For those who have Psoriatic Arthritis

For the blisters to be shingles or the precursor to shingles, you
would have to have had chicken pox. Chicken pox is one of those
lovely things you never quite get over. It is always in your system.
Diane
Toasty in Texas

Hi Kathy
Well I have only read that PA is NOT as severe as RA. I refused MTX in 1994,
while in Hospital and again since, many times. So far I have no further
damage to any joints and the psoriasis is slowly clearing. I would have
thought that if this PA was progressive, after six years drug free, I should
now be in a wheelchair permanently.
Having stated that, I should point out that I have made severe lifestyle
adjustments.
And in this lay the answer to your query.
Personally I think much depends on you. Only you can really decide what you
want from life: high flying career, husband, brood of children, the detached
house, two cars, fifteen mobile phones and so on.
All this has a major affect on your condition, stress levels, finances, not
enough time in the day.
If that is the life path, then you have no choice but the drug approach. You
then have to accept the drug side effects.
Me? Well I stepped off the gas so to speak. I am constantly away of what I
am doing, energy levels, joint protection, nutrition, rest, and if I do
place an ankle in a bog hole, I Pray I have not jarred the joint. By
adopting this lifestyle, I have no stress, therefore I can afford to live
with my condition, drug free.
I suppose it is akin to placing a round peg in a square hole. It will fit
with a bit of force, hammer, but damage will be sustained to the peg.
Alternatively you sit back and wait for the square peg.
Love and God Bless
Gillian
A friend is, as it were, a second self.

Well the last partner I had, thought it had it all sussed out!
He constantly said that he would only be too happy push my wheelchair to the
beach in order to watch the sunset. The fact that a wheelchair would not fit
in his 'Sports Car' and I had severe difficulty with the low seating
configurations, was not a problem. [He could not give his car up] In his
mind he had gone from A, marriage to B, disability overnight! The pain,
frustration, anger, lost days at work, hospital appointments, medical
appointments, lack of sleep, hospital admissions, worry, anxiety, were
washed over. The fact that he would have to 'deal' with this, prior to the
wheelchair, had not entered his mind.
Therefore I said, "Thank you very much but no thanks".
In hindsight, perhaps if I had accepted his invitation, I would be in a
wheelchair now, just to make his life easier?????
Love and God Bless
Gillian
A friend is, as it were, a second self.

I hope all of us will show a little patience here. I for one read all the emails received. If there is something I want to reply to then I do. Sometimes someone will answer a question with the same answer I would have given. In that case I just leave it alone. I know we all get side tracked from time to time. It's easy to do. Sometimes it is because we want someone to listen or we just want to tell others about our experiences with PA and it just leads to other things that tie in together with everyday life. I'm not dropping the list and hope all of you keep on posting. We all have something to say and learn from each other. This is not a disease that only one person has the answers to. I hope everyone will keep these thoughts in mind. Another thought: All the literature I've read states that this is a mild disease. I don't know where they come up with that. This seems anything but mild because it causes so many problems with other body systems and seems
to debilitate so many people. Incase you can't tell, I'm feeling particularly BITCHY today because I'm in alot of pain and can't get comfortable. Thanks for listening !!! Cassie

I only took Prednisone for the initial flare which put me on my butt. I had muscle weakness that the Rheumy said was a side effect of Prednisone. I'm not sure it was only due to the med because I had it prior to the 6 wks that I took it. The weakness made me unable to stand or walk without assistance. I had to use a walker for awhile and my teenager did'nt want to be seen with me. It embarassed him. I felt like a 100 yr old woman, unable to anything for myself . I had bad depression while on the med. I'd cry all the time. I remember just wanting someone to shoot me and put me out of my misery. That is the only time I ever felt that way. Now a thank you to all for the helpful information I received about hand surgery. I lost my Dr. Grip pen but will get another it's great. Next, I'm going to try the parafin wax. I had seen that before but it was alot more expensive. I keep looking, I don't remember where I saw it advertised but thought it was in
Arthritis Today and might have overlooked it. Cassie

To Jane H.
I was for a time on MTX 15mg once a week, tablet form, it not
only makes you extremely exhausted, it caused sore spots in my
mouth, and in my nose....the only good part was that no one could
see them, but the did hurt....I was given an Rx for 1 mg folic
acid to take once a day and that did help. The MTX also made me
feel nauseated and I lost hair.
I have now been Dx with upper lobe pulmonary fibrosis and that
has caused more problems for me...no more MTX, only Enbrel which
gives me great flexibility but not much pain relief but I am glad
to have the flex., it would be great for some pain relief but I
take what I get. For the fibrosis I now take chemo once a month
for 12 to 18 months to try to slow the disease...the cytoxin also
slows me...very tired, anemic, low white and red cell counts, and
a tremendous hair loss, appetite loss too. But it was a better
choice than Pred at 40 mg daily for 6 months, that causes great
weight gain, and never helped the PA, or P in the past, just made
me feel terrible...I go for Tx #4 on 8-11, and the pulmonologist
will recheck pulmonary function after Tx #6, 3 to go for that....
But I am glad to be here and reading this list...I did get a
scolding last week for not dropping the old trail of notes, I
think I have that corrected and this not should arrive alone...
=====
If you can read this e-mail, it's a good day. Z

Hi all,
I sent an introduction in last week and I thought I would ask a couple of
questions.
I have had PA symptoms that started about 4-5 months ago or so. At first it
was just my feet....and then over time other parts chimed in.
What I'm wondering is, is this thing always progressive? Do I have to kind
of prepare myself for this to get worse and worse or could it level off?
Second question: My family practice doctor has three other PA patients and
seemed pretty up on his info when I went in a few weeks ago and got this
diagnosis.
He said the idea is to use the mildest thing possible to control the pain and
stiffness.
Right now I'm doing ok on Aleve.
I'm thinking about going out of town to see a rheumatologist (I'm too new at
this to be cool and write "rheumy"!) just on the principle of the
thing--making sure I'm getting the best advice I can get, I guess. If I do
it, I should do it before the new insurance year starts our deductibles over.
So--How essential do you all think that step is?
Thanks for any information and opinions!
Kathy

Hi All,

I am having a hard time making a decision. Time to bring in the "Big Guns" and ask the group for help. I went to a surgeon today about my carpal tunnel in my right wrist, and as expected, he wants to do surgery soon. I am going to a new Rheumy on the 29th of August and expect to be put on some more aggressive medicine. My former Rheumy took me off Sulfasalazine and gave me 8 days of Prednisone. It didn't help the pain at all and more joints are involved now. I had a very difficult time getting any answers from this last Rheumy, and hope this new one will be easier to talk to. I have been in so much pain for the last few months that I don't feel like having the surgery until I get the arthritis under control. Have any of you had carpal tunnel surgery while you were on MTX or Embril? What were the results? I have been having a lot of trouble making decisions lately. Everything seems to overwhelm me. Any help or advise will be greatly appreciated.

Thanks for being there,

Allayne

Hi all --
I'm stepping on my moderator's hat to note that the
volume of the list is getting a bit -- high. I've
just done some math and figure that for the month of
July we have averaged close to 30 emails a day, most
from the same people.
And I am handling more requests to unsubscribe.
People are telling me that the resource is good but
the total volume of mail is TOO MUCH and they can't
keep up with it. Yes, I tell them about digest and
web-only, but they've had enough and want off.
So I'm going to make some suggestions:
1. Try to keep all your posts centered on the subject
of living with psoriatic arthritis.
2. Rather than sending six or seven 1-line emails in
a row, save them up and send just one email with all
six sentiments.
3. If you have an "off-topic to Donna" letter -- send
it to Donna, not the list!
4. Trim the message you are sending so it does not
include the message you are answering.
5. Use the appropriate subject lines. "Digest #486"
is not an appropriate subject line because it does not
tell the reader anything about the message!
6. Please try to remember that this is a list for the
discussion of psoriatic arthritis, and try to keep all
posts at least moderately close to the subject at
hand!
Did I repeat one of those suggestions twice?? I might
have, but I think it bears repeating. I have done
this "list editor" thing now for over a decade and
have some experience with it. It is part of what I do
for a living, after all! I don't expect this list to
maintain the standards that I set for my professional
history lists, but I do ask that we all cooperate and
try to make this list a place that people don't have
to leave because of volume.
Finally -- thanks for all your great support and for
helping to make this list the wonderful place that it
is! I don't think we are too off track, but am
suggesting that we all think a bit before we post that
next email! Thanks!
Robert

I had taken prednisone for about two years and slowly was taken off
of the drug. I experienced extreme mood swings during this time and
thought I was about to go crazy. Later, I found out that it can be
dangerous coming off of the drug due to the drug stops the body from
producing a particular hormone, since it replaces it, which helps
reduce inflammation. The problem is that once you stop the drug, the
body must start producing this hormone again. If it doesn't, then
you may end up in the emergency room with serious problems.
Monty

Hi All
Well that was a fascinating study on sleeping positions.
"I do not move, whatsoever!" How do I know this? Because Hermes would not
stay snuggled up to me if I did. When I wake in the morning, as soon as I
swing an arm out, or a leg up, Hermes bolts!
I keep telling you I am abnormal!
Love and God Bless
Gillian
A friend is, as it were, a second self.

Kelly, your doctor is an idiot. People on MTX do experience extreme fatigue. This is a chemo drug and everyone knows that people on chemo are tired. Our fatigue may be due, in part, to the stress of the disease, the pain, the sleeplessness, etc. But it is definitely there, especially the first day or two after a dose of MTX.

Hi Tracy
No do not laugh, but: hyperkeratosis thickening of the outer layer of the
skin. It may occur as an inherited disorder, affecting the palms and soles.
Tracy I would go back to your Mother and ask her if they put everything in
the 'right' place when they conceived you!
Love and God Bless
Gillian
A friend is, as it were, a second self.

Sorry I was slow to throw in my 2 cents' worth. The challenge I seem to share
with most of you in sleeping is that I can only be in one position for so long
before it hurts. So, like most of you, I move around at night. I have the best
luck if I can fall right to sleep, which seems to happen best if I shower,
bathe, or spend a few minutes in the hot tub first. If I can't fall asleep
almost immediately, I'll end up tossing and turning for an hour.... So I love
that hot tub!
Mary in Los Gatos, CA

Subject: Re: Re: Sleep?
Hi all, just had to add my 2 cents here---- I have a sleep rotation schedule
almost as predictable as Ginger-- my bed sharing dog. Donna's comment about "
fixing the nest" made me laugh... My husband call my pillows my entourage
(?sp?). 2 for under my knees if on my back or one in between the knees on the
sides. One for behind my back ( usually Ginger perches atop that one) and one
to rest my "top" arm on and hug.Then it goes side, back, side. Where ever I
fall asleep ( which usually is not a big problem) I remain for about 2 hours.
Then I wake up uncomfortable (especially the hips) and begin the hourly
rotation, each time involves the repositioning of all the pillows and of
course, the dog. Poor thing really wakes up ready for a good nap in the
empty bed. I feel like I have just finished a hard nights work. Jim (hubby)
finally insisted on a king sized bed a couple years ago so he could claim a
few inches of space for himself. I also have to have the fan on (at least
low) but that requires making sure that the covers stay on certain joints
that tend to be a whole lot stiffer if ope to the "breeze".
It sounds like a lot of you share similar sleep stories..... Just
writing about it helps me understand why I feel so fatigued half the
time....Its like adding a full time job!!!
It is very cool and damp this morning and everything hurts! I also sound
like the percussion section of the band--- all joints are harmonizing .
Nancy in Wisconsin

I sleep on my right side with the right leg straight and left leg bent, or bend both legs. I toss and turn if I can't get comfortable then end up in the same position all over again. Can't stand to sleep on my back. Like to sleep on my stomach but it makes my back hurt. I wake alot of days feeling like someone beat the crap out of me and beg hubby to rub my back to loosen me up. I've had times when he had to move my feet back and forth to loosen them up before I could get out of bed because it hurt more for me to lay there and do it myself. He thinks that is all in my head and I just wanted a massage but it works. Don't know what I would do without him!

Gillian,

I toss and turn all night being uncomfotable in most any position, but do get greater relief with the same position you described. I can only take it about 45 minutes before I feel like I'm laying on an exposed nerve, but it is initially the most comfortable.

Kelly,

Can't tell you about the period stuff, I was already going through menopause when I started MTX. However, it did take about 6-8 weeks before I felt any relief. I just woke up one morning and literally hopped out of bed. No pain, no stiffness, no fatigue. Didn't even hurt when I danced for joy all over my home! Good luck!!

I start out on my left side with a pillow between my legs. Then I
rotate all night because of all the aches and pains. On a good night
I can sleep about an hour at a time; on a bad night 20-30 minutes.
Diane
Toasty in Texas

I sleep only on my back with my legs on a pillow. If I try either
side...my back throbs.... it is a nightmare.. Jayne

I am new to this site, but a long-time PA survivor. How greatful I
am to read letters from others and to NOT feel alone anymore. God
continues to remind me that I am not the only person to bear this
condition that refuses to go away or show any compassion. Almost
twenty years now with PA, since my freshman year at college.
Currently, I am waiting on approval for Enbrel. Yes, I've tried the
medicine cocktails of MTX, Prednisone, Sulfa drugs, etc... with only
minimal relief. I'm holding out that this new drug will be the
right one. My name is Monty and I hope to share stories with
others. Is there a time/day for the chat room? Thanks!!!

Hi All
Well I have heard and read some medical facts on this.
One was the discovery last month of some viral/bacterial cause for Cancer of
the womb, cervix. It was broadcast on BBC Radio Four, Women's Hour. In light
of this, I believe they were going to reorganise the screening. Rather than
look for the pre-cancerous cells, they would not look for this BUG.
In fact a telephone caller to the Radio program was male and asked if there
was anyway he could protect his wife from this bug. I thought that was
lovely!
The second fact I read and I think it was in McPherson book, The Road Back.
I have a relative who is a Gyn Nurse with Lupus, she performs these Pap's
and I am sure I mentioned some infection, probably my friend the Strep,
which resides happily inside the cervix. My angle was, perhaps she should
consider her career, as she 'might' be coming in contact with the Strep, due
to her job.
Now as to IF this Bug is related to PA, well I have not read or heard
anything on that connection.
I am pretty sure that is we took a cross section of females, we would
probably find a majority of them have abnormal Pap smears. Now perhaps that
would be well worth looking into. How many female members at Onelist and how
many of those had abnormal smears? Perhaps a simple POLL!
Love and God Bless
Gillian
A friend is, as it were, a second self.

Hi Valerie and everyone
Yes...my paps are always abnormal...countless
colposcopies...biopsies....all the time! Had a piece of my cervix
removed (cone biopsy)..... I never related it to the pa...since at the
time, never knew I had it. I will say once again. It all happened (pa)
afte the birth of my second child. I guess that goes along with, trauma
can bring it on. If you consider that a trauma to the body. The weird
part is my psoriasis went nuts during both pregnancies....it was
awful....Jayne

Hi All
Here is a Question, what from me?
Just out of matter of interest, in what position do you sleep?
Flat on your back? On your tummy? On the right side, or the left side?
If on either side, what position?
I sleep on my right side in what is called the 'emergency position'. Right
leg extended fully, left leg bent at knee.
Love and God Bless
Gillian
A friend is, as it were, a second self.

Are others coming to the September weekend at Lake George in New
York? Do you new people know about it? I know that Michele our list
founder is planning on going and my hubby and I plan to go. Anyone
else???? LaRita
Thought from LaRita
"If you believe everything you read, better not read"
Japanese Proverb

Hi all
Thought I would finally introduce myself to you after reading all the
interesting postings.
My name is Davena and I live in London, England. I have one daughter
aged 6 years whom I love to bits and a boyfriend who most of the time
acts likes he is 6!!!
I have had Psoriasis for about seven years now. Since February this
year I started getting really severe back and neck pains and went to
my GP. He admitted me to hospital at the end of Feb for tests. The
tests found that I had a kidney infection which they explained was
why I was getting back pains. I was in hospital for 2 weeks in which
that time the kidney infextion cleared up and they began testing me
again. They tested me for kidney stone and more tests on different
organs even though I kept saying it was just my back!!!After having a
camera shoved down my throat and still not coming to any conclusions,
the doctors decided that maybe there was a problem with my back.
I then saw a Ruemy who said it was a possibility that I might have
Spondytitis. They then discharged me with Ibruprofen and told me to
wait for an appointment. These pills were just not strong enough so
my GP prescribed some meds called Tramadol.
I've since then seen the doctor, had the blood tests and X-Rays. The
blood tests were ok but the x-rays showed that my spine is too
straight and that the bottom of my spine looks like it is begining to
fuse. I have had physio but had to finish after eight sessions
because it was too painful.
I have has another blood test for B27??? and will have to wait until
October for the results and to see the doctor again.
Since I have seen the doctor, my back and neck have got worse. My
left Knee hurts as does my left hip and ankle. The toes on my left
foot go numb if I walk more than 5 minutes. I get up in the morning
feeling like I'm 99 and not 29!!! I feel tired all the time and have
no energy. The pills no longer work and I feel that everything is
getting on top of me.
The thing I hate the most is that I can no longer bath my little girl
or get on the floor to play with her.
If you haven't fallen to sleep by now I would just like to say that
I'm not always moaning, but when you try to speak to someone who
hasn't got these problems they make you feel that you are making a
mountain out of a mole hill!!!!
Thanks again for listening
Davena

Hi Beth,
Welcome to the group! I think you will find it a valuable source of
information and wonderful support. Though there are common symptoms with PA
( as you will hear from everyone) there is a great variance in the severity
we all experience. It is so often precipitated by a big life trauma or stress
(like the birth of a child). I am sure that you will find a treatment plan
that will work for you , just hang in there with the rheummy till you get
there.
As far as breast feeding goes, please consider what a great start you
have given your baby already. Considering that the breastfeeding alone is
taking a lot of out of you, it is an added stressor. Added to the demands of
an infant and a adolescent (not mentioning hubby/ home/ job etc) you may
want to think about just bagging the breastfeeding and not think about
getting off the meds . You may have a whole lot more to offer your baby if
you have less pain and more energy. Havng been in your shoes in my 30's with
preteens and and infant, I remember how horribly fatigued I was, and that was
before my P/ PA introduced itself.
Good luck and hang in there!!
re: Subject: Tea
Hi Judy,
I started drinking at least a cup or 2 of green/ tea a day about 3 months
ago... I find that when I do, my mobility and pain are better than when I
don't. I have wondered if it's antioxident properties really have
antiinflamatory effects or if it's just that my imagination.
re: canning
Hi Donna,
You made me remember that last fall, after a weekend trip to Door County
when I bought about 3 bushels of apples, I spent 2 days canning applesauce. I
was in the midst of an unusual energy burst. All the jars stayed on the
counters and table for a week while I recouped. After standing all that time,
I could not make it down the stairs for a few days except on my butt. I would
love to do more this year, but only if my daughter comes up from Ilinois to
help. (She loves it, too) Thanks for reminding me. Hope you recover faster
than I did!
Love and take call all!!!
Nancy in Wisconsin

Hi all --
About.com Arthritis guide Carol Eustice has posted
an article on the subject of green tea & arthritis,
and it can be read at the following URL:
http://arthritis.about.com/library/weekly/aa080299.htm
with metta --
Robert, North Jersey Highlands

We have all been where you are now and do understand. I was always a very physically active woman. My father started me at 6 helping him build houses, hand plow gardens, etc. I've always been a type A workaholic (not by choice, he just trained me that way). So having this PA reallys smacks you down hard. It took me many years suffering for my actions to finally get it through my hard head I couldn't do what I wanted whenever I wanted.

I have finally learned to substitute other things for so much physical activity.

Like I dabble in watercolor, acrylic and oil painting when my hands work. Someday when I have money (HA!) I'm going to take some photography courses. Still physical activities but in small ways not hurtful ones.

You may need to re-think how you can be physical--like coaching a kids sport team rather than actually trying to be the team quarterback. Or being a "Big Brother."

Good luck!!!

Gillian mentioned that giving birth with pa could be dangerous.... What
do you mean?

Hi Linda
You might like to know we have NO such colloquiums in Ireland. It is a well
known fact among the peoples of Kerry, "Wells Fargo" never got this far!
On the other hand we do have a colloquiums for this, "I am off to
Killarney!" OR "He is for the Birds". My Favourite, "He is a card short of a
deck!"
Killarney used to have an asylum many years ago, so if you wanted to go
Crazy, that is where you went. It really does add a new meaning to that song
"How do I buy Killarney!", would you really want to?
Love and God Bless
Gillian
The whole imposing edifice of modern medicine is like the celebrated tower
of Pisa- slightly off balance.

Hi The Sherman's
symptoms of the disease aren't present...??<
What are the most obvious symptoms? According to J Moll; Psoriasis, Nail
dystrophy including pitting, onycholysis, horizontal ridges, keratosis or
discoloration. Asymmetrical oligoarticular arthritis involving scattered
knuckle joints-DIPs, PIPs, or MCPs. The mildness of this pattern of
arthritis may lead to the diagnosis being overlooked. [to me the photograph
showing this looks normal. I cannot see any abnormal features] I may appear
almost indistinguishable from RA. The 'textbook' pattern, less common than
the above manifestations, is widespread involvement of DIP joints. Although
characteristic, it has been over emphasised in the past as it is seen in
only about 5% of patients with Psoriatic Arthritis.
"Sausage Digits" may affect the hands and may be generalised involving all
digits or localised to one finger or toe. This appearance is due to a
combined IP arthritis and flexor tendosynovitis.
Arthritis mutilans occurs rarely.
Laboratory features; Negative for the rheumatoid factor. HLA Cw6 is
associated with Psoriasis, HLA DR7 with peripheral arthritis, HLA DR3 with
erosive arthritis and HLA B27 with sacroiliitis.
My last Rheumatology visit, he noted that I had mild puffiness in my knees
among other things. This threw me because I thought my knees looked normal!
I suppose the difference is, I perceive my body as being normal because I
see it everyday and it looks normal to me. Only by going to a person who
does not see you everyday, well they see these problems.
Yes I had some sausage digits [In fact I am now feeling hungry so will put
some sausages on] but after the flare they vanished. OR so I thought. On a
visit to some relatives while staying at there home, wearing my sandals, my
Cousin said, "What is wrong with your toes?" I looked down, saw nothing
except my normal toes and foot? I replied nothing. She then said, "Your
second toe is smaller than your third toe?" Yep I have to admit that is the
case! However I am so used to them, so what? I just replied, "Oh that is
where the arthritis started, the toe shrank afterwards!"
Love and God Bless
Gillian
The whole imposing edifice of modern medicine is like the celebrated tower
of Pisa- slightly off balance.

Hi Terri
Thank you for the compliment.
LDH? Is this Cholesterol by any chance? If so yes I have high cholesterol.
They have checked my diet and my Mom, who is the culprit. Mom has high
cholesterol so I have inherited it from her, although the rest of my
siblings are normal. Honest they are, in every sense. No P, no PA, no
cholesterol.
As for ankle swelling, so far I have escaped, but Mom has this problem.
Shucks another twenty odd years I what is the betting I inherit this as
well?
Two jobs and two kids is enough to make anything swell. Take time out to
prop those ankles up, especially in the heat. Mom finds her marbles in warm
water with Peppermint and Lavender does the trick, although I do not
recommend this as any form of 'air freshener', enough to blow your head off!
Love and God Bless
Gillian
The whole imposing edifice of modern medicine is like the celebrated tower
of Pisa- slightly off balance.

Hi toddnagano@...
I know I reside in Ireland, but I was sent to what they term an "Independent
Doctor", for a medical assessment.
Like you I felt anxious, did not know what would transpire. Therefore I
asked my Physician what would happen? He said, "Gill just laid it on the
line. Tell them straight, you have no objections to working if you can CURE
me. And the sooner they CURE you the better!" [we know there is no CURE,
place the ball firmly in there Court]
Off I went loaded down with my medical file, I have all the letters from the
various specialists. I was called went in to an examination room and the
Doctor asked me a few questions. I then handed over my file, which he
flicked through, but only read a few Consultant letters. He then asked me to
hop up on the couch, examined my abdomen, liver and spleen area. In the room
was also what they call a witness, a lay person who was in situ just to make
sure all was fair and I suppose to make sure I did not attempt to 'bribe'
the Doctor. After that I sat down whereupon he said, "You are an enigma". I
then left not knowing what I had encountered, let alone saying about CURING
me. Three weeks later I was granted disability!
I thought the physical examination would concentrate on my joints, but he
was not interested. His main/ only examination was my liver and spleen.
At this time I had just returned from England with my concrete diagnoses,
letters in my file and was taking the EPO, so there was little in the way of
inflamed anything. The fact that he was more concerned over my liver, spleen
still has me perplexed!
Love and God Bless
Gillian
The whole imposing edifice of modern medicine is like the celebrated tower
of Pisa- slightly off balance.

Hi Bob,

I also have a lot of soft tissue pain. It has been much worse for the last two months. My joint pain moves from place to place, but the soft tissue pain is constant. My rheumy called it soft tissue rhumatism. I didn't know that it was PA. Have you found anything that gives relief? It really makes doing anything difficult. If I use my arms for any length of time, I sure pay for it the next day. I love to bake, but can't mix anything by hand or use a hand mixer. If I use my stationary mixer, someone else has to empty the bowl because it is heavy. Thank God for Sara Lee and Mrs. Smith!

I have not had my hearing yet, but I was sent to a psychologist and a rheumatologist. I didn't get much from either one of them. I saw the psy first, and he just asked me some silly questions about who was president, what did I have for dinner the day before, and some math questions. His office was on the second floor and I was in a lot of pain from having to climb the stairs, so I messed up on the math. I find it very hard to concentrate when I am in pain. The rheumy didn't ask me any questions at all. I had back and knee x-rays, and he checked my wrist, knee and feet. He wasn't in the room more than 10 minutes. I also had a blood test done. I have no idea what the results were from either visit. I hope to hear soon about a date for the hearing. It has been a year now and I still haven't received any compensation. Boy, that really hurts. I am going to see an attorney about another appeal from my long term disability insurance. They still haven't paid a dime.
It is so depressing having to prove that you are sick. I have been in a bad flair since the doctor took me off sulfasalazine. I am just on voltaren and pain meds. I finished an eight day course of prednisone about 6 weeks ago. I don't know what he will try next, but I am ready for some relief.

I wish you good luck with your exams. Let me know how things go. This is such a long and frustrating process. Sometimes I feel so degraded even attempting to get disability. Nothing shows on the outside except swollen joints, and when I say that I have arthritis, they look at me as though that is no big thing. I wish this disease was more widely understood.

Allayne

THEIR
DOCTORS, ANYONE BEEN THROUGH THIS, ARE THEIR DOCTORS USUALLY FOR THEM, OR DO
THEY ACTUALLY CARE ABOUT HOW BAD YOUR PAIN IS AND HOW STIFF YOUR JOINTS ARE.
ANT INFORMATION FROM ANY OF YOU ALL WOULD BE APPRECIATED.
THANKS...........................................<<<<<<<
Dont expect to get that appointment anytime soon !!!!!!! I had the same
thing said to me by the judge on may 11th (my hearing) , ANd I still HAVENT
GOTTIN THE APPOINTMENT FOR THE GOV. DOCTOR!!!!! The damn bitch secretary
says , "i work for 10 different judges and were all backed up"..... If you
get your appointment before 3 months I will be very pissed...lets just put
it that way....this whole system is so fuc*ed up , it can make a person go
postal...

Among all the problems we all experience, I am wondering if any of you or how many of you have been experiencing problems with your drug store. I have noticed in the past year 12-18 months that this is a reoccurring problem.

I am so tired of the prescribed meds not being in stock and having to wait for the order to come in. This happens not only when I go with a new med (FYI: I, too, am overmedicated and its beginning to make me re-think all doctors and meds), but when I call for a refill. When I show up the next day they don't have it, didn't bother to call to let me know nor do they bother to offer any options. I guess pharmacist are getting like doctors, too busy to care.

This has happened with 3 different stores. Do we all take just such unusual meds? Do drug stores not keep adequate inventories anymore? Maybe because the chains are building stores on every corner now, they don't keep large quantities of anything and run out all the time. Managing my health care and my parents is difficult enough without this newer complication. Any thoughts or similar experiences?

Janie Howington

WELL WENT FOR NY HEARING YESTERDAY, THEY WANT TO SEND ME TO SEE THEIR
DOCTORS, ANYONE BEEN THROUGH THIS, ARE THEIR DOCTORS USUALLY FOR THEM, OR DO
THEY ACTUALLY CARE ABOUT HOW BAD YOUR PAIN IS AND HOW STIFF YOUR JOINTS ARE.
ANT INFORMATION FROM ANY OF YOU ALL WOULD BE APPRECIATED.
THANKS...........................................

I do not have sausage fingers or toes! In fact I have hardly any
psoriasis, just a tiny patch on one leg once! New rheumy thinks I was
misdiagnosed following an scarlet fever episode in college. He thinks
that I am a seronegative RA patient and was diagnosed incorrectly by
his ex-partner! I guess it does not matter since I have been taking
DMARDS for two years. I have swelling in my joints but it is totally
symetrical and is in my hips, feet, knees, ankles and when it is
very humid my fingers swell big time but recede when the pressure
changes.

Please...I would like to know...who doesn't have sausage
fingers/toes???? (I don't)...just wondering how they came about the
diagnosis if the most obvious symptoms of the disease aren't
present...??

Hi Judy, My pain is on both sides but not always in the same joint of each side. It started in my right middle finger then went to the left foot, then to the right knee, then both hips, then on to both arms and then it hurt to breathe. The initial flare just took over my whole body. Now, it's right wrist, the base of both thumbs, and my hips that are bothering me as far as pain. When I get up, I'm so stiff and I stand for a minute before I walk, it feels like my ankles are going to break if I try to take off walking without standing for a minute. The pain moves around but the larger joints seem to follow a more symmetrical pattern than the smaller ones like in the fingers/toes. Cassie

I realize most of us have these sausage like fingers and toes. They hurt worse while they are swollen and getting all crooked up. The swelling went down in my fingers and toes after they crooked then the pain was less. Now, I have 3 little toes on the left foot that are going numb off and on. Does this happen to you with PA or do you think it may be something else? Cassie

Another strange question from a "new member". If I were to describe
my PA it would be like this: Psoriasis (mild) on scalp, knees,
elbows and base of back. Arthritis (medium) currently in 8-9 joints
all over my body. However- here is my question. Is it possible
that the psoriasis can effect your tendons and/or muscles under the
skin? For years,I think this has been the case with me. Went to the
doc the other day because of my shoulder really hurting. My upper
back muscles were so stiff but he said it is probabally because I'm
off of MTX for now. Also, I seem to get more pain in my
muscles/tendons than my joints. Any ideas or help would be
appreciated!
Mike

HI ALL
I just got diagnosed with psoriosis and psoratic arthritis at the age
of 23. Im a female who has been experiencing aches and pains for a
while in my wrist and some fingers and in my back. I type all day at
my job and just overlooked it as part of my job.
I am on methotrexate, prednisone, and folic acid. I am scared of all
these stories of liver damage and so forth. I dont know if I want to
be on methotrexate very long. Is there anything anyone knows of that
is a natural way to fight off this disease and all these aches and
pains. I have the most pains in my lower back, inner thighs, feet,
and hands.
IM new to all this..id appreciate any responses
THANKS
Lina

Hi Cathy
At the moment I am occupied with "Non Fiction", and it will merely touch on
PA.
After that, well I suppose a PA book is in the offering, but that will not
be for a few years yet. Part of the reason, I have no ending? Perhaps a cure
might be in sight and what an ending that would be.
Love and God Bless
Gillian
The whole imposing edifice of modern medicine is like the celebrated tower
of Pisa- slightly off balance.

My sister gets sunpoison every few years. It looks just like zits or
excema. But she only gets it after being in the hot summer sun for 6-
8 HOURS!
Diane in Texas

Subject: Re: Nightshades? Inquiring minds want to know more.......
Nightshades = potatos, tomatos, eggplant, peppers.
I believe that carbohydrates are thought to increase the acidity levels of
your blood ph, and the goal is to get it to be more alkaline. That is one
theory, anyway.
-April
******************
Hi;
Tobacco and paprika are also nightshades.
Yes, carbs do increase blood acidity and there are many foods to help bring it
back to alkaline, mainly veggies and fruits. Even acid fruits like oranges
and grapefruit turn alkaline in the system. Isn't it interesting when one
disects the typical diet - breakfast (usually consists of one or more...)
toast, butter/jam, eggs, pancakes, bacon, milk = all acid. For lunch and
dinner - sandwitches, hamburgers, french fries or any kind of potato, all
condiments, colas, pasta, desserts of all kinds, beef, chicken, fish, cheese =
all acid. I've read on many occasions that the ideal ratio is 80% alkaline,
20% acid. Even eating healthy, too much brown rice/salmon/nuts, etc. can be
a bad thing. I've said it before and I'll say it again, my pain is 100% gone
after eliminating all the 'bad acid foods' and replaced them with more
alkaline and 'good acid foods,' along with plenty (about a gallon) of
distilled water a day.
G'nite!
Guy

Hi to all! I live in North Carolina and we have very hot humid weather now and I can tell you humidity does bother me. The pain/stiffness is worse when we have a weather change like before it rains or if it is cold/snowing/raining. I can't tell which is worse hot or cold. I just take some Darvocet when I can't take it anymore.

Hi wierd question but does anyone ever get small
nodule looking things on their toes? They are little
round hard surfaces on the middle joint. It is under
the skin? Any idea what it is?
Judy

Hi Sharon
help much<
Personally I have not seen anyone making a spectacle of oneself on the Oprah
Show. Last week they showed how people use mobile telephones while driving.
Invited Parents lost there three year old daughter in a car accident, only
to find out the other driver was answering a call on his mobile, did not see
the STOP sign. They also covered leaving children to 'bake' in hot cars,
leaving children unattended for a few minutes to come back and find the car
reversed into a tree. We might all agree that this is common sense, as one
member of the audience said, "When I leave my car to go to the Bank, I take
my handbag, but leave the kids?" Food for thought. If you think that
enlightening other people into common sense is making a spectacle of
oneself, that is fine. However personally I do not.
If we manage to get PA PUBLICISED on the Oprah Show, even if I make a
complete fool of myself, for me it does not matter. The aim is to heighten
awareness, which in turn will make all our lives easier.
In my experience and I refer to the late Dennis Potter, his "Singing
Detective" took England by storm, due to so called 'sex scenes'. That was
the hype, millions switched on and million learned about PA! That one play
did more for PA, than any publicity given out by the medical profession or
Psoriatic Organisations.
We all belong to a e-mail group called Onelist, because we all have PA or
have a relative with PA. Yet when it comes to getting this condition
Publicised, or even e-mailing Hillary Clinton, half crawl back into their
shells. In my book 400 members have a voice, 44 million Americans have a
voice, however we prefer to moan and groan then to get up and DO something.
Love and God Bless
Gillian
The whole imposing edifice of modern medicine is like the celebrated tower
of Pisa- slightly off balance.

Hi Louise, Linda and Sharon
The system in Ireland and England are the same.
As soon as you start working you pay TAX! You pay a personal Tax. This is
calculated on the Gross wage, if you are married, if you have children and
if you have a mortgage. Therefore if you are earning $100 dollars per week,
you pay LESS in personal tax than someone in different circumstances earning
$600 dollars per week. We have 'tax bands' and everyone will fall into one
of those specific categories.
You are also given a child allowance, payable once per month from the State
for children. The more you have, the more you receive. Married people have a
married allowance, while single people do not. And you are allowed to claim
tax exception on mortgage for buying a house, although I think they have
stopped this in England. Now on top of that personal tax, you pay National
Insurance or PRSI in Ireland. Here that is 9% of your Gross earnings. After
those statutory deductions, you get your cash, Net Wage.
Now that 9% contribution by you and a 12% contribution from the Company you
work for, pay for your health care. [These are Irish Figures] Your
entitlements then, Disability Payment if you become disabled, Unemployment
if you loose your job, State Retirement Pension upon reaching the age. You
are also covered for as many visits to the Physician you need, Consultant
visits as you need, X-rays, Blood Tests, MRI, CAT, surgical and anytime you
spend in hospital. Now if you are going to be ill for a long period, due to
say an operation or chronic health, you can also apply for sickness benefit,
again payable weekly from the State.
YES you have contributed financially to this system, via your NI or PRSI
contributions. In England you make a small payment for your prescription.
Last time I was there I paid fifty dollars which covered me for the year on
my prescription charges.
Obviously the % of NI or PRSI is calculated on the amount of people in the
Country who are working. Most times the Personal Tax is used to pay for the
upkeep of hospitals, but that is set aside in the budgets.
Now while this system does have faults, the positive side, everyone receives
treatment, no matter what there circumstances. Everyone can receive
unemployment, disability, retirement pension and so on.
You can if you so wish also contribute to a Private Health Plan on top of
the NI, PRSI. However NI or PRSI contributions are statutory unless you are
self employed then you are on your own.
Now you will not be at the hands of Private Medical Insurance, where the FDA
state you cannot have this treatment, or that drug because you only have PA
and not RA. You are able to see your Rheumatologist as often as you want, or
he calls you. You can also go for a second opinion. So far I have never been
told that I am not covered by my health insurance because I have PA and not
RA. The people in charge of the system here or your health are the Doctors
and not the Medical Insurance Companies. If I need to see my Rheumatologist
I see my Rheumatologist, even if I just saw him three days ago!
Again tests are not done for the fun of it. I cannot go in and DEMAND a MRI
scan. If my Rheumatologist thinks he needs a MRI scan he will order one. If
he thinks it is a waste of time and money, you do not get one.
However I have no 'real complaints' about my treatment to date. Yes I have
endured problems, but only because my Rheumatologist jumped to conclusions.
No health insurance can insure against that.
To my understanding this system is the one that Hillary Clinton wanted to
introduce to America, after studying it here in Ireland and England, while
Husband was visiting.
Yes Hillary will, well I think she has already left the White House. However
I thought she was running for the Senate????? Should she get in, this
medical system is her baby and I do not think she is going to let it go that
easily. Of course there is opposition. With no Private Health Companies,
what will the staff employed by them do? What happens to the FDA? The
Pharmaceutical Companies will not be allowed to charge a high profitable
price for there drugs!
Doctors in charge of the Health System, rather than Insurance Companies
dictating to the Health System.
There is a very big difference in that.
Love and God Bless
Gillian
The whole imposing edifice of modern medicine is like the celebrated tower
of Pisa- slightly off balance.

I would be interested to hear whether people experience flare-ups when the weather is very humid. I developed psoriatic arthritis after moving from a dry climate to a very humid one. Could it be that there is a connection? Margot

A well-known speaker started off his seminar by holding up a $20 bill.
In the room of 200, he asked, "Who would like this $20 bill?" Hands
started going up. He said, "I am going to give this $20 to one of you
but first let me do this.
"He proceeded to crumple the twenty dollar bill up. He then asked,
"Who still wants it?" Still the hands were up in the air. "Well," he
replied,"What if I do this?"
And he dropped it on the ground and started to grind it into the floor
with his shoe. He picked it up, now all crumpled and dirty.
"Now who still wants it?" Still the hands went into the air.
"My friends, you have all learned a very valuable lesson. No matter
what I did to the money, you still wanted it because it did not
decrease in value.
It was still worth $20.
Many times in our lives, we are dropped, crumpled,and ground into the
dirt by the decisions we make and the circumstances that come our
way. We feel as though we are worthless.
But no matter what has happened or what will happen, you will never
lose your value. You are special -
Don't ever forget it!
"Never let yesterday's disappointments overshadow tomorrow's dreams"
I thought this is pretty relevant to the way many of us feel on our
bad days. Hope it helps! Christie

Dear All,
Just a thought about eveyone's comments re the effects of sun, I have
recently moved from the UK to France and now get a lot more sun and my new
dermo here advised me to go into the sun, yes it takes guts and courage to
do it and my skin is so much better now and with that comes the confidence
and thus I go to the beach more often!My dermo explained the risks involved
but for me I am prepared to take those risks to feel and be better.I was
once told that a lot of people who have P suffer from a syndrome called
SAD-basically lack of sun/light-and it has been proved that people become
more depressed with the lack of sunlight, hence the high suicide rates in
the Nordic/scandinavian countries.Even changing your light bulbs in the
house to special bulbs is an improvement. If anyone has any thoughts on this
please let me know.
Further to that I must plead with you all who take MTX, if you feel
ill,depressed or other side effects there are alternativev treatments and
please discuss these with your specialist. Here in France they are very anti
MTX and my dermo changed my medciation and I fell 100% better and I do not
have to have the monthly blood tests. I know that I am talking only for P
sufferers but please there are alternatives to MTX.
My daughter aged 2 has excema and I hear all of the comments when we are on
the beach, oh poor family..what a shame for the child.etc but I now ignore
them and in the evening my daughter and I examine our skin and apply the
creams at the same time!
Someone posted a website re scratching but i deleted it, can some let me
know the address.
Take care
David

Hi All,
Just wanted to vent my feelings today - Just having a little pity
party for Patty. I'm not sure I even want company, ha!!
I just came back from the hospital yesterday where I learned from the
Nephrologist that my 88 year old mother has 10% kidney function. We
go back next Friday for a kidney scan and more blood tests. I know
that her kidney function has been going down hill the last three
years (I saw the lab results) and this is the first time I have been
told anything. Two years ago her Creatnine showed she was operating
at 65%; last year at 35% and now 10%. Do you suppose I have a right
to have known that so I wouldn't have given her the new Celebrex drug
which just made things worse????
It just hit me this morning that I had better do all I can to not get
stressed and have a flare and then I won't be able to handle Mother's
problems. All of you send good thoughts my way here in Northwestern
Missouri where the corn grows tall!
Thanks for listening!
Granny Patty/Missouri

Psoriasis Research Round-Up July/August 1998 [NPF]
Psoriasis Research Roundup
July/August 1998
Note: This article contains excerpts from the July/August 1998 NPF
Bulletin. This Bulletin column is devoted to keeping NPF members up to date
about basic and clinical research, new treatment techniques and medications.
Steroid/salicylic acid combo gets shelved
The anticipated launch of a new prescription topical medication for plaque
psoriasis has been indefinitely delayed. The U.S. Food and Drug Administration
(FDA) requested that Schering Corp. conduct additional safety tests in order for
the product, a combination of a topical steroid and salicylic acid, to get FDA
approval. Schering disagreed with the need for the tests, according to a
spokeswoman, and the two side are at an impasse. This new product is "shelved
indefinitely," she said, and may never be launched.
Schering has already conducted clinical studies of the product, which
combined Elocon (mometasone furoate, a potent prescription topical steroid) and
5% salicylic acid (a scale lifter used in many psoriasis products). The results
had been promising (see the November/December 1997 Research Roundup). The
attempt to combine these two active ingredients stemmed from previous published
reports that salicylic acid, in concentrations as low as 2%, increased the
penetration of various topical steroids.
Despite the setback, Schering remains committed to dermatology products
and helping psoriasis patients throught its prescription topical steroids,
Elocon and Diprolene (betamethasone dipropionate), according to the spokeswoman.
Chinese herbs and steroids
A paper presented at the annual meeting of the British Association of
Dermatology shed some light on the mysterious Chinese herbal medicines that some
patients with skin diseases swear by. Researchers at King's College Hospital in
London analyzed 10 creams prescribed by Chinese herbalists as herbal,
steroid-free remedies for either eczema or "scaly scalp." Seven of the
preparations were being used by children and three by adults
Relatively high levels of dexamethasone, a low-potency corticosteroid,
were found in seven of the 10 creams. The researchers recommended greater legal
restrictions on Chinese herbal preparations.
An update on psoriasis and hormones
As we talked about in the May/June issue of the BULLETIN, the effect of
pregnancy on psoriasis is unpredictable. It's clear, however, from the letters
and phone calls we get that many women perceive some interaction between their
psoriasis and hormonal changes in their bodies, such as pregnancy and menopause.
Scientists have conducted a few studies of psoriasis and pregancy, but the
effect of other hormonal changes is mostly uncharted territory. Dermatologists
at the University of Pennsylvania conducted a survey of almost 250 female
psoriasis patients in an attempt to find some answers. The results were printed
in the May 1998 issue of Cutis magazine.
a.. Pregnancy: patients reported that their psoriasis got better in 35
percent of pregnancies; 18 percent got worse and 46 percent had no change.
b.. Menopause: 48 percent of the patients who had psoriasis during
menopause said their skin worsened, 50 percent said no change and 2 percent
reported improvement.
c.. Menstruation: the overwhelming majority (80 percent) said there was
no change in their psoriasis during their menstrual cycles; in 16 percent it got
worse and in 4 percent it was better.
d.. Oral contraceptives: 68 percent saw no change, and equal proportions
of the remainder reported improvement and worsening of their psoriasis.
e.. Infertility therapy: only a small number of surveyed patients were
taking infertility drugs, so the results are not very reliable; however, two of
eight patients on the drugs reported an improvement in psoriasis, and they said
their skin got worse again once they stopped infertility treatments.
The Pennsylvania researchers conclude that "major hormonal shifts
[pregnancy and menopause] appear to have some effect on psoriasis," with lesser
or temporary changes such as menstrual cycles or birth control making less of an
impact. This survey supports the anecdotal evidence that the NPF and
dermatologists have heard for years, but scientists are still uncertain as to
why hormones make a difference in psoriasis. There are many theories yet no
definitive answers.
All of the studies of psoriasis and hormones have been retrospective,
meaning they are based on patients' recollections of what happened to their skin
at certain times, like when they were pregnant. Prospective studies, ones that
monitor and examine the changes as they occur in patients, would be valuable in
further unlocking this mystery.

I got a letter from the national psoriasis foundation talking about if I
wanted to participate in a new study.....I never heard of this medication
before.....Its called - Anti-CD11a (monoclonal antibody) anybody try or hear
about this stuff yet?? thanks......

Louise wrote in about the latest issue of Arthritis Today
Magazine and I have to say that this magazine has been wonderful.
I discovered it in my doctors office and then did not send the
order form in for ages. So glad I finally did as every issue has
had some worthwhile information. I highly recommend it to this
list.
Also the NPF puts out a newletter and they have had several
articles (including an article about this list group) concerning
PA. This last one had a two page spread on various utensils to
help make life easier for those with PA.
I tried chiropractic and it made my pain level much worse. I
have been to both the Palmer Method and the "Bone Crushing"
chiropractors and neither helped one bit.....just made me feel
much, much worse.
Dieting! I tried the Atkins Diet about 8 months ago (looking for
a quick fix) and gained weight. Had a pity party and then, I
remember that Robert wrote an article about lifestyle changes and
out eating habits. Well, he was 100% correct and I joined Weight
Watchers and have lost 29 lbs. in less than five months. My endo
told me that loosing weight was beyond hard when you have thyroid
disease (as I do) but the WW program has worked wonders. It is
easy, cheap and good for you. Lots of veggies, I drink water now
and never did that before, never ate much fruit and now I make a
point of it...etc. It is the smartest thing I have ever done for
myself.
Now starting Tai Chi for excercise and rethinking that decision.
I am very sore and had leg cramps the other night from all the
different stretches. Will keep with it, but hope it gets less
painful! Anyone else out there tried Tai Chi? I had already
signed up for the classes when Arthritis Today Magazine came out
and had a long article about how beneficial Tai Was for arthritis
sufferers. So that did reinforce my willingness to try it.
Still wish Jack would answer my question about how the diagnosis
of PA changed his disability diagnosis, etc. Please Email me
privately Jack...I really would like some more information about
this process.
Linda
Poulsbo, WA.

OK Can someone please clue me in about Nightshades. I've read some of
the postings but is there a list of what to avoid somewhere? Also,it
sounds like I need to eat more fruit. What about carbohydrates?
Does a high carb count promote joint stiffness? Any comments or
suggestions would be helpfull!

Hi Sharon
Well I live in Europe, not America, but I have already mentioned Politics.
To my knowledge it is estimated that some 44 million Americans have
arthritis. Now that is some Political Clout if one could get them all
together. While I know none of you like Hillary Clinton, she did try to
instigate some form of free medical assistance program. Being as she seems
to be interested in this subject, I am surprised that no one has appraised
her of the situation.
I have also been harassing Oprah, in hope that perhaps she too might take up
this subject, but so far zero. I doubt Oprah would be that interested in a
European mentioning PA, but Americans????
Food for thought I hope?
Love and God Bless
Gillian
The whole imposing edifice of modern medicine is like the celebrated tower
of Pisa- slightly off balance.

Hi Louise
A few weeks ago our next door neighbour asked is she could borrow the lawn
mower. They are renting the house next door, are TWO Doctors at the local
Hospital. My lawn mower is petrol driven, powerful enough to mow one acre of
grass, so I told her that I would cut HER lawn, which I did.
After that we got chatting about each other and I explained that "I have
Arthritis that is connected to my skin condition, Psoriasis". Yep it worked,
as she said to me, "You should not be performing this tough job!" I replied,
"On the contrary, exercise is good for my condition!"
People associate Arthritis with either rheumatoid version or old age
version, because that is all they know about. By stating it is connected to
my 'skin condition', well they really listen, as it is something NEW! The
only draw back so far, anyone gets a pimple or rash, they automatically
assume they have Arthritis.
Love and God Bless
Gillian
The whole imposing edifice of modern medicine is like the celebrated tower
of Pisa- slightly off balance.

I tried the MSM but it did nothing for me. I must admit tho that I
am pretty drug resistant. Very few things give me much relief.
Novocaine and Lidocaine are useless. Codeine and morphine will take
the edge off. I need to take large doses for longer periods of time
with antibiotics. The MTX doesn't seem to be working either (10
mg/week). I will see rheumy on the 24th and will back him into the
corner (so he can't get out of the room) and talk to him about what's
going on. Actually he is pretty good about answering all my
questions and taking time with me.
Diane
Toasty in Texas (it is 103F today!)

Remicade is an infusion done in the doc's office, you don't have to
try and hit a vein on your own. The procedure takes about two to
three hours and is done on schedule of about every eight weeks.
Unlike Enbrel it is not essential to take MTX with Remicade.

Hi everyone, I'm back from the beach. It was a nice vacation. Only got a little pink. The sun is just too hot for me now. The hotel had a very nice spa, I really enjoyed that and wish I had one at home. I'll have to give hubby some strong hints. It seems that the MTX makes it where I can't stand as much heat but if I had stayed out for very long at the time I would definitely be a crispy critter in only a few minutes. I have always loved being outside and used to get a good tan and could be outside forever without any problems. How long can others in this group be out without problems? Rheumy says the sun is good for the P. Now, I have to wait until the evening to work in the yard, or go to the pond to fish or do anything I like that envolves the outdoors. I think the little pinkness will be fine. I didn't get enough sun that it bothers me as far as a sunburn. Sorry to hear there were so many people depressed while I was gone. O.K. everyone give a big smile,
and say a prayer for the ones that are troubled, depressed, in pain, or otherwise experiencing some type of misery. GOD will listen. Groups help by number. No one has to go through this alone. Now, smile and talk, just let it off your mind or aching bones. Cassie

Donna, thanks for asking about my poor leg. It's really strange. It's been
almost 3 weeks, now The bruise ended up covering most of my leg below the
knee, front and back. It is still swelling daily, and hurts in a couple of
places. I had a Doc look at it and he said to put moist heat on it to break up
the bruise. I used a wet cloth and a heating pad. I can't believe how quickly
the bruise went away. It actually left before the swelling on my knee did. I
still have questions about it, but it is a surface pain not in the bone. I'm
going to give it another week and see how it does. Thanks for asking, Becky

Hi Everyone, Thanks for taking the time to read my
story. My problem started over 10 yrs ago when I went
to the Dr because my hair was falling out. She did an
ANA test and it came back slightly positive.She didnt
even refer me to a General (she was a
Dermatologist)because she said it was so slightly
elevated and to not worry. I Worried because a
Neighbor of mine had died a few yrs backf rom Lupus.
She did however say my Hairloss was because my Thyroid
was way out of wack. 4 yrs later after my second child
was born I started having foot problems. After many
Drs I was diagnosed with PA. I had some pitting in my
left thumb and a little fungus on one of my toes. I
was relieved to have a Diagnosis,However throughout
the times the dr's still did the ANA test and it came
back the same. Rheumatoid Factor was negative. Every
Dr said I didnt have Lupus and the other tests they
ran helped them make that conclusion plus my elevation
was so low. I am a worry wart and not a day goes by
that I dont worry about this. My arthritis has since
gone to my knee, hip, elbow and my inner groin area.
This is all on my right side only.My left side a few
of my fingers have it as does the side of my ankle. It
has been over 10 yrs since I have taken the test and
now the Dr says maybe it is some type of mixed
connective tissue disease.
He wants me to re take the Lupus test this time take a
anti-ana test and the rheumatoid again. I am very
afraid to take these tests. I go into a severe panic
attack.
It seems that Lupus and RA both have symmetrical
systems and PA typically doesnt. I still have the
pitting and fungus. (I forgot to mention I have had
psoraisis of the scalp since I was 12, mild but
constant)
I am controlling my pain with 2 Motrins a day but hate
taking the meds.
What do you all think? Thanks for reading my saga
Judy

Hi Becky
Yes but as they are now starting to realise, the winds of change are
blowing, but they are being left behind! Seems the support for the Portadown
Orangemen is now dwindling, due to violence!
Love and God Bless
Gillian
The whole imposing edifice of modern medicine is like the celebrated tower
of Pisa- slightly off balance.

Hi patty,

Are you on gold therapy? One of the side effects that they watch for is protein in the urine,. it can show an infection or a problem with the kidneys. That's why its so important to have the urines and blkoods checked regularly. I have had protein once or twice. They decrease my gold for that week and do a repeat urine. I've never had it in two or more weeks in a row,. Have only had to have half the gold doe once.

Angela

the problem IS!<<<
Doesn't have to do with the Battle of the Boyne, fought by the Orange guy
against his son in law in the 1600's?
Today's paper has a picture of a small child standing at attention in front of a
bonfire. I guess that is how something like this hangs on for 500 years. They
learn it young and have it reinforced for their whole life. Becky

Personally, I think the nightshade doctor was on drugs himself!!

Janie

Hi Margaretha
Yes again excellent point.
Ireland was always an agricultural land, in years gone by all was undertaken
by hand. Ploughing with horses, digging with a shovel, hay making with a
scythe and milking the cows by hand. The stable diet, boiled bacon and
cabbage with potatoes. Take it from me, boiled bacon is 100% fat. In fact
they would slice the fat and place it between two slices of bread. However
they then went out into the fields and worked the fat off. My Cousins are
dairy farmers and meal time, well a full leg of lamb, potatoes, three
assorted vegetables, plus bread and butter would vanish in less than five
minutes. I took a leg of lamb on my last visit and my Cousin also cooked
half a cow, the table was clean and then they ate cake.
I then went out to help the thin sons pick the potatoes. I gave up after
five minutes, the back was killing me, but they had three days of this back
breaking work ahead of them.
Meal times for me, a time to taste the delicacy and chat. For them it is
just a fuel stop!
The Irish diet has changed. Pizza, McDonalds, fast foods and TV dinners. No
wonder then that Ireland now has the highest European rate for cancer of the
bowel! Believe it or not, the medics are now trying to restore the boiled
bacon and cabbage, traditional Irish meal.
In the winter I hardly every eat salad, because Mom needs her meat and three
vegetables. However I have the arthritis and she some 30 years my elder,
does not!
Love and God Bless
Gillian
The whole imposing edifice of modern medicine is like the celebrated tower
of Pisa- slightly off balance.

Hello all,
Thank you, Patricia, for looking up the shady part of
the veggies.
I can partly agree with Dr. Childers' statements
insofar as adapting the diet to the climate you live
in.
It's obvious that on my subtropical little island I
don't need the amounts of calories and animal fats I
would take if I were living in the north of Sweden or
Alaska. But to blame polio (a virus) or loss of sexual
vitality (if the Spaniards, who live in Eastern Spain
and eat n.s. veggies daily, would hear this they would
get impotent by laughing), goes a bit far. In the
Scandinavian countries these vegetables are quite
expensive (except for potatoes), so they are not too
frequently eaten, and they suffer from arthritis the
same as anyone else.
This leads me to my next question; has anybody left
out all the nightshades for a reasonable long time and
has it improved the PA?
Greetings.
Margaretha.
Tu correo gratis en MixMail http://www.mixmail.com
Inicia tu navegacion en http://www.ya.com

Donna,
I agree on the parsnips. Nasty. My husband did some work for a
neighbor (originally from Duluth - same food) and wouldn't take any
money. So she make him a nice pot of vegetable soup. Right.
Parsnips, potatoes, turnips. No spices.
When I think of food in Michigan, I think of bakeries. With all of
the Swedes, Norwegians, etc., there are great bakeries all over.
That is the one thing I really miss down here in Houston. No Swedish
bakery. I've even tried calling the Swedish Embassy to see if they
knew of one - but they don't seem to ever answer their phone! Half
of the bakeries here in town don't even have bread - just cookies and
cakes. Weird. I would kill for a cardamon coffee cake. I'll just
have to settle for jalapeno cheese bread.
Diane in Texas

I know about capsaicin, but it still remains that they are a member of the
nightshade family and proscribed by my MD as well as in the book "Healing
Psoriasis: The Natural Alternative" by John O.A. Pagano.
-April

Yes, the capaisin (sp?)in peppers is supposed to be good for pain
relief and they is full of Vitamins A and C. But the pain reliever
only works topically - on the skin - not internally. It is a counter
irritant.
By the way, there is a scale for how "hot" a pepper is. A bell
pepper is zero. A jalapeno is 5,000. A habenero/havenero is
300,000! The habenero is an innocent looking small round yellow
pepper. If you accidentally ingest a pepper that is too hot for you,
DO NOT DRINK WATER! It only spreads the heat. Eat starchy stuff or
sweet stuff. Ice cream is very effective. Of course, most people
don't have ice cream sitting around when they are eating peppers but
they usually have crackers or tortilla chips.

I started four days ago on MTX.
Day One - Slept all day, literally all day
Day Two - Felt Fine
Day Three - Felt Fine
Day Four - Feel like Dog S**t
Headachy
Heartburn
Sore
Throat hurts
Runny Nose
Fatigue
Emotional Basketcase
Is this normal?
Thanks.
Kelly W.

In a message dated 07/10/00 6:36:12 PM Eastern Daylight Time,
PsoriaticArthritis@egroups.com writes:
<< As for my own personal problem at the moment - Rheumy said last visit that
I
had protein in my urine. I can't seem to find anything on this in my PDR so
anyone have any ideas?
Pregnant women who have high blood pressure spill protein in their urine.
Could it be that you might have high blood pressure?
Patty

One more thought. You mean we have to stick with the foods from
our "native" area? We should never eat anything that comes from a
different climate. How boring. No Mexican food, no Chinese, no
Italian, no Scandanavian goodies, no nothing? No one could ever try
any new foods. How was the world ever populated? How was America
ever settled. Or any other country? Are you sure of the date on
that article? Wasn't it 1777 or 1877 not 1977?
Diane in Texas (and formerly Chicago)

Good heavens! If we Texans had to give up peppers (jalapenos,
habeneros, poblanos, etc.), we might as well not eat! Remember, the
hotter the climate, the hotter the food.
Diane in Texas

Hi Helen
Yep I failed the urine test as well! It was when my White Cell Count went
above 21% and they decided to perform a Bone Marrow in case of Leukaemia. I
guess my poor old kidneys could not cope with such a HIGH white cell count,
were overloaded so opted to filter nothing. It all passed straight out of
the system. Glad to report that it was just a BLIP, all be it a BIG blip.
Love and God Bless
Gillian
The whole imposing edifice of modern medicine is like the celebrated tower
of Pisa- slightly off balance.

Copied this after doing a search at www.ask.com:
It is important when eating for optimal health to base your diet on
foods from your own climate, or one that is similar to yours.
Therefore, if you live in the temperate zones, eating tropical fruits
and vegetables results in imbalance.
The regular consumption of tomatoes, potatoes, eggplants, and other
solanaceous plants that originated in South America or other tropical
regions of the world is believed to be a contributing factor in the
loss of natural immunity in temperate climates and may lead to a wide
range of sicknesses ranging from colds and flu to skin rashes and
itches, loss of sexual vitality, polio, and others. Dr. Norman
Childers, a professor of horticulture at Cook College in New Jersey
who has worked with solanaceous plants all his life, reported that
regular consumption of tomatoes, potatoes, and eggplants is a primary
cause of arthritis. He noted that in arthritic patients symptoms of
this potentially crippling disease go away usually in a period of
several weeks to several months when they stop eating these foods.
Source: Norman Childers, The Nightshades and Health, N.J.:
Horticulture Publications, 1977.

Hi Margaretha and all
Well now you got me thinking! If I recall and please correct me if I am
wrong. The late Dennis Potter, who suffered from PA, wrote a play called
"The Singing Detective". Now I recall something about the main character
being in hospital and being given tomatoes in his salad. He made some
comment or other and I assume this is where the myth originated.
Odd because I have, curtsy of my sister-in-law in England, a video of Dennis
Potter's last interview for television, six weeks before he died. I must dig
it out and view it again. Dennis wanted/needed to give this interview, so
chose the interviewer and location. It was Melvin Bragg at Channel Four
Studios at 8am! The reason for such an early start, Dennis was dying from
liver cancer and 8am was his good hour. During the interview he drank a
cocktail of the finest Champagne and liquid Morphine. If he had to stomach
the morphine, why not mix it with Champagne. His Psoriasis was still very
visible, even though he had spent many years on MTX. Anyway during the
interview he mentions not being able to mix 'Steak' with 'Red Wine'. Part of
the reason he never went to America, because he enjoyed BOTH, but had to
limit his intake of BOTH! Mind you he always smoked sixty to one hundred
cigarettes per day, odd he did not die from Lung Cancer. He also stated that
at night when the arthritic pain was too unbearable, he always had whiskey
and hot milk, which for him was better than any drugs he was given.
I assume because Dennis was a high profile controversial author, he was the
guinea pig for MTX. He also really highlighted PA in "The Singing
Detective", shame he died young.
Anyway that is my memory of Tomatoes and PA.
Love and God Bless
Gillian
The whole imposing edifice of modern medicine is like the celebrated tower
of Pisa- slightly off balance.

I haven't had any side effects from the MTX (10 mg/week)- but then I
haven't seen any difference in the P or the PA either.
I am taking 7 mg Predisone per day. I've tried to go lower but it
hurts too much to walk even with a cane. My rheumy would like to see
me off of it entirely but I told him I would continue taking it until
we found something that helped decrease the pain.

I tried MTX before Enbrel -- and I still take both!
The MTX was fine and I think has done a lot for me,
but not enough. So the rheumy has me on both drugs,
plus Ultram and Celebrex. I don't see much in the way
of side effects w/ the MTX, but I take it
sub-cutaneously, so I don't have stomach problems I
did when I took it orally.
hope this helps --
Robert, North Jersey Highlands

Hi Janie--for what it's worth....
I had a burn that would not heal. I faithfully used the antibiotic
cream, cortisone, you name it. It looked worse and worse. I started
to wonder if it was a strange fungus or something. It turns out that
I was having an allergic reaction to the antibiotic cream! My doctor
recognized it because she had just seen it the month before. I was
using a "triple antibiotic" cream and apparently developed a reaction
even though I had used it many times in the past. I quit putting
ANYTHING on it and it started to heal. Now I am selective about when
to use any ointment and if I do I stick with the ones that are a
single antibiotic which is less likely to be a problem. Might help
you, too! La
Thought from LaRita
"If you believe everything you read, better not read"
Japanese Proverb

Hello! I'm new to this group. A quick intro...
My name's Christie, I'm American, 27 years old, and have had PA for
about 7 years now. My question is about meds....
I'm wondering if anyone out there has been prescribed steroids to go
with their MTX?
My specialist in the States never mentioned anything about
steroids, we only combined MTX with folic acid to counterbalance it
and NSAIDs or other pain killers as needed...
However, I'm living in Taiwan now and have just restarted MTX with
my latest flare up. The specialist here has put me on Predisone
(sp?), which he says is a steroid, along with the MTX and folic acid
and other meds. He said it will help to balance the effects of the
MTX. I've seen lots of doctors and specialists and done lots of
reading, but this was new to me.
I was really hesitant because I am afraid to put on any weight and
put more pressure on my already strained joints, but my family doctor
said it's a low dose (5 mg per day) and that you can take 1 mg per
kilo of your weight and that she thought it should help with both the
pain and to counteract the MTX's effect to my immune system. She
didn't think it shoud cause me to gain any weight.
Does anyone have any experience with this or advice? I'd appreciate
your thoughts.
Christie

I have been out of commission recently and am behind in commenting on some of the recent discussions. The new combination of MTX, Vioxx and Arava is got me back to the point of spending the majority of the week in bed! Can't wait to see the rheumy again at the end of the month.

I would like to caution any of you trying these diets, especially the blood type one. Be sure to read the whole book and know your complete blood type. I am A neg. What the book recommends for A type blood and for RH neg type is almost completely opposite. So that left me very glad I had just read an library book and not spent any money on it. Also there has been lots of hype about tomatoes being bad for arthritis for many years.

Even though they are plentiful, tasty, very nutritious and my personal favorite, I stayed away from them (very difficult) for 6 months. Did not, not, help in any way. Always be careful about eliminating foods from your diet unless they cause you a specific allergic reaction or upset stomach. Please eat a healthy balanced diet. That is one small easy thing we can do for ourselves. Lord knows with all the meds we take we need all the natural nutrients we can get.

Also, with all the meds I take for PA and other problems I did have to add prevacid to my routine. I couldn't take prilosec. My problem is not being sick to my stomach, but feeling like I have an ulcer, like an animal is gnawing its way out [Erythomiacian (spelling?) also affects me the same way] . So do both Prilosec and Prevacid cause cancer? I never heard this before and it greatly concerns me because both my mother's and father's families have all kinds of cancers.

Finally, I developed a site reaction to a bandaid I was using on one of the small sunburn areas. It will not go away, no matter what I use, is very painful and is growing ( it looks like the sunburns did). I have used Lidex, antibacterials,& cortizone. The sunburns cleared up nicely within a week or 10 days. The abrasion on my knee that the doc thought was turning into P is finally healing. But this area won't. I guess I will need to call the dermatologist tomorrow, since it has been about a month. Have any of you had problems like this? Am I going to need to wear a bubble to make sure nothing even scratches my skin?

As always, thanks for being there. We are all lucky to have found each other.

Janie

I don't now have diabetes but did have gestational diabetes 9 and 10 years
ago with pregnancies, and I know I'm at risk for getting Type II (which my
dad, his mom, and her mom all had). I've had the PA for 21 years and am 41
now. It will be interesting to see what others say on this. (I have a bunch
of auto-immune stuff wrong with me and suspect it's all related.)
Mary Pope-Handy
Los Gatos, CA

My husband has just been diagnosed with Hepatitis C. Does anyone
know of a group similar to ours for that??? I know they couldn't
possibly be as knowledgeable, nice, helpful :-)

My unmedical, unprofessional thought on the different skin cells
between the palms, soles of feet and the rest of the body is that you
don't have hair cells on your palms, soles of your feet. The skin
appears different to look at - thinner - probably to enhance your
sense of touch.
On many of the sites for arthritis I have noticed that they group the
psoriatic arthritis with the spondylitis group. My husband has
moderately severe spondylitis (several types) and was diagnosed with
type 2 diabetes a year ago. Connection or coincidence I don't know.

Hi Patty,
I'm very interested in what you are doing. It is very personal to me. i have
2 children aged 8 and 10 and I have wanted another one ( always thought I'd
have four, but will settle for 3) for yrs. I develpoed the PA after the
birth of both children. It got really bad, then got a bit better. We tried
for a baby a few yrs back, before I got really bad and had to go on all
these drugs. I long for that other pregnancy and child. i'm 33. I, like you
said, feel I will regret not trying again if I don't. But, I am so
uncertain.. these are the meds I take, so you'll see why it scares me. Keep
in mind, that these meds don't seem to do much..
plaquenil,arthrotec,elavil,metho,gold,codeine
contin,tylenol#3,didrocal,folic acid. Wow.. wouldn't it be hard to stop them
all. But, I have another obstacle..I am currently recieving LTD and applying
process for CPP. One of the requirements of getting these ( which I NEED) is
that I must follow the recommended treatment. I don't beleive this would
include going off all drugs to get pregnant. I fell that maybe I wouldn't be
any worse off without the drugs ythan I am now.. but how to know? I keep
thinking that I may get better, get off them and have another. To be totally
honest, if I wasn't receiving LTD I would probably stop them all and give it
a try.. such a disappointment to me.. no more kids.. I wish you the best of
luck and my advise to you is DO IT!! Especially if your able to stop the
drugs cause you never know when it will get really bad and you will need
meds. That's what happened to me.
Angela

Ok - i'm not sure i'm doing this right, but i'm trying to post on the egroup
or however this works. I'm so happy to find this site - I cried with
happiness from finding it that FINALLY!!! SOMEONE WHO CAN UNDERSTAND HOW I
FEEL!! and I cried with empathy for some of the posting because i'm at the
same place and feel your pain. Anyhow I guess this is sort of my
experimental posting - let's see if it works

Hi All
Well all this socialising and guess what I go down with? Correct
Pharyngitis.
My Physician examined my throat and ears, then prescribed me Amoxycillin. I
have just looked Pharyngitis up in my book and one of the several causes
'Oral Sex'. See I knew I was going somewhere while I was asleep, just hoped
I enjoyed it because I am now 'paying' for it!
Love and God Bless
Gillian
The whole imposing edifice of modern medicine is like the celebrated tower
of Pisa- slightly off balance.

I too have good days/bad days and have wondered this since being
diagnosed. How can you have something so painful somedays and be able
to jog later. I am glad thru this list I have learned that I am not the
only one. Lately my days have been wonderful, then when I get ready to
go to bed...my back starts hurting, it is like it is reminding me that I
do still have this so ha ha. Then when it really wants to be rude..I
have a flare where I never catch a break .... where the pain is for 24
hrs....
The psoriasis never goes away completely though. Always a new patch to
look forward to. I also wanted to share about the rx creams. Do you
ever take a break from them and then go back to them later...sometimes
they work much better. The derm told me to do this because the steriod
creams thins the skin so much it sometimes makes it wors