to be compromised. My GP Insisted that I stopped 'kissing'
my young cousins as he reckons I was picking the infections up from them.
Likewise since I stopped going to Church, Bars, any crowded places, I am
infection free. Well apart from the recent trip to Hospital, where I
contracted a Strep! You may not buy it, but I have proved it. I am not on
MTX, but my immune system is strange. Before I had PA I was a magnet to
colds, but I thought that was because I worked in air conditioned
environments. Word has gone out to the extended family and friends, they DO
NOT VISIT me if they have ANY form of infection. Thankfully they keep to
this rule and Mom agrees 100%.
Love and God Bless
Gillian

Hi Helen
I have to agree with you here 100%.
Due to the lower spine scolosis and pain caused by it, I have pain further
up my spine during the day. However if I adjust my position, either sitting
or standing, I fine relief. Although I have a typist chair here at my PC
with arm rests, I prefer the straight upright dinning room chair with added
lumbar support. I try to swap chairs during the day, in hope that I can cut
down on other parts of my body compensating for the parts that are painful.
Love and God Bless
Gillian

Hello John
And welcome to Onelist. I have just received my e-mail and yours was a
breath of fresh air.
Old injuries? Well I broke my left ankle while in Ireland on holiday, after
surviving several European Skiing Holidays. However that ankle has never
given me a problem, makes me wonder if I should break all my other joints?
I also use Dove, but the deodorant, which I find really good. It keeps the
psoriasis at bay, unlike other deodorants, which seem to aggravate it.
However I have not tried the soap, as I usually use a herbal soap.
As for disability pension? Well like you I was on unemployment, although
they wanted me on disability back in my last flare 1993/94. I refused to go
on it, as 'I' did not think the time was right. I eventually applied two
years ago and had to go for what they call a 'medical assessment'. This
assessment was undertaken by a local physician, not a specialist and he paid
more attention to my liver than my joints? I did take my medical file with
me, which he looked through before deciding I was a "Medical Enigma!" Having
just returned from England with a concrete diagnosis, I was annoyed by his
remark! Anyway I was passed for Disability Pension and I understand that I
have to return for another assessment at some point in the future, however I
have not been called in what two years? Yes swimming is always recommended
and Tai-Chi? Well Mom is learning this with her "Active Retired Group" and I
am following her.
Diet for me is very important, so you might want to try and eliminate foods
that upset the PA. It is a long process but worth it in my opinion.
Knowing exactly what is wrong, allows you to be positive and help yourself.
You are a breath of fresh air, having found out what the problem is and
taking positive steps to help yourself, well done.
Love and God Bless
Gillian

DRAT!Been feeling lousy the past week and a half. Went to the doctor and have to
take a STRONG antibiotic to fight an infection.I asked the Doc if the
"infection" could be related to the Sjogren's Syndrome and she said the
infection appears to be a repeat of what happened to me in September (ER visits,
steroid shots, antibiotics). The back roof of my mouth swells up. I can stand
the glands be swollen in my throat and ears filling up with fluid but when the
back roof of the mouth swells I fear my breathing will be cut off and I am
miserable. Pacing the floor while wanting to lay down and get some sleep. This
time I have more swelling and the face is mushy feeling swollen. I've had a
severe dry mouth problem during this same time frame. Maybe I should have pushed
for a steroid shot? Might have lessened the swelling? I DID NOT inject Enbrel. I
even told doc about the Enbrel/infections warnings but she didn't pay much
attention to it. Maybe figures I know enough to be responsible and act
accordingly. hee heeSince they tested for Strep and Mono and said negative for
both I don't need to quarantine myself. I wish I knew if this was a "flare" of
the SS so I would know of symptoms to watch out for in the future. I had to up
the pain meds which helps. Last time I had to take longer than normal for the
stuff to clear up. I hope this med is really stronger like the doc said and it
does the trick for the first ten day regime. The antibiotic is Tequin @400mg.
Anyone familar with it?I am crabby and out of sorts. Quick to take notice of
dumb things going on around me and gripe. Not as tolerant of others. Maybe I
should write some more gripes to DaVent before I get people angry at me.-----The
double and triple emails received might be because of the software at onelist.
When a moderator goes to onelist and edits an email she/he hits the "approve and
send" button. I think the send and approve button is sending the original and
the new edited message out to the list. Will have to check on

A few technical questions: 1) What is LOL, please? I see this often in posts. 2) I often get within one of the daily postings a message and an answer to that message. How did the answerer do that? 3) On several occasions I have duplicate &/or triplicate messages within one daily posting? Is this my IP, windows, outlook express, or something with the onelist? Thanks to anyone who can help me be a little more "e" literate.

Janie Howington
jhowing@...
janiehowington@...

Hello everyone,
I will be having spinal surgery on March 31st at Columbia Presbyterian
medical center Neurological Institute in NYC. Dr. McMurtry "the boss" of the
place is doing a laminectomy for me.
It turns out that two things were going on- 1. the PA ate away completely the
lamina (bone part of spine) at one lumbar level. In its place is a lot of
arthritic tissue, which is rapidly filling up space that should be open for
nerves to pass through. 2. When I fell in November, the disc slightly
herniated, which put the icing on the cake.
I also have another level that has had the disc collapse completely and scar
over with arthritis, and some PA going to work in my neck- but still years
away from needing surgery there. That is good news.
It is amazing to me that I will be home by Sunday, and able to drive within a
week. One restriction only is no lifting more than ten pounds for a few
months.
I also discussed with my rheumatologist what we might do next if the Arava
and Imuran combo stops working, and we both agreed it would be wise to try
Remicade. He also gave me a mini seminar on the difference between Remicade
and Enbrel, which I will share with you all next week.
My best to all of you, and you can believe I am now even more in favor of
those DMARDS,
Michelle

Hey Ada...No I have never been told the reason for my frequent
sinus/cold problems are related to pa. Although I hear alot of people
on here complain about the same problem. My doc told me it is from
having a child in school..and that he brings it home. I don't buy
it...Even before I had children...I had problems with colds easily
turning into bronchitis....I also have sinus pressure/headaches daily.
Heres one for everybody - I had to cancel my rd app't today because I am
SICK....isn't that funny?
Jayne

Hey - I thought it was just me! Been having this problem for about 3 years
and some of that time I wasn't working at all so I knew it wasn't work
related. Thanks. One checkup at my rheumy said it was normal to have
flares in different parts of the spine and this was a particularly tough
time for my upper back/shoulder blade area. So that I suppose was her way
of answering my question.
Since I have such shoulder pain anyway, I assumed it was part of my body's
method of compensation. I've found that a lot of my joint/muscle pain is
just that - compensation for body parts that don't work properly under high
degrees of stress and flare. Just MHO!
Thanks.
Helen

Hi Elsa
Welcome to Onelist.
Yes it can be extremely annoying and frustrating. You know you are ill, but
the medics well, 'it must be in her mind, as the tests are all negative'.
Reckon we have all been their. As for wishing for a flare, yes I went
through that stage too and when it did arrive, 'be careful what you wish
for', I swore I was never going back! I still believe we have a process to
go through. Initially you know their is something wrong, but your tests are
normal. It could be a few years before the medics eventually say, 'Guess
what, you are ill'. Once you receive that diagnosis, well half of you is
Happy, 'See I told you I was ill', while the other half goes into sheer
panic, 'God I am really seriously ill!'
The professionals then bandy around words, 'flare and remission'. We all
know what a flare is and we look forward to this remission. "Get my life
back then, excellent". Well in my experience remission means this quote 'low
grade crappie feeling', which is not as bad as the flare, but not as good as
what you were before PA! Once you are in remission, in my experience you are
really ON your own! The medics are they to help when you are in the serious
flare, but once in remission, their job is over. I think I am in what I can
only explain as 'jet-lag'. The mind is on Irish Time, but the body is on
American Time and never the twain shall meet!
No you are not the only one out their, which is one good reason to belong to
Onelist. However STRESS over this condition can aggravate it, so try and be
strong. You are the person who knows what you are going through, while the
medics unfortunately are healthy people! Trying to explain to any healthy
person what you feel, is a uphill battle!
Love and God Bless
Gillian

Hello everyone, this is
John from Queensland, Australia
I haven't written anything for a while, but I always read your letters. I just
thought I'd let you know how my PA is, I've had PA for 5 years now, and after
many blood tests, X rays etc, I was starting to believe the Dr's that there was
nothing wrong with me, just old injuries playing up. I'd read that there
were many different types of Arthritis, and realising that I must have some
form of Arthritis (swollen joints and pain), I started searching through the
local Library and the internet for references to Arthritis and came across PA
and your group, and Bingo! The symptoms were exactly the same as mine. So first
i needed a
referral from my Dr to a Rheumatologist to confirm it, so I suggested to my Dr
that I had Pa, he
referred me to the Rheumatologist, I had to wait two months, to see her (I
don't have private health insurance). The Rheumatologist confirmed that I had
Psoriatic Arthritis (the Spondylitis version) and said I should go on
Methotrexate, and folic Acid, I'm already on Celebrex, 200mg which I find
really helps,
I also take some tablets which contain Glucosamine Sulphate, Celery seed, Grape
seed, Ginger and Fish oil (with Omega 3 fatty acid) and use a soap for my skin,
with the brand name Dove which is available here in Australia, which contains a
moisturising oil, which i use on my hair as well, and sometimes coal tar soap.
The soap seems to keep the skin condition under control, and saves a fortune in
shampoo and conditioner.
While at the Dr's i enquired about getting on a disability pension as I'm on
unemployment benefits right now, and have to keep applying for jobs that I
can't do, to keep receiving the benefit, and he's given me a medical certificate
stating that I'm unable to work, which I now have to hand in with my dole form
next Friday, apparently I now go on sickness benefit, and then after 3 months am
assessed by the social security Dr to see if I'm eligible for a disability
pension.
After my first visit to the Rheumatologist She referred me to a Physiotherapist,
who showed me some exercises I should do to help develop some of the muscles
around the joints, and advised me to go swimming and possibly Tai-chi, which she
highly recommended, exercises that won't put any weight on the joints. So
tomorrow I'm
off to the swimming pool and the local Bhuddist temple to see about the Tai-chi
which I hear is free there and run by a retired Chinese Kung-fu master.
Today I saw the Rheumatologist who has put me on Methotrexate 10mg once a week
and Folic Acid every day, and a blood test every month for three months see how
it goes.
Now I know exactly what's wrong with me i can try and do something about it. I
suppose diet is something I should look at as well.
I hope i haven't raved on too long
bye for now
John

Hi my name is Elsa. I'm 30 years old and was first daignosed with PA in
1993. I have been through the gamet of meds, steroids, immunosuppressors,
NSAIDS, Embrel etc. I'm only on 2400 mg of Ibuprophen and 2 Darvocet a day.
I know... the darvocet doesn't solve anything but it's the only thing that
stops the aches and pains enough for me to get anything done. Everything
else either makes me fat or sick. ( I'm sure a few of you can relate) I went
to a new Rhumey today, here in San Diego, CA. He put me back on
sulfasalazine, amatryptiline at night (sleep) and sent me off to have xrays
and blood work. He said since I had only pain and no swelling that it was
fybromyalgia and that my PA was ok because there was so skin rash. Hello! I
never have had any on my skin, just 3 toenails that are quite sexy looking.
haha gross! Anyway, he gave me that look when I said I was in pain and took
pain meds. Ya know it drives me nuts but I want some quality of life here,
ya know. I keep beating myself up because I wonder if this is all in my
head. Crazy? But since I had my first flare which attacked everything and
laid me out for about nine months, I've just never been the same. It took 2
years to diagnose, most people thought I was a hypochondriac. Once it really
set in though it was obvious I wasn't making it up. On and off over the
years it flared but there is always a few joints that are pissed off. I'm
back to night sweats, stiffness and pain in my neck, ribs sternum, sacrum
and right hip, but no real swelling or redness. So then, the doctor says I
have a pain disorder, which made me feel even crazier. But he did the 21/2
hours worth of x-rays and the blood work. My blood work rarely if ever
shows anything, more proof I'm nuts! No, I just wish I didn't worry
everytime I felt pain or fatigued that I've done something wrong or if its
all in my head.
Its so self absorbing and annoying. People always ask are you under stress?
haven't you been taking care of yourself? or tell me I need to slow down.
Slow down, how much slower? When I first got sick I was working as a
firefighter/ EMT and now I find it hard to manage sitting in class all day.
Walking across campus to my car is an ordeal, somedays. I feel like a whiner
here but my level of frustration is high. I asked the doctor and nurse if I
was crazy and they said no, but I wanted more, I don't know what but, its
almost like I wish I would have a huge flair rather than just this low grade
krapy feeling. Maybe some of you can relate. Its like they can do something
with the big stuff, but the moderate stuff is what drives me nuts. We'll
have to wait and see about the test, April 27, to be exact for the next apt.
If anyone knows anything about fybro- whatever let me know. I've been
surfing aroun annonymously and its good to know that I'm not the only one
out there. Thanks for reading my diatribe. Peace,
Elsa

New J;
That's great news! You said MSM at large doses, exactly
how much? Also what is the ratio between the MSM and
glucosimine sulphate? About a year and a half ago I had a
stubborn lesion on my shoulder and it dissapeared. I
couldn't figure out what I was doing differently at that
time, and I now remember I was taking MSM and glucosimine.
I'll start doing that again, see what happens. In the
meantime I'm curious as to how much you take.
Thanks,
Guy

Hi all --
Molly and I are back, and London will never be the
same. OK, thats a lie -- London does not even notice
we are gone. The population of the city is about 95%
American, as far as we could tell, so one couple from
New Jersey more or less is not going to make a big
difference.
Anyway I see a lot has happened in my absence, and I
want to answer some mail from the archives as I get
the chance -- for now, back to work!
Missed you all!
Robert, NJ Highlands
raharris@...

Hi to all-
I would like to thank eveyone who has emailed me regarding my PA and
Enbrel. It has been a challenge to self inject, but so far I have
survived three needles! I definitely need my husband there for
encouragement, and it helps that he is in the medical field. The
support from people on this site has been magnificent, and has helped
me get through this tough period. So far, I felt improvement after
the first injection, but my hands are back to being swollen again
after the last rain and snow storm. I am still holding out great
hope for this med. so I can stay away from the dreaded MTX (it made
me ill on a weekly basis). I read on line about the aspirin for the
scalp itch. Can I get more infor. on that (or lemon juice?) because
my scalp P is pretty involved and itchy. Nothing seems to clear it.
Also, have developed 5-6 small patches on legs about 6 mos. ago and
nothing is working that Dr. Derm. gave to me (latest is a cream
called Psorcon). They say the Enbrel might help, but at this point,
am not too optimistic.
Again thanks to all of you. And again, I want to reiterate that this
site has given me the support that has been lacking in my life for
the past 8 years. Thnx and have a great day!!
Robin

Hi Robin
Welcome to Onelist.
Well many of us have Psoriasis of the scalp, although thankfully I just
break out in the odd eruption now and again. Before this group I was like
you, alone, trying to figure out what to do, where to go and screaming HELP!
One day I decided to try a little 'lemon juice' in the rinsing water, after
washing my hair and much to my surprise it cleared the psoriasis. However it
did not clear it from my ears, but the scalp cleared. Their are many
products on the market, both orthodox and unorthodox for psoriasis, many of
which I have tried. I have adopted an open mind with this condition, read as
much as I could lay my hands on, pestered and driven various medics
deranged, but in my opinion it was all well worth it. I believe we all have
a choice in life and I have chosen to try the unorthodox methods to control
my condition, so far so good. That is not to say that I have turned my back
on the orthodox treatments, but for me their is a time and place when these
treatments should be engaged in. I am hoping I never reach that time and
place, but if I do, then so be it. At the moment though, I am doing pretty
well.
Love and God Bless
Gillian

After having a large portion of my body covered in psoriasis , I thought I
would never be able to get arid of these damn scabs or whatever...But 4
months of methotrexate did the trick....I feel much better looking at my
skin and not seeing that stuff anymore... For 2 months I was on a 7.5mg
dose, and the last 2 months I was on a 15mg dose a week....The 15mg dose
seemed to do the trick....Now I just am focusing on the arthritis part...The
arthritis is better and I actually stopped taking Sulindac (NSAID) in which
I relied on taking every single day for the last 8 months....I'm glad I
could finally stop one of these meds because I know sulindac and NSAIDS
increase the amount of MTX in the body, which is dangerous...so , instead of
the sulindac i've been taking MSM at high doses and that works really well!!
its actually a MSM/glucosamine combo...... But still, I know if I stop MTX
that this crap will get worse again.......so, I dont know....

I just wanted to say a big thank -U- to all that wrote back on the subject of Enbrel. One very big problem, I don't have Prescription Insurance! so the Enbrel does not look to realistic at this time. I work for one of the largest company's that don't carry Prescription Insurance in this area... Bummer!, maybe some day? well thanks again!

Lord bless, Patrick O'Grady ( in honor of my Irish heritage! )

Donna -
I tried a bunch of different diets, and had a bunch of expensive testing done
to determine what food allergies I had. I finally found a diet that works,
for me. I eat whatever I want whenever I want it. Ice cream seems to help,
Moose Tracks is the best. I supplement my diet with NSAIDS, Neoral (soon to
change to Enbrel), folic acid, and everybody's favorite - Methotrexate. This
is the "diet" that works for me ;-)
Rob Glover
<< HI MY NAME IS DONNA,
I WAS HOPING SOMEONE OUT THERE HAS AN ANWSER FOR ME .
I HAVE PA, 6 YRS I TRYED EVERTHING FROM COD LIVER OIL TO TUMS.
ANY ADVISE PEOPLE GIVE ME I TRY.I EVEN TRYED SWITCHING MY DIET AROUND.I CANT
SEEM TO FIGURE OUT WHAT IS THE BEST ONE.I TRIED THE ATKINS DIET AND FLARED UP
SO BAD.(I THINK IT WAS THE CHEESE).DOES ANYONE KNOW IF THERE IS A DIET THAT
HELPS SO WE DONT FLARE UP?
THANK YOU . DONNA

Hi All
May I take this opportunity to wish you all a Happy St.Patricks Day and do
not forget to wet the Shamrock.
Love and God Bless
Gillian

Hi Pat and everyone;
After giving your question about "questions ask if you have trouble
getting dressed and cared for and need help for work etc..--- I would
consider that the meds are help, so, personally, I would say "yes" to the
question.
Nancy in Wisconsin

I heard from a few people that alot of people tha have severe P or PA
actually have lyme disease and dont know it...My mom had it really
bad...undiagnosed for 17 years...messed up her mind big time... and their
saying that I could of possibly been born while my mom had lyme...Lyme is
very complicated...with those little spirochet worms that hide in the body
and are very hard to get arid of... I never heard of anybody being cured of
lyme...It always seems to come back in one way or another....Also, another
person said that spirochets are also involved with people who have
syphillis...and they also get mental problems , just like with lyme
disease...not just physical pain.....I have psoriatic arthritis, age 25 and
I dont know anybody in my family history that has psoriasis or
arthritis....I dont know.....anybody else here also have lyme?

Here is the link, that I hope gets you there to the new list I started for
those of us who want to discuss getting to gether soon!
Michelle
<A HREF="http://www.onelist.com/group/PATravelers"

Hi Angela
mechanics and me compensating for the damage. he wants me to see a
physiatrist(? spelling?). This is a doctor who works with rehabilitation<
This is like Physiotherapy, although used more and more for Athletes! Yes
one of the major problems with arthritis is compensating! The right knee is
sore, so you use the left knee more, which puts that under strain and now
you have two sore knees. My right leg or STANCE is one inch sorter than my
left leg or STANCE! However I do NOT compensate. I do not use a stick to
walk, I do not build my shoes up, I do not do anything except try and keep
as Vertical, in the correct stance position as I can! I know many people
here who have had insoles measured and uplifted to CORRECT their walking
posture and they have worked.
Let my put it this way. Have you a real old pair of shoes, where you have
worn the heels down and soles through. [I am getting close with my dog
walking boots] These shoes that are worn out, are the most comfortable pair
of shoes to wear, BECAUSE they have worn to YOUR specific mechanics.
Now go out and BUY a new pair of shoes! I did just that, treated myself to
"HI-TEC", which are supposed to be one of the best brands. I am currently
walking like a DUCK, as my new shoes have things called even heels, which my
old boots no longer have, because I have worn them down. I now feel as if I
have TWO large rocks, under the outer side of my feet and it is so STRANGE
to walk, as these rocks throw my toes inwards!
So I reckon yer man will just look at your stance when walking, sitting and
standing and then teach you how to correct the problems. I mentioned
Athletes, because being Olympic Year they have all been filmed to sort out
their running stances, in order to get those few extra seconds!
Love and God Bless
Gillian

Hi Jayne,
After a big flare of my wrist and big toe, my biggest complaint has been hip
and thigh pain, which increases if I walk too far, when I stand up after
sitting, and mostly laying down at night. It wakes me frequently during the
night. After a bone scan which lit up the facet joints at L4-5 and L5S1 and
an MRI confirming spinal stenosis and 2 herniated discs, the rheum had me see
an spinal ortho, who said there were 3 distinct focuses for pain, including
the hip itself. The least invasive approach was injecting the hip itself,
which did lessen one area of pain, at least for a couple months. I am not
eager to try the steroid injections in the back itself, so I am trying to
tough it out. Vioxx definitely helps other areas but not so much for the hip
and thigh.
Wish you relief with this-- I really empathise!
Nancy in Wisconsin

Hi all,

I went to see the rheumy consult yesterday. he asked all kinds of questions and examined all my joints. He didn't find alot of acute inflammation, but did find alot of damage ( like I didn't know that..look at my feet!). Anyway, he feels alot, if not all, of my pain is damage, poor body mechanics and me compensating for the damage. he wants me to see a physiatrist(? spelling?). This is a doctor who works with rehabilitation. Apparently, he works with patients with alot of damage. He feels that this doctor will be able to help me, maybe with feet inserts ( I guess I have NO arches left!), proper ways to move, ect. I am wondering what to expect when I go there? What will he do or give me??

Thanks. I guess I'm a bit releived that it isn't directly the arthritis, but it still doesn't help with pain. he doesn't want to add or change any meds until we try this route. He said we're getting into high toxicity levels with everything I'm taking ( how many can remember what I take??) and he'd rather try this first.

Angela

For my Sacroiliac (low back pain) my Doctor recommended stretching of the hamstring. Is your pain in the back or front of the thigh? Take Care, Becky

Message: 7
Date: Sun, 12 Mar 2000 22:07:21 -0500
From: "sherman.fam@..." <sherman.fam@...
Subject: thigh pain
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

hi jayne, i notice the pain as soon as i lay down, both knees and mostly
the left thigh. my rheum mentioned spondylarthropathy and it's like a heavy
throb and i have truble keeping the legs still as it's so uncomfortable. i
resort to moving my trusty heating pad around which helps. i've had a lot
of discomfort running down my left buttock during the day, down my leg to
the knee. i had scitica when i was expecting my twins and that burned as i
recall, this is more of a deep ache though in a line almost , that i could
trace...the indomethicin does not seem to help it unless it would be rven
worse if i did not take it...mo

Hi I am new to this group and hope to be welcomed here. I have had
psoarisis for over 30 years and think I have arthritis too but have
not been to a Dr. for it yet. (I know I should go).
I was posting in the alt.support-skin-deaseases.psoriasis group and
have just got tired of the way the group acts. I will not go into
that any just wanted to say Hi and hope I can stay here and get and
give some support.
I am 49, Male, live in South West Michigan.
Tim

Hi Courtney
You have seen the mound of earth in the garden then. Here we call it a
'Rockery!'
Mom is fine, older than me and perfectly able to do her own thing. This is
usually watching the washing machine going around: she thinks I got
satellite television in and producing something from the other television,
aka the cooker.
Mom is what I would call a 'plodder' which is fine, as with PA I am also a
'plodder'. Thankfully I take after my Father, have his personality,
therefore we hit it off well. Mind you, one day I would like to view the
washing machine, while allowing Mom to use the electric drill, now that
would be a scream!
Love and God Bless
Gillian

Hold on, Have I missed something? what exactly have
you done with Mother Gill? Should we alert the Irish
authorities to check you garden for freshly turned
earth?
Courtney
--- Gillian Rowe <roweg@...
only have ME to think about. Other members have
elderly parents in need of care,... I am also
'Blessed',... because I only have ME to think about.
=====
Courtney C McCullough
thelockhorns@...

I did a search for MSM and among the helpful info at
Onelist was a group of people who write and share
stories bases on the concept of Muldar and Scully from
The X Files being romantically involved. MSM = Muldar
Scully Married.LOL
Courtney
No more OTs from me for a while.

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

Awwww, I've been found out! I wanted to lurk for a while before yakking.
But, I got my "welcome to the list" today.
I'm Kirsten (pronounce like "ear"). 34 years old and married 3 years this
May to Paul. We have 2 boys. Justin will be 12 years old in June (he's
from my first marriage, Paul adopted him 2 years ago) and Mitchell is 18
months old. We live in Salt Lake City, Utah. Paul teaches computer classes
all over the valley (5 different part-time jobs) and no health insurance. I
work part-time at home for a small real estate company making flyers and
typing letters, etc. My mother lives a couple of miles away in a nursing
home. She has Parkinson's Disease and is wheelchair bound.
While I was halfway through my pregnancy with Mitchell my thumb joints began
to be very painful and inflamed. They're disfigured now as well as the
index finger on my right hand. The finger can only bend halfway and doesn't
straighten out all the way. I've got all the other "pains", etc. I was
"officially" diagnosed last summer with fibromyalgia. I've been taking 20
mg of piroxicam (generic Feldene) for about a year. I also take 100 mg of
Zoloft for depression and OrthoCept (birth control pills) to help control
acne. I've just recently started on Zantac 300 mg to protect my stomach
from the piroxicam. I use Triamcinolone .5% on my plaques. I also slather
myself with extra virgin olive oil after I shower. That has helped very
much. I just started using Mary Kay Extra Emollient Night Cream on my
plaques at night. Most of the next day, my skin was soft as a baby's
bottom. hahahaha I was very surprised and happy that it worked.
I am online a LOT and ran across a paragraph that says fibromyalgia does NOT
disfigure the joints. That got me thinking that I don't have fibro. I've
always felt I had a form or arthritis so I did some investigating. Turns
out I have PA. I took 30 pages of information I got from the internet to my
doctor. I told him I think I have PA instead of fibro. He said he needed
to look up PA and then I handed him my stack of papers. He smiled and
thanked me for doing his job for him. :) He agrees with my diagnosis and
I have an appointment to see a rheumatologist the end of April to confirm
that I have PA.
Most of my days are spent on the couch trying to keep Mitchell from
destroying our home. He's a VERY energetic boy! I've been using my cane a
lot more lately. I just got permanent handicapped parking licence plates
for the car yesterday. That really helps a LOT! I also bought a splint for
my right wrist since it hurts so much. I only wear it when I'm in a lot of
pain and sometimes wear it when I'm asleep.
Sorry this is so long.
My sister-in-law just lent me a Nikken magnetic mattress pad and magnetic
cervical pillow for sleeping. They claim I should see results in 2 months.
We'll see. I'm skeptical, but it's free so I'll try it.
Well, that's me. I'm sooooo glad I found this list. I really feel alone
with this PA junk. I hope to get some great ideas from everyone here on how
to cope with this icky stuff and make some new friends.
Thanks for welcoming me,
Kirsten

Has anyone had problems with swelling while using Vioxx? I started taking Vioxx about two weeks ago, my legs and feet have been really swollen, I've had swelling before, but it hasn't been a problem in quite awhile. I also started back on the MTX at the same time. My Primary doc quit and left town , so now I'm without a Doctor. I will go to Salt Lake and see my Rhuematoligist in 2 weeks, I guess time will tell Thanks, Becky

Dear Jocelyn,
I have the same problem with my hands and feet.
My dermatologist is very supportive, yours sounds like some are useless! I
would suggest finding a supportive one who is up on the latest treatments-
perhaps at a teaching hospital- how about McGill for Canadians?
My own tips for my hands and yours are: buy several pair of white cotton
gloves "beauty gloves" and wear them around the house and even to bed to
protect your hands . As soon as I see a crack/fissure, I fill it up with the
prescription antibacterial and also cover with the steroid and a large
bandaid for 24 hours straight. Sometimes this happens all over and I need an
oral antibiotic in addition- I just call my dermatologist and he will call it
in, if he has seen me in the last few months.
I have had my right and left hand so bad, and non-responsive to creams that I
have had to have multiple injections into the palms, fingernails,
fingertips,etc.. with Kenalog a steroid. Lately we have found, that if the
nurse sprays a freezing spray at the same time he injects ,it hurts half as
bad. Otherwise, I could not help but scream. I have also brought a close
friend who distracts me with prayer and meditation and her hands massaging my
neck and that has helped me through.
Arava has really helped too, but lately, less so. I have had it for 13
months now, but probably will be giving it up in the next month or
so..although I do not know what would be next...
Depression is also a nasty, secondary problem to chronic illnesses, and I
have had clinical depression for over ten years now.
I have tried Prozac, Zoloft, Effexor.
Also Buspar for anxiety for the first few years. I can tell you that in
recent years, the docs have been able to give higher doses of Prozac and
Zoloft than was initially allowed, due to the time factor of experience with
the meds
now that they are not new anymore.
Sometimes it has been a challenge to get the right dose or combination of
meds, but eventually we have gotten there. I am also excellent at knowing
when I am slipping into the "pit" as I call it. One of my hallmark signs is
isolating and not wanting to shower or dress or even get up! Not answer the
telephone- nada. That is when I call SOS to my doctor who is very helpful. I
did have therapy once a week to twice a month for five years, but "graduated"
five years ago, and now only go when I need medication adjustments . There
is a lot of hope and help out there for depression- better than ever before,
I would strongly urge you to try a psychiatrist if your general practicioner
cannot help you as you need- it helped me get my quality of life back! It is
so nice to wake up feeling happy, instead of irritable and not even for a
reason- just the rotten depression!
Good Luck to all and God Bless,
Michelle

Regarding relexology. I had it three times and this wonderful
woman who did it, has moved out of my area. I was heartsick! It
is not something that will "cure" your PA or help in any long
term manner...but it is THE most relaxing thing you can do for
yourself. I used to fall sound asleep when she worked on my
feet! I think we could all benefit from some relaxation and this
is a great way to go about it. Especially for those of us with
the PA affecting our feet. Have a wonderful time.....wish I
could be there too!
Linda
Poulsbo, WA.

Hi Petra
I tried to reply off list, but my PC is throwing up my password box?
Yes I have tried Reflexology, a trained person rubbed my feet! That is the
limit of my knowledge on this subject. I was their for about one hour and
afterwards I felt like I was walking on the clouds in the sky. However this
new found experience only lasted two days, which was a shame as it was very
comfortable walking on clouds. I did keep it up for a few weeks, until the
Reflexologist left town for pastures higher.
Love and God Bless
Gillian

Hi, I'd like to introduce myself. I'm from the UK, male, nearly 37,
and just about to be diagnosed as having PA. The Doc didn't tell me
much about it, just ran x-rays and blood tests, and sent me on my way
to wait for my next appointment. That's why I'm here - to find out
more about PA and what I can expect in the future, and to share
experiences with others who know the score.
I've suffered from relatively mild psoriasis for maybe ten years, and
it's only over the last year that 5 of my toes have become swollen,
angry and painful. I initially put this down to an old motorcycle
crash which mashed mt right foot pretty bad, but it seems it is PA.
It's gone from one toe to five toes in roughly six months, and it's
getting worse, so what can I expect to have next? Any comments or
advice from similar sufferers would be gratefully appreciated.
Nick South

Hi J Saba911@...
Initially may I commend you on your succinct e-mail that I have just printed
and digested with my breakfast. For me you are a breath of 'fresh-air', as I
was starting to think I was insane,'toughing it out without drugs'. Not only
did I have a second opinion, I was lucky enough to go for a third. I managed
to track down a Rheumatologist, who has the only known European Clinic on
PA! I was also lucky insofar as he agreed to see me, providing my Physician
here wrote him the usual letter of reference. It was HE who sat down with
myself and Mom, for over one hour, after giving me a physical examination,
to DISCUSS MY health. He explained that the drug route for me, due to other
medical problems was NOT an option and gave me his opinion, if you like.
That was the "Evening Primrose Oil", change of lifestyle, [which included
what I ate], avoid infections and avoid stress. Now I have to be honest, I
felt that he was just saying this to be 'shot' of me. The following day I
took up the offer to play Hockey with my sister and her children, against my
Moms wish. Boy did I enjoy myself and I came back without damage. Like you I
also walk, as for me this is my best exercise. I find that once I am in the
Town park, playing 'fetch' with Hermes, my aches and pains subside. I am not
saying this is easy, my initial attempts to throw anything caused sharp
pain, but after a few weeks the body adjusted. I can now throw in a straight
line.
As to if I was bullied by my Rheumy here? Well we played 'cat and mouse'
over the MTX? He has always wanted me on it, for years that was the first
and last sentence in our consultation. It was I who was saying 'thanks, but
no thanks'. Then he wore me down, so at the next clinic I informed him I was
ready for the MTX! Much to my surprised he had changed his tune, decided
that I did not need it! So I would not say bullied, but gently persuaded.
Once I realised the game was 'cat and mouse' I stopped playing it. I have
not seen my Rheumy here now since December 1996. My Physician is capable of
seeing to my needs, my blood/urine tests and x-rays.
Again thank you for your enlightening post, it is good to know that I am not
insane!
Love and God Bless
Gillian
Moderator note: Can I vote on your sanity Gill? Or could we do a survey? Pat B

Hi All! There were really some thought provoking posts on the last
digest and I'm motivated to add my 2 cents!
Amy--I, too have tried the mouthwash when I had mouth sores. My
doc and pharmacist called it "Magic mouthwash" Sounded silly to
me but it worked.
RE: infection and flares--it has been my experience that any type
of illness, stress, surgery, etc. can set off a big or little flare for me.
I've read that many times here from others as well. Sometimes I
don't go into a flare after one of these events and I am relieved.
Other times I flare w/o any good explanation and that is when it
REALLY bothers me. Somehow if I can blame some event or
activity I feel better about it. I feel so out of control when things
rapidly change for the worse and there is no answer to WHY?
Someone asked about taking MTX and still needing something
else. It is common practice to mix MTX with other DMARDs. I
have been on plaquinil w/ MTX for 2 years. Plaquinil is about the
only drug I don't have some side effect from! Arava and Enbrel are
also often given with MTX. COncerning ARAVA--my rheumy says
that in his experience so far, a significant number of his patients
have diarrhea with Arava. The manufacturer's labelling indicates it
is an infrequent side effect but in at least one busy practice it is
more frequent.
Memory--I find that my memory and concentration are completely
shot when I am fatigued. It can be so bad I can't concentrate
enough to write checks and pay bills. I have learned that I need 10
hours sleep to function and that is a need when I am not even
working outside the home. If I can't sleep 10 hours at night, I
MUST plan for napping to make it through the day with any
productivity. This comes from someone who always lived before on
6 hours a night. "Lifestyle changes" doesn't begin to express what I
have learned and changed in the last 4 years. I have been labelled
"severe" and many days I feel that way! Overall though, I am
moving pretty well, controlling the pain, and I look "fine" LOL. This
is accomplished by taking care of myself, educating myself, taking
many medications that I have chosen, and having some wonderful
support people in my life.
Blessings to all--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 have had PA for about 7 years, have been on all sorts of meds during that time and can honestly say that I have never had a problem with memory. In fact, I think I can say the opposite! I find my thought processes more clear and decisive and I am able to recall minute details that people are sometimes amazed by. Perhaps the reason is because I am constantly exercising my mind by involving myself in intellectually stimulating materials and activities. Some people would think that simply reading a fiction novel would qualify as intellectually stimulating but it really isn't for most people. And no, surfing the net is not mentally stimulating either. Some say that it actually slows down receptors and makes the brain sluggish. I take part-time university courses and personal development courses to always stimulate my mind. The human mind has capabilities far beyond what we are aware but modern science knows that challenging yourself mentally stimulates your brain and
memory. I challenge myself mentally everyday. I avoid using calculators, I ask questions about everything and it really is a tremendous feeling when you meet a mental challenge head on and win! I propose that everyone should do something mentally stimulating each and everyday. It should be something that makes you have to really think - logic puzzles are great, and even crossword puzzles! I would be willing to bet that memory loss would not be such an issue or problem for most people.

Janet

Hi Jocelyne...my psoriasis is also on my palms which makes doing things
very irritating...I have about 20 rx creams...the only thing that helps
is salt water from the ocean (sounds painful...but not) and the sun..I
didn't find this out to I went on vacation for the first time in ten
years to the Bahamas...and what a difference...it is starting to come
back now being home...I keep telling myself summer is around the
corner..and I will stick my hands in the sun...and take a couple of
trips to the beach - aah ! Anyway, washing yourself with soap irritates
it...I use soapless cleanser called cephasil...good luck to ya.
Jayne

Hello,
Is there a PA chat on Monday and Wednesday night or Monday and
Thursday night? I tried to get into the chat room at about.com
tonight because it is listed as a chat night on the PA Support
Page. But at about.com the PA chat time is listed at 8:00 PM
Thursdays. I tried to get into the chat room for the PA chat and
I could not. Anyone know what is going on?
Lee Ann

Hello Everyone,
This is perhaps the third time that I have written in many months but I was
moved by the letter from a writer (Carol I believe) whose doctor frightened
her so much. I want to share my thoughts on this visit and my experiences
with the disease we share.
While I do not have the luxury of being on line as often as I would like, I
am fairly informed about the illness having had it for over ten years and
getting the opinion of some very good and some very bad doctors.
I have learned from both. And of course from all of you here. And I might
add have made some choices of my own.
What I find is that if the doctor is well informed, he is less likely to jump
immediately with a blanket of medications unless there are two factors:
One is there is some damage to the joints.
Two that the person is in pain which presents social or occupational problems.
Like several of the writers on this site, I too have refused MTX and other
so-called disease modifying drugs and opted for a change of life style. Less
is now more.
So far so good.
I am enough of a fatalist to accept that things may change tomorrow.
I know that I am not only lucky to be able to do less but I am not a young
person with such responsibilities as raising children or working at a
physically challenging job.
Like many of us, I have to take a rest not daily but often enough to know
that it is part of my life and not just a passing phase.
The quality of life is certainly important when making some of the decisions
that we have to make and I understand that the prevalent use of MTX , Enbrel,
Arava and others are options that many of us would not have had years ago. I
mean positive options that give us back our life. And I say that even with
the full knowledge of the side affects of them.
For those of you who have chosen that route, I cannot overstate the
importance of blood tests and as often as twice each month in order to avoid
irreversible complications. That caveat came from every doctor and every book
that I have read on this subject. It seems that freedom from pain has its
price.
And for the person who does not believe that all labs are equal it may even
be a good idea to try more than one lab. I have had an experience with a lab
where my cholesterol count was given to me as 350 when it was 187!
What I find puzzling is the casual (so it appears to me) ingestion of
alternative medications when drugs on the market for years are rejected as
"scary."
For starters, homeopathic medications can do just as much damage as the
potent drugs that some of us fear yet we take these at the recommendation of
a friend or someone who has had "relief" from taking them. Allow me to
clarify.
I am a tea drinker.
I love to drink green tea. It seems fairly benign. It is. Yet, there are
teas (no need here to drop names) that are very strong and do affect the
immune system and not necessarily positively.
I still drink my green tea with small bits of toasted rice each day. But I
would certainly do some homework before I would consider anything more potent
that green tea or aspirin shampoo (which I also use) or some family remedies
that grandma made in her kitchen be that kitchen in Tibet or Dublin. In fact
my rule of thumb is to cautiously try some external "magic" but tend to look
twice before I ingest any internal one.
Somehow I feel connected to people on this site. Our disease makes us all
somewhat related and certainly alike in many ways. So the letter from Carole
troubled me.
I hope that Carol will seek other opinions than the one she got from her
"ogre" of a rheumatologist. I recall early in my disease a doctor told me
that unless I go on MTX, I would be in a wheelchair in three years. Instead
in ten years I walk three miles a day get X rays yearly and so far no damage
has been done.
Like in every profession there are doctors who are secure and take an
interest in the work that they do. Others who try to scare the patient are
not evil or necessarily ogres as I suggested above but often overworked with
a load of patients that is getting larger as the population ages and
rheumatic diseases (not always PA) become more prevalent. That is probably
most true for the rheumatologists who often see a patient every fifteen
minutes for many hours daily.
Often scaring a person can eliminate a lot of the time needed to explain the
many faces of our disease and the many possible ways to treat it. I
hope that none of us is coerced into taking any medication because of
intimidation or bullying by a doctor nor tempted to experiment with
scientifically untested herbs.
I have taken the last few minutes of the day to express my opinion (and it is
only that) but I also want to thank you all for sharing yours. I enjoy
Margaretha's optimism and common sense.
I do look in every day or so and learn more than I can ever contribute.
To paraphrase Harry Potter I wish we could each find our own "Sorcerer's
Stone," and make all our aches disappear. ZAP!
But for now I am off on my broomstick.
J

Hello,
My name is Jocelyne and I live near Montreal in the province of Quebec.
I was diagnosed with PA almost 2 years ago and since summer '98 I am
taking all kind of medication: methotrexate, prednisone, folic acid,
plaquenil, naproxen (which has been replaced by vioxx since January
2000), zoloft for depression. My hands are terribly painful with
arthritis and psoriasis. It seems that no medication cures my health
problems and my rhumatologist cares for my arthritis but cannot take
care of my psoriasis. Then I see my dermatologist and he looks after my
psoriasis but he says there is no cure and it should go away some time
as it came. He gave me many prescriptions like topicort, dermovate,
dovonex and many more; it helps but it is no cure. I am rather
discouraged.
My psoriasis started in 1996 after I got a cellulitis during summer 1995
and another one in February 1996. My cat scratched my hand and I got a
terrible staph infection each time. Then my health problems began but,
I did not make the relationship between those infections and my skin and
joints problems. It is later, mostly during 1999 that I understood what
happened even if all doctors say it could be many underlying reasons
for my PA.
I do not know how to get rid of my PA and to have at least a better skin
on my hands because writing is difficult for me, handwriting is worse
than computer writing; I have many scales on the palms and under them my
skin is so thin and red and each day or so it chaps. I started to have
a similar problem on my soles but the skin is rather thick and cracked
instead of being thin.
Any ideas to have a better mood and some hope for the future. thanks to
everyone who cares. Jocelyne Duguay-Varfalvy

Hi Michelle
out
completely without a DMARD<
Please do not worry about me. I guess I am the one toughing it out without
DMARDs, but then I have taken DRASTIC lifestyle changes. Its easy for me
because I am not married, have no children, have no employment, so I am able
to plod along in my own little world, without people making requests from
me. Yes when people do want want me to help, I find that a BIG change in my
lifestyle and life gets painful for a while. However I do have pain killers
to get me through. To my knowledge NO damage has been done to my joints,
tendons or muscles, but then I am constantly aware of my surroundings and
what I am doing. However, add a husband, add a couple of children and I know
I would be running for the Pharmacy!
Love and God Bless
Gillian

Hello, my name is Kory. My only biological sibling was diagnosed
positively yesterday with PA and psoriatic spondylitis. My mother
and I are both RN's but there is limited info actual known and less
in the area we live in. My sis is 28 yrs old, married and has a 2 yr
old. She
was bombarded with info yesterday and very scared. Could someone
please give me input on methotrexate vs prednisone? The doctors
forced her to decide yesterday and she chose prednisone because she
was not sure if she was going to have any more children although she
does want to. They are sending her to physical therapy this week
also for aggressive therapies. Her joints are painful although not
swollen
or with abnormalities noted at this time and her skin lesions are not
severe at present any input would be helpful or email address of
persons willing to correspond with her. She is very scared I know
and
I too am trying to figure out ways to be most supportive to her and
finding this website was one of the first..also..how hereditary is
this? my neice at agee 2 already has psoriasis. thank you for any
input and those of you open and willing to share your experience,
strength and hope with others to be courageous. god bless

Hi Kim, Jayne, Carole,Janie and the others who posted today.
NSAIDS= Non Steroid Anti Inflammatory DrugS, first line treatment, generic
names like aspirin, indocid, difene.
DMARDS= Disease Modifying Anti Rheumatic DrugS, second line treatments,
Sulpahasine, MTX Enbrel.
Is there anything else after theses??????? Third line for example????
Kim: I have noticed that my memory is not as good now as what it used to be,
but to as if it's due to PA I cannot say! Exhaustion more like.
Jayne: I agree with you 300%, it is a personal choice as to how YOU wish to
deal with your condition.
CB/Carole: Thank you for the details of your Rheumy appointment, which I
found really interesting. You Rheumy is correct, although I really feel he
gave you the WORST news. 'it is crippling, deforming, SOMETIMES 'wheelchair
type' disease and to be taken seriously.' However I think the statistic of
you developing the severe form of this condition is one in two thousand. The
trouble is they as yet have no test to say who has a mild form of PA and who
has the severe form of PA! Therefore they will treat everyone as if they
have the severe form, just in case. For me it was a question of personal
choice based ON knowledge.
Janie: Sorry to hear about your Mom with osteoarthritis. I thought this form
of arthritis was 'wear and tear', rather than driven by the immune system?
If not, can you please let me know the DMARD therapy as a Cousin here has
OA!
Love and God Bless
Gillian

I recommend that you at a minimum ask your pharmacist before you take one
pill. If you are allergic to sulfa and you find out the hard way that MSM is
one, you could end up going to the hospital via ambulance as happened to me.
I developed an allergy to sulfa from taking it for a urinary tract infection-
I got a rash. Next time- silly me did not remember to include it in my drug
allergy section of the history I gave my rheumatologist. So next thing I
know, after two doses of the Sulfalazine, I am having my nine year old call
911 because mommy can't breathe.
I was glad to be alive, and humiliated that I was taken out of a my house via
a stretcher in broad daylight, and then the next day home with no troubles.
All the phone calls expecting I had a heart attack had to be answered with me
saying I "oopsed" with some medication and now I am fine.
That is me though, the shame is almost as bad as the near death experience!!
Michelle

Hi Carole, First your mood sounds better...good luck in the health food
store!!!
and a note...I have been on nsaids for two years now...no dmards...so
far no further damage. I know the risks of nsaids but the dmards scare
me to death. My reumy doesn't jump into them (obviously - it's been two
years) and I am getting some relief. I think if I had my tubes tied I
wouldn't be so scared of the other drugs. My motto is, if it is working
for me, stick with it. I still get my labs done every two months and am
due for another mri last month... I think it is a personal choice, what
meds to do. I know the majority on the list, swear by dmards. and that
is ok. Oh and also, a second opinion is a great idea..I happened to
have four....take care,
Jayne

Hi everyone,

Nancy asked: What is MSM? It is a nutrient (methyl-sulfonyl-methane) MSM for short. Here's info from a pamphlet I obtained about it: Plants obtain MSM, a form of sulfur, from the soil and pass it on to humans in the foods we eat. Every cell in your body has sulfur in it, and sulfur has literally hundreds of functions in your body. It is like a T-bar that holds all your co