my last pap came back - abnormal glandular cells. after the biopsy it
only showed "cervititis"...something like that. so they told me not to
worry and repeat in three months. she said it is not related to
dysplasia..wasn't quite sure why it was there. said they are normally
cells in the uterus not the cervix.....I guess the whole body is falling
apart at 34......Jayne
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I wanted to mention to everyone that I have been using magnets on and
off for about 2 years to diminish my joint pain. For me they work
great! I've got one to tape on my upper back at the base of my neck
and it sends a "coolness" over my upper back and eliminates the
stiffness.
I've got 2 more (with higher strength) to tape on my shoulder, wrist
or toes and they go a great job also. Finally, I've got a really
crooked pinky finger on my left hand from the PA and I tape some
small "neo-magnets" on them and presto! the stiffness goes away.
Just wanted to see if anyone else has had success with magnets. And
if so, what brand are they and where do you buy them? Looking for
replys! Thanks
Mike
Hi, it's Cassie. Thanks for the replies. Bill, how well and how long did it
take for the Colchichine to work? Patty B, your hand surgery sounds a little
like for carpal tunnel. Was it for that or a joint? I also have trouble with
the right middle finger, I can't touch it to the palm as well as the other
fingers. I had injections at the base of it also and it almost touches the palm
now but feels like something pulling tight across the top of the finger when I
try to bend it, but I have a large knuckle now, atleast it is'nt swollen like a
big sausage and sticking out like I'm giving the finger to everyone. You said
you wanted to watch the surgery when yours was done. I watched the surgery on
my foot a few years ago and I think it hurt more just because I was watching and
my foot was open from the ankle to the base of the little toe. O.K. Ken it's
your turn. What is an EMG I'm not sure what you are talking about. I'm sure
it's a test but not familiar with it. And yes to I think we all tolerate more
pain than others because we live with it everyday. Others without chronic pain
don't know and don't possibly think we could be in as much pain as we say we are
on the really bad days. Hi Patricia, I've been through the braces to and can't
do a thing with them on. Did you figure a way to write with one on. It hurts
just to lay my hand on the table to write something because it is angled just
enough to sit on the area that hurts the worst. Bye for now, Cassie
Have you gotten the thick pens made by Pilot called "Dr. Grip"? They help. Pat B
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Visualization techniques have been used for centuries for a variety of reasons. Ridding the body of disease is only one.
Our minds are very powerful and literally control our bodies, so it stands to reason that re-programming our minds will help in any situation. However, it takes lots of quiet time and serious concentration on a consistent basis for however long it may take. It is easy to "slip back" and old thought patterns can take over. Then its necessary to re-program again.
One of the most profound books I ever read is The Power of your Subconscious Mind by Dr Joseph Murphy (Prentice Hall). It was originally written in 1963, but I read it in the 80's. I have bought it for friends in crisis on several occasions.
While it is a little spiritual, it is not a religious book, so if any of you are religion-phobes, don't get turned off. It is about the mind.
Hi Janie
I really enjoyed your e-mail and agree one hundred percent.
When I refer to lifestyle changes, this re-programming is what I mean. Once
upon a time I could not say "NO". If it was my siblings, parents, friends,
or boss requests, No was not in my vocabulary. Then I ended up doing a full
days work, plus work for the family or friends. If PA has taught me
anything, it have taught me that I need time for me. However I had to find
me first, because I never had the time to sort out who Gillian was? An
employee, friend, sister, Aunt, daughter, Godmother, decorator, gardener,
cook, laundry maid, housemaid, organiser, and car mechanic. However that was
not me! Those were roles!
Jobs had to be done, so they were done, not that I had enough hours in the
day. And if I did not have enough hours then, how could I hope to find me?
One thing you have with PA, a lot of 'time'. I could not hope to take on
jobs from the past and give them my undivided attention. Now I have the
time, I hope I have used it wisely to find out who I am!
The subconscious is an extremely powerful weapon. It enjoys as you correctly
state, 'slip back' or circles. If you allow it to run in circles, well in my
opinion you never really achieve anything, let alone learn by past mistakes.
We jump, judge and assume, all because our subconscious feels this is the
right attitude. It feels safe and protected. Breaking that circle is
probably the hardest thing I have achieved in my life. Yet when I am
unaware, I still find myself slipping back!
A blood test will come back more abnormal than usual and I 'automatically
assume' the worst possible scenario! Panic ensues until I realise what is
going on. Then I stop, apply some logic and change thought patterns.
Unusually abnormal does not always mean BAD. It could actually mean GOOD,
depending on what the original baseline was!
Likewise a new pain and I automatically assume the arthritis is spreading!
This pain usually has a very rational explanation, if I just retrace my
steps for the previous twenty four hours.
New symptoms appear like a bowel problem and my mind automatically refers to
the Evening Primrose Oil, while ignoring the bar of chocolate I devoured
while watching a late night film.
I think my motto is, think and never jump to conclusions or assumptions. So
far I have survived two years and six month without being hospitalised for
PA symptoms. Prior to this lifestyle change I was admitted twice a year on a
regular basis.
Yes the key for control of my PA is my subconscious. It is for ever placing
irrational hurdles in my path. "I am off to walk to the nearest shop, with
Hermes, because that is as far as I know I can make it!" Three miles later
and I think "Got you! You tried to trick me but did not get away with it!"
However if I thought, "Right three miles here we come", my subconscious
would start placing doubts in my mind. "Cannot walk that far, because the
knee will seize, the back would rebel and I will be in bed all day
tomorrow!"
These are but excuses, validated by the subconscious, because you are quote
'ILL'. That is why I never use the word, DISEASE, but CONDITION.
Love and God Bless
Gillian
A friend is, as it were, a second self.
Hi, I am a tea lover and really like Green Tea. This
tea is suppose to be good for you in so many ways.
Does anyone have any experiece with Flare ups with
Green Tea, Good or Bad? Does any other Tea help in
your opinion?
Judy
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Hi New Jersey,
I can certainly relate to the frustration that you feel. I am a 54 year old grandmother, but there is no age limit on the feeling of helplessness that PA causes. I also feel like throwing things sometimes, but around my house, I'm the one who would have to clean up the mess and it hurts too much to bend over and pick up the pieces. You've taken the first step by venting your feelings here. We all understand. Good luck on your Embrel trial. I hope it works for you. I wish there was one in my area. There are still lots of things that I want to do again, also.
Allayne
em
Hi Louise
Well it worked for me!
Back in 1993 while on four weeks bed rest, during my worst spell to date, I
read about this.
However with me I decided to pick the most grotesque animal I hate and still
hate, the Rat!
Laying in bed in sever pain, I pictured this big black rat, sat on my bed,
gnawing at my knee. That was the only way to describe the pain. I then
decided that I had to do something about it! I visualised the next stage,
climbing out of bed, walking the hall, out the front door and into the
garage. As I opened the garage door, there stood my 'stainless steel
shovel'. I picked it up, brought it back and battered the rat to oblivion.
Exhausted by my trip, I then fell off to sleep!
I find this interesting, because I do not own a 'stainless steel shovel'
Just the thought of dragging this body out of bed, was at the time
exhausting, never mind walking to the garage. However I did get to sleep?
A few nights later this was followed by the Saw, and I amputated my own arm.
Odd because once I had sawed my way through my shoulder joint, the pain
vanished and again I fell to sleep. [Perhaps amputating my shoulder joint
without anaesthetic was more painful than the arthritis?]
In hindsight, I was on many pain killers, but in the subconscious, I think
my conscious had accepted that I had murdered the Rat that was causing this
pain, and amputated the shoulder.
Should I ever find myself in the same situation, I would not hesitate to
used this useful tool again. Although I no longer own a Saw.
Some people visualise the beach and gentle waves, others a sunset, but I
know this would not work for me.
Love and God Bless
Gillian
A friend is, as it were, a second self.
Your symptoms are mine exactly except that my swelling takes a lil longer to
return........and it wasnt till 2 weeks ago while camping with the Cub Scouts
and my son.......that I have had my sneakers off long enough to know that my
feet swelled this bad..........normally I would get out of bed.....feeling
stiff......and skin on feet feeling tight.......but yet i could still get
them into sneaks????!!!.....anyway it rained the whole trip and eventually i
had to leave my shoes off and they swelled so bad that i couldnt stuff em
in!!.....I had toxemia with both my pregnancies and my feet swelled so bad
that they weeped water from every pore and were so tight i couldnt stand on
them very long be4 they numbed up..........but now the swelling does go back
up my leg with sneaks on........takes longer with just elevation so i usually
dont take my sneaks off....cept to sleep.......absolutely no water pill
helps......as a matter of fact all my concerned friends said "Oh you should
never eat chinese food then......but to the contrary......my swelling is
always better after a good egg roll......lol........anyway......Peace and
thanks for posting Tracy.......if I learn anything I'll pass it
on....;-).....<3, Terri
Hi gang,
I heard yesterday from a good friend about two people she knows (one a
friend, and one a neighbor so it's not like reading it in the National
Enquirer or anything :-) who had so much cancer the doctors could do no
more. One of those people did have chemo, then spent a couple months at
some clinic in Idaho learning to do visualization. The other just
learned to do imagery on his own, taught by his wife who knew how to do
it. They did this very, very consistently and today neither person has
any evidence of cancer.
My thinking is -- you know where this is going -- if it could work on
something as bad as cancer, what effect might it have on a degenerative
disease like arthritis?
Just a rhetorical question to kick off this week!!
--Louise
Hi Mike
I had/had this same problem. Only it was both my shoulders. I was eventually
diagnosed with Fibromyalgia! The Rheumatologist asked me how I slept? The
answer, "I go to bed am out for the count, an earthquake could not wake me.
However when I wake in the morning, I feel as if I have not slept at all?"
Fibromyalgia has to do with the 'sleep pattern'. Normally when we got to
sleep the eyes are completely rested for a few hours, during the phase of
'deep sleep'. Thereafter the eyes move about randomly and the sleep is much
lighter. The first phase is called non-random eye movement, or non-REM and
the second phase REM sleep. Experiments have been performed on healthy
people, not allowing them to sleep deeply. By recording the electrical
activity of the brain it is possible to know when they are falling into a
deep sleep and stimulate then, probably with a cattle pod, to sleep
superficially. When they wake up in the mornings they are aching and stiff
and display all the symptoms of Fibro.
Now some will argue with this explanation. Me, well when I resided in
England, I always dreamed about living in Ireland. Since I have been living
in Ireland, 'a wish fulfilment if you like' I no longer dream! Just goes to
prove the old saying, be careful what you wish/dream for!
Yes they can offer a drug amitriptyline, but I have not taken this course
yet. Instead I have a weekly massage, which helps.
Perhaps you might also have this condition on top of PA like myself? they
can diagnose it by physical examination of what they term trigger points.
You have certain tender point in your body and if the medic touches them,
mark my word you will jump!
A word of warning. Massage provides temporary relief, but the deep massage
which is sometimes given and which some Physiotherapists believe is breaking
down the nodules' may bruise the muscles. The what happens is you return the
following day for another massage and the story goes on. I see a Beautician
who is qualified in Swedish Massage which is a real godsend.
Hi Cassie
You might wish to watch out for Raynauds Phenomenon. This is a
spasm/contractor of the blood vessels to the extremities. The fingers/toes
will have a blue tinge in either hot weather or cold weather.
I have this and today took my sox off for the first time in 12 months. Phew!
No I do change them regularly but always wear sox. My feet are white, almost
cream with lovely highways of veins running along them. However get to the
junction of foot toes and you would swear all those junctions were bruised.
the old type bruise, black rather than blue. Now if I turn and sit with my
feet in this lovely cool draft, tis hot here today, temperature hit 25
degrees, my toes will react just like traffic lights. Blue within seconds.
As for numbness, well I try to ignore everything below the neck these days
and lets be honest, my toes might well be in America for all I can feel.
Love and God Bless
Gillian
The whole imposing edifice of modern medicine is like the celebrated tower
of Pisa- slightly off balance.
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Hello Judy,
What your gp says makes perfect sense. Because you
switched tennis (hence your tennis elbow) to hammert
hrowing (an ancient British sport), you dropped the
hammer on your toe and while retrieving the hammer
you hurt your hip and got a hernia.
Your swollen pinky is probably because you stuck up
the wrong finger while saying goodbye.
A change of diet may not cure arthritis but it sure
can help a lot.
Glucosamine seems to have helped some people but
should not be taken when your immuno system is
depressed, like with MXT.
Keep smiling.
Margaretha.
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Tracy...it is like labor pain in your thighs...a constant ache like a
bad bad bad toothache. Put the worst menstrual cramps in your
thighs.... yeah that is good....
Jayne
Hi All
I have only written five chapters to date, was waiting for the ending which
occurred on July 10th.
Sounds like that song, "Everyday I write the Book!"
Love and God Bless
Gillian
The whole imposing edifice of modern medicine is like the celebrated tower
of Pisa- slightly off balance.
Something happend July 10th? What, a full moon? Pat B
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I'm 56 and i've been doing Tai-Chi for about 6 mths now and find it really
beneficial, it really loosens up my stiff joints, a retired Chinese martial
artist teaches it at our local Bhuddist temple, for free, he just says to just
drop a coin in the temple donation box, when entering.
John from Queensland Australia
==============================
Message: 4
Date: Mon, 17 Jul 2000 10:12:33 -0700 (PDT)
From: Kelly Watson <kelly94114@...
Subject: Re: Tai Chi
I've done Tai Chi in the past. I found it beneficial
because it got me moving when I was in a flare. Tai
Chi is also good because you can listen to your body
and decide how far to move or stretch. Some people
(show-offs) bend there knees practically to the ground
but we can't and it's alright, we're still getting the
benefit of the exercise.
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My thanks to everyone for making me feel welcome. The words of advice
and encouragement are extremely helpful. Michele, I sure would like
to visit with you a bit more about the issues that come with
pregnancy. I have an appointment with the OBGYN in a couple of
weeks. My guess is that we will take a hard look at my current meds
and figure out what my alternatives are.
This has been a rough year on the P side. I can't remember how many
times I have been asked " Whats all over you, Poison Ivy?" I admit
to saying yes once or twice when someone thought I had been in a
motorcycle accident. This is my worst year ever in that area. I was
never self concious about my skin, smaller patches you know, now that
they cover larger areas, my resolve has broken. Add to that the
limping until noon at work everyday, they may all think I am a
hypocondriac(sp?) Whomever wrote about people Glossing Over the word
Arthritis was right. People seem to think you can just take
something and the pain will go away immediately. I'm not sure about
regular arthritis but this PA, I have tried 3 meds recently and am
not totally happy with any of them. Maybe the next one will be the
winner!
I feel like I have too little experience to offer many opinions yet
but I look forward to gleening lots of knowledge from all of you.
Thanks for making me feel welcome!
Sarendra
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Hello Gillian,
I say, did you copy this explication of the working of
monoclonal antibodies or is it your own text?
This is understandable for the most simpleminded
(including myself).
You should get a job in publications of medical
articles for lay people, christianizing the texts.
How often you don't find in a magazine or newspaper
some of these articles and for most normal people they
are practically in Greek (ancient).
Greetings.
Margaretha.
etc.
Tu correo gratis en MixMail http://www.mixmail.com
Inicia tu navegacion en http://www.ya.com
Hi Chris
Yes you certainly have a unique sense of humour!
and I'll spend the rest
of my life being fed pizza crusts and cheese doodles and having to listen to
punk music all the time and they'll dress me funny. My daughter-in-law
waxed my toes (!) last week and painted my toenails metallic green. It's
not a pretty sight.<
One word Hitchcock! The first part conjures up scenes from Psycho. Mom being
sat in chair of house window overlooking the Motel!
The toe nails, well it could be worse. After I broke my leg here on holiday,
they painted mine Green White and Gold, the Irish Flag and wrote "Up the
IRA" over my plaster cast. MI5 were not impressed, even thought I had Semtex
explosives hidden inside the cast! Aunt Pidgies home made soda bread I could
agree with, but explosives?????? Come on it was my leg, I would need it, why
blow it up?????
Ah yes the revival in Punk Music. My nephew purchased, "Never mine the
B*****ks Its the Sex Pistols" CD while here on holiday. He got a shock when
I produced the old fashioned original plastic album!
I think he thought he invented PUNK, did not realise my generation invented
it! Suffice to say, he has gone off PUNK now, perhaps because his Aunt knows
about Punk, so it must be OLD!
Love and God Bless
Gillian
The whole imposing edifice of modern medicine is like the celebrated tower
of Pisa- slightly off balance.
Hi to everyone! I opened a big can of worms with the topic "working vs. disability". I guess to clarify disabled, I meant anyone who collects disability benefits instead of working on a public job, but I know some of you are disabled and don't collect any benefits. Let me explain- I'm curious because I was only diagnosed a little less than a year and a half ago. I'm a nurse (LPN), and have done this work for 18 yrs. When diagnosed with PA I was just about to graduate and take the stateboard exam to become a (RN). PA ruined that opportunity for me only one month before graduation so I couldn't finish the class. Now, I can't work plus go back to school it's too much to handle at one time. I work 12 hr shifts every weekend I work 2:30 til 11:00 pm on Friday's and on Sat. and Sun. I work 6:30pm til 7:00am., that's 32 hrs. to get paid for 40 hrs. This shift gives me the most money because of shift differential pay. I make more money than my husband and I have all of our
health insurance through my employer. I have one son at home that is just starting the 9th grade. I take MTX orally 15mg per week, Vioxx, Folic Acid, Synthroid for the Hypothyroidism, Prinivil due to high bloodpressure since on meds for PA and I also have kidney stones. I have extreme fatigue after working the way I do. I am having some memory problems especially forgetful of names, difficulty explaining what I want to say during a conversation. I guess that comes with this disease. I never knew about PA before I was diagnosed. This is not something they teach us in school. They always talked about Osteo or RA when they discussed arthritis. I really found out the hard way about other forms of arthritis. One of you mentioned EPO. What is EPO? I'm not familiar with it. I work in pediatrics with physically/mentally retarded babies to young adults. It's not easy especially with all the tube fed clients 21out of 37 are tube fed and I'm having trouble with my hands
(may need surgery on my dominant right hand). I've also been working as the only nurse in the building for the past 5 months due to a nursing shortage. I probably sound bad at this point because I'm tired, sleepy, and in some pain to. Forgot to mention the occasional Darvocet that I was living on. I need one now. GUESS IT WAS MY TURN TO COMPLAIN. Sorry to have taken so much space on here. Going to sleep now. Look forward to another chat, and hope you didn't mind me talking too much or feeling sorry for myself at the present time. HAVE A GREAT DAY!!! Oh! I do have some good helpers at work but they can't do alot of the duties I have. I'll be glad when they hire more nurses. Cassie
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Hi I am new to the group and not sure if this email is
ok our not. I in know means want to break the rules
and I am sorry if I am doing this. Please let me know.
My husband and I have been in the HealthCare Field for
over 10 yrs and awhile back he produced 3 video's.
They are for people who have had 1)Total Hip
Replacement 2)Total Knee Replacements and the other is
for Neck/Back Pain. These videos were geared to people
who have run out of insurance or cant get to the
Physical Therapists. They are true PT Lessons done by
a PT of PT lessons. After reading some of these posts
I thought that it might benefit some of you. We
normally charge $29.95 but I would be willing to offer
them to the group for $5.95 plus $4.25 S/H. Please
email me if you are interested in learning more.
Again, I am new to the list and another victim of PA.
I only offered the above after reading some posts and
thought I could help.
Thanks Everyone
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My mother and several of her retired teacher friends take Tai Chi, and love it. It is offered through our local Community Collage and they all take both semesters of it. Sometimes she gets tired, but would never admit it. They are all in their 60's and it seems to be very good for them. Becky
I currently work 12 hour shifts and am interested in knowing how many members of the PA group are disabled. Right now, I'm doing O.K. but the initial flare a year ago put me on my butt for months. At times, I think I can't go on working then I get better. I know I would not be able to do the kind of work I do on any regular basis if I have another flare like that one. I'm on my feet and walk alot. When I started back to work people were wondering why they hired me back because I had such a hard time walking, now I work circles around some of them (only because they are lazy), they don't have any physical limitations and when I have a bad day they don't want to help me out with any of my work. They think I should give up and quit work. What do you think on matters like this?
Hi Tadel630@...
I love it after I type a e-mail address and it displays it in blue.
Yes Vitamin E has been known to give beneficial relief to arthritis pain. It
is an anti-oxidant, slows the ageing process and maintains 'certain
enzymes'. It protects the lungs and tissues from damage caused by pollutants
and so on.
At this point I wish we had a biochemist at Onelist. The reason? Well are
bodies are finely tuned instruments. They need a daily intake of vitamins
and minerals in order to operate to peak performance. When we start to cut
certain foods from our diets and introduce other foods, we must always
insist that we have the correct 'balanced' approach. I take evening primrose
oil, Gamolenic Acid, which also contains Vitamin E. As to if my diet/body
is unable to manufacture this Gamolenic acid, I do not know, but this
supplement works for me. I also take a Vitamin Pill, because I cannot eat
oranges or drink orange juice. Orange is too acidic and triggers my
arthritis. Therefore I hope to gain my Vitamin C from my daily pill.
Certain drugs can strip the body of its nutrients, so even if you are
overloading the system with a Vitamin, while taking the drug that strips the
body of this nutrient, well you are void of this nutrient.
I look at this as a chain reaction. If you have one small part missing, you
are misfiring. If your car engine misfires, well you take it to the garage
to be re-tuned. If your body misfires, you are ill.
Finding the correct tuning is a long process, likewise if you take too much
vitamin E, well you will succumb to various side effects.
A balanced approach for me is the only way.
Love and God Bless
Gillian
The whole imposing edifice of modern medicine is like the celebrated tower
of Pisa- slightly off balance.
Yes I have read something about this.
I will check my book and let you know what they say about Vitamin E!
Love and God Bless
Gillian
The whole imposing edifice of modern medicine is like the celebrated tower
of Pisa- slightly off balance.
Hi Serendra
Welcome to Onelist, or perhaps "Been their, Done that, Will not repeat it"
Group.
I do not have any children by choice, did not wish to pass this condition on
and that was just the Psoriasis. However I am or was the Chief diaper
changer for five assorted nephews and nieces. I got all the good jobs. The
girls were fine, but the boys worried me. One false move and they would have
been sterile for life! The only problem I had with diapers, the cream. You
know like you wash the butts, then put cream on the butts, then wrap the
diaper around them. Well the new disposable diapers have sticky closures,
except if your hands are covered in cream. Then they refuse to stick.
Sellotape is very useful! Now I am no expert on children, but from my
experience they 'bond' with Mummy! For example, one refused to go to sleep
in my arms, until my sister-in-law walked in the room and told him to 'shut
up', which he did, much to my surprise. He was four weeks old! Moms voice
was obviously the soothing blanket that he needed. I probably felt wrong to
him.
Likewise children grow up accepting their parents. If Mummy and Daddy sit at
the dinning room table for every meal, child will follow. If parents sit on
the couch eating TV dinners, child will follow. If child knows Mummy cannot
do certain things, child will accept.
I recall being at my sister home one afternoon, when the youngest got up on
the chair. He must have been three? My sister was in the kitchen, I was sat
the closest, yet when he fell, my sister got their first and caught him. It
was like an automatic reaction for her, while I saw it all in replay mode.
Whatever this Mother instinct is, in my opinion it is extremely strong. Most
parents can out guess the child, while I miss the problem completely.
Yes you have to 'get your head in the game', or around problems that may or
maynot arise. PA comes with no real hard and fast rules, no one can tell you
if the condition will deteriorate in five minutes, let alone five years.
According to the experts here, I should have started MTX in January 1994. I
refused and now some SIX YEARS later I am still not showing any
deterioration.
You know your body. You know what you want out of life, now you just have to
decided if you are going to allow PA to stand in the way!
Love and God Bless
Gillian
The whole imposing edifice of modern medicine is like the celebrated tower
of Pisa- slightly off balance.
Hi Everyone,
FYI this is a news report about a gene that maybe related to joint inflammation in
both humans and mice. Sincerely, Bill in DC
https://.bluehewwwalth.org/bin/build_page.pl
Wow I am not even sure where to start. I just finished reading my first days worth of posting and I am crying a river. I am 31, married, P for 10 years, PA for 1.5 years and Gosh darn it, I have been depressed!!!!
Its so incredible to hear that there are others out there experiencing the same things. I have been feeling pretty alone, only because I wasn't using the brain god gave me to seek out others to share with. I had to be reminded about the INTERNET, please do not ask what I do for a living, its internet related!
Back to the details, I would like to start a family but am scared about the P and the PA without medicine while I work on that. Also can't help but worry about being able to handle all that comes with kids. I know that you can never be prepared for all the things that change, but if I can't open a pop can, can I change a diaper? My PA just took a turn for the worse. My hubby is very supportive but is as unsure about what to do as I am about what to tell him.
I just got a new Ruemy, she is great, gave me several things to try. The Derm is also better that the last 3. Seems to have a clue about P where the others were pretty vague. I have finally decided that I am the master of my destiny for this thing and am trying to get my head in the game.
Which brings me to THANK YOU. Today really helped. I am very thankful for a group that's "Been there, Done that!"
Sarendra
Hi Patricia
Congratulations on raising an excellent subject.
Here in Tralee the youth congregate around Denny Street and rumours have it
they are dealing drugs. We have also had cases where prescribed drugs are
being sold on to Drug Dealers. Not too sure what they do with them, I assume
mix them in with illegal drugs?
Thankfully I carry no drugs around town, never have, except when I have
travelled. Imagine my surprise on my last visit to England. Down on the car
deck of the ship, a van displaying Co-Proxmal drugs in full view. Now these
are pain killers and give me a sense of floating. I certainly would not
drive under the influence, yet I assume this driver was! In the old days
when all travellers had to pass MI5 [CIA] security clearance, in case you
were a terrorist, I often wondered what would happen if they located my
arthritic drugs? Obviously they look for Drug Traffickers, so how would I
explain my assortment?
I did take my drugs to America, in my hand luggage, just in case the
Security Dog got wind of my Co-Proxmal and caused problems. Thankfully no
one bothered with these drugs, they were more concerned over Henry? He was
x-rayed several times and eventually went through some MRI scan in Chicago
Airport? By the time we came into land at Vegas, Henry was The Strip!
Love and God Bless
Gillian
The whole imposing edifice of modern medicine is like the celebrated tower
of Pisa- slightly off balance.
Well, I just saw my Rheumy today & he reviewed my X-rays & confirmed my suspitions that four of my fingers are now "bone on bone". I am currently only taking vitamins & EPO, with pain meds at bedtime & he feels that I need to do something more aggresive. He has suggested Remicade. Has anyone else tried this or know anything about it? I am so leary of the "heavy hitters" but also not too thrilled that my joints are getting worse. I also talked to a woman the other day who was bed ridden with RA over 25 years ago who started taking Chloraphil & swears it has saved her life. She wants me to try it. My doctor said give it a try that it wouldn't hurt. Has anyone heard of this? I am scheduled to go to a teaching hospital in 1 month (was scheduled to go this month but they cancelled it) so before I start the heavy stuff I'll see what they say. There was a lot of postings on depression the last few days, I guess a lot of us were feeling in the same boat. I have been
pretty blue too and was blessed by all the postings & humor. I know that I can be thankful for what I DO have and not focus on this. And that there is always someone who is SO much worse off than I am, but sometimes the pain just gnaws a hole in my spirit.
Take care,
Debbie
Just had an interesting safety classes day yesterday with the drug
inforcement officers giving talks. Seems you can't even carry one
pill around without the original container with your info on it or
else at least the receipt with your name and the drug name or you can
end up in jail. Whew! One pill? You can be jailed for one Darvocet!
What would they say about a handful of something stronger? I told
them they can't expect people to carry around the entire amount. It's
not good to carry around in the heat for one thing. They did suggest
getting another bottle from the pharmacy with the info on it or else
a statement from the doctor. Makes you think. With routine stops of
cars and looking at liscenses and insurance the next thing you know
it might be a trip to jail. Try keeping your arthritis under control
from jail and getting your meds?!? What a horrid thought.
They had displays of drug paraphenalia and some drugs. The deputy was
standing right there when I said it was wierd that the Demoral baggie
had white pills since mine were dark purple and pink capsules (had
them once when sick). Now I should have asked about currnet
prescriptions. How many of us take as needed our meds? That means the
pill bottle might show the date from months before and the math says
the pills should have been gone months before and we still have them?
Wonder if I should get a statement from the doctor and get it
laminated to carry in my pocket?
Take care,
Pat B
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Hi All
Well just took my last antibiotic. The infection was severe, worst I have
ever endured. It had me flat in bed all day Saturday and I had a nose bleed
this morning from all the blowing. My left ear cleared its blockage to my
right ear, now it has gone back, so as to if I have cure the infection, time
will tell.
I now have the waiting phase, see if the PA is triggered!
Love and God Bless
Gillian
The whole imposing edifice of modern medicine is like the celebrated tower
of Pisa- slightly off balance.
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Hello Gillian and all,
This is exactly what I did years ago and I can tell
you it took a long time to find out the perfect diet
for my self.
Still from time to time I come upon something new. The
other day someone gave a a pot of lovely chutney which
I am very fond of and eat regularly, but this time the
next day I had a bad reaction. I found out that this
chutney contained ginger, something I never eat so I
had to add something else to my prohibited list.
Could somebody please tell me what is so bad about
night shade vegetables? We eat stacks of them every
day because they are very healthy and very tasty and
they never did me any harm.
I would like to endorse Janie's message about being
cautious with fad diets and to eat BALANCED meals.
Again, the only good diet is the one you feel well by
and can keep the rest of your life.
Greetings.
Margaretha.
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Hi Janie
I EAT tomatoes, although as you state they are supposed to be bad for the
arthritis. However and I stress this, I have one tomato once a week in with
my salad. In my twenties, well my favourite supper was plum tomatoes on
toast and I did eat this dish on a regular basis. Now though I have no
craving for this dish whatsoever! I also notice how I enjoy different
varieties of tomatoes. The local Irish ones are very thick skinned and
bitter. The small petite ones from the Canary Islands are sweet and now we
are even getting the Italian plum tomatoes here. One week I will have the
small Canary Island ones then the following week the Italian Plum ones.
If anyone is thinking about restricting food because of PA, than in my
opinion you have to start a health log. Every night you note down what you
ate, what drugs you took and how you feel. Then you eliminate a food,
perhaps orange juice and note down that night what you feel. Only by doing
this for several weeks will any real pattern appear. It is long, boring, but
it worked for me. Now I can eat my trigger foods, as long as they are days
apart. If I ate all my trigger foods in one day, well I would be in BIG
trouble.
Yes I read most of the books published about Diet and Arthritis. Trouble
was, one book contradicted the other and so on. For me the only way, to
treat it as a Scientific Test, which I did. My food restrictions do not
appear in any arthritis book, but much to my own surprise, they are the same
foods as the Allergist located.
Love and God Bless
Gillian
The whole imposing edifice of modern medicine is like the celebrated tower
of Pisa- slightly off balance.
Hello Arjay,
This is my personal experience but I know other people
have noticed the same.
I don't know why Dovonex does not work on the hand
palms and foot soles but I rember reading somewhere
that the skin cells there are somhow different from
those on other parts of the body.
What might work is a steroid cream (which I think you
use) but even if it does the trick the P practically
always comes back worse and it leaves the skin very
thin if used often thus leaving the hands (and feet)
even more prone to outward or inward damage.
I also hate gloves but when my palms are only slighty
affected I do use them for work in the garden and I am
extremely careful with paints, glue or turpentine (I
am making a doll's house and need the feel of my
fingers for such small work) but I use surgical gloves.
I am very lucky the be "clean" since nearly half a
year now, after more than four years not having been
able to wear normal shoes (sometimes not even to walk
without a cane) because of the raw state of my feet.
My hands only got real bad occasionally. I was given a
fito medicine (on dr's prescription) when I was 90%
covered with P, and it started clearing after a week
and a month later the P had gone.
I cannot say if it was the medicine or natural
remission but you can understand how happy I am to be
able to walk again and wear nice shoes (WITH inlays)
and stockings and of course most of my knee and hip
troubles also have gone.
Of course I am not cured and as soon as I see a tiny
spot somewhere that might be P I put on some Dovonex
for two days and it disappears. I think yesterday I
put some on a mosquito bite but better safe then sorry.
My hands and feet I treat like the crown jewels. Every
time my hands have been in contact with water I cream
them and every night I "sand paper" and cream my feet.
One last thing, I found out that soaking the feet is
not good (at least for mine). Better a quick wash or
use baby-cleaning-tissues and then cream and socks.
If somebody knows about that difference in skin cells
I would be interested to hear from them.
Greetings,
Margaretha.
Tu correo gratis en MixMail http://www.mixmail.com
Inicia tu navegacion en http://www.ya.com
Well, I'm due for my 9th shot of Enbrel tonight and I just wanted to send
an update to the list. So far exactly zero side effects, not even redness
at the injection site.
I've experienced a near 100% resolution to the PA pain. I've gone from
terrible pain in the chest, upper back, and foot to the very occasional
twinge first thing in the morning. I've stopped needing what was
previously 1100mg/day naproxen sodium. I also put in 75 miles on my
bicycle last week. This stuff is a miracle if it doesn't turn out to have
some long term nasty side effects.
It doesn't do anything for my P though. The only help for the P is very
localized. I've noticed that if I inject beneath a lesion, it clears it or
improves it greatly.
One question though: I've seen hints of Enbrel and weight gain, so what's
this all about? I'm still losing weight on my low carb way of eating so I
know I don't have that problem, but is that one of the reported side
effects? Did I see somewhere that Enbrel can cause carbohydrate cravings?
--Jay Vercellotti
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Hi All
Michael Warr just sent me this and asked me to pass it on, so I am!
January 13 2000
Genesis Receives FDA Clearance to
Start Phase II Psoriasis Clinical Trials
Milestone for New Zealands biotechnology industry
New Zealand biotechnology company Genesis Research & Development today
announced that its psoriasis vaccine, PVAC, had passed a major milestone.
Genesis, together with its development partner Corixa Corporation (NASDAQ:
CRXA),
a US vaccine-based biotechnology company, has received clearance from the US
Food and Drug Administration (FDA) to initiate Phase II clinical trials to
further study
PVAC treatment of patients with moderate to severe psoriasis.
Psoriasis affects up to 100 million people worldwide. PVAC, a derivative of
Mycobacterium vaccae (M. vaccae), is an immunomodulatory product for
treatment of
psoriasis. It will be produced for the US IND (Investigational New Drug
application)
studies at Corixas facility in Hamilton, Montana. Genesis and Corixa will
conduct
three random, placebo-controlled studies in the United States, Brazil and
the
Philippines
"This is an extremely important milestone, both for Genesis as a company,
and in the
development of PVAC as a novel therapeutic for managing psoriasis," says Dr
Jim
Watson, Chief Executive of Genesis. "Whats exciting for Genesis is that we
have now
taken PVAC, a discovery we made ourselves and developed in collaboration
with
Corixa, over a considerable hurdle in the worlds most stringent regulatory
process."
Getting approval to begin Phase II trials represents the culmination of five
years
laboratory and clinical work and six months of regulatory processes. The
trials
proposed in the IND provide an excellent opportunity to continue to examine
the safety
and efficacy of the Genesis PVAC vaccine for patients suffering from this
pervasive
dermatological disorder. We anticipate that it may take up to two more years
to
complete this stage and be ready for Phase III. Only after the successful
completion of
the Phase III trials can the vaccine be launched as a product.
To undertake this process with a discovery that we made ourselves is
unusual often
companies purchase the original intellectual property that they take through
the testing
cycle. The success to date of our partnership with Corixa demonstrates the
commercial potential of Genesis discovery and partnership-based approach to
building
and retaining a portfolio of intellectual property."
Impact and treatment of psoriasis
Psoriasis is characterised by chronic inflammatory lesions with red, scaling
plaques,
and is believed to be caused by immune attacks from the bodys own T-cells.
The
disease affects an estimated one to three percent of the worlds population.
There are
approximately five million people in the US with psoriasis, with an
estimated 30
percent having a moderate to severe form of the disease.
Preliminary data from a pilot Phase I trial performed in the Philippines
were used in
Genesis and Corixas IND application. Approximately 20 moderate to severe
psoriatic
patients were treated in this Phase I study. More than half of the patients
treated
demonstrated greater than a 75 percent decrease in disease severity. Many
patients
showed complete and durable responses lasting for longer than the six months
of
observation following administration.
In August 1999, Genesis announced that Japanese pharmaceutical company
Zenyaku
Kogyo has agreed to purchase limited rights to PVAC, for multi-year license,
research
and development in Japan. Genesis and Corixa retain exclusive rights for the
rest of
the world. Zenyaku Kogyo was the first party outside of the development
partners to
make a commitment to PVAC on the strength of its commercial potential.
About Genesis
Genesis Research and Development Corporation Limited is a discovery-based
biotechnology company. Genesis has built a technology platform to identify
new
molecules that regulate the distribution of information during cell to cell
communication
common to all life systems, from humans to plants and micro-organisms.
Commercial
application of this technology extends the full range of life science
industries, including
health, forestry, agriculture and horticulture. The companys business
strategy, based
on partnerships with biopharmaceutical, agricultural and forestry companies
developing
and marketing the products arising from the discovery programmes, has
allowed
Genesis to develop significant intellectual property. Genesis is based in
Auckland,
New Zealand and has been operating since 1994.
About Corixa
Corixa is a research and development-based biotechnology company committed
to
treating and preventing diseases by understanding and directing the immune
system.
Corixa applies its expertise in immunology and its proprietary technology
platforms to
the discovery and development of vaccine and other antigen-based products.
The
company partners with innovative developers and marketers of pharmaceuticals
and
diagnostic products to make its products available to patients around the
world. Corixa
was founded in 1994 and is headquartered in Seattle, Washington, with
additional
operations in Hamilton, Montana and Redwood City, California.
ENDS
Photographs are available on {HYPERLINK "contact.asp"}request.
More information from:
Dr J.D. Watson,
Chief Executive,
Genesis Research and Development Corporation Limited
+64 9 373 5600,
{HYPERLINK "mailto:j.watson@..."}j.watson@...
Love and God Bless
Gillian
The whole imposing edifice of modern medicine is like the celebrated tower
of Pisa- slightly off balance.
Newjersey
Yes I know the feeling of the cutting edge. Not to discourage you but it
took my husband 2 and 1/2 years to get on DSSI. Turned down 2 times and
then with the lawyers help he finally got it . He was very depressed. He
did go for therapy and by the grace of God we made it through. Now me on the
other hand, after seeing what happened to him ,I though what will we do cause
we were using my health insurance from work for both him and I and we still
had kids in school. After many sleepless nights and wet pillows and knowing
I was getting worse everyday. I worked in the health field and worked
mandatory 12 hour shifts. I'd work one day and be on crutches for two. Nobody
knew out side my family. I was too proud to tell others except my PA friends
at University Hosp. At that time before insurance had so much control. I
would go in for treatments and oh what a blessing. It would get things under
control for a while some people went into remission some did not. But I saved
all my medical papers ex: hosp admissions, dr visits, any treatments. I went
to medical records and requested to see my records and of coarse you can't
take them out and someone watches you but I just went through and pulled out
what I felt was important. They made copies for me. Then the next time I
went into the hospital for treatments I request a social worker, reumatory
consult, and an a physical therapy consult. I was still scared but there was
this sweet therapist who convinced me that if I were here mom she would want
me to be around for a while and have a little more quality of life than to be
stuck in a wheel chair for the rest of my life. ( Well that was 8 years ago.
I now have a scooter.,for 2 years.) But getting back to my cutting edge. I
went home saw my GP cause I needed a slip to go back to work and told him I
didn't think I could handle it any more and he said "I'll give you a
slip...off indeffintily and you go sign up for SS." Well the short of it . I
did sign up and you know those small spaces on the form well I wrote refer
numbers and page numbers because I needed to let them know straight out that
it was not safe for me or fair to my patients and co workers. I also
attached those papers from my medical records to show it was an ongoing
problem. It was hard for me to give up work but within 6 weeks I knew that I
had been approved but had to wait the 6 months to collect. In the meantime
I was on sick leave and paid my insurance for 6 months then went on cobra and
paid that for 18 months and that brought me up to the time for me to collect
medicare and then continue with a supplement insurance from the one I had at
work. Now I didn't know this was going to happen this way but by the Grace
of God I guess he watched over me. My big problem now is prescription cause
I could not have that on my supplement. Any way I hope this helps you or
maybe someone else out there. It's a rough road so hang in there YOU ARE
NOT ALONE!
Nanny
Hello Carole,
Yes, your symptoms are typically those of P.
Dovonex is very good but: it does not work on the
palms of the hands or the foot soles; it even makes it
worse. Also it should not be used in skin folds. But
for the rest (like your legs f.e.) it is excellent, IF
you get at the little spots from the start. Put a
minimum amount of Dovonex on it twice a day and for
not longer than three days. With me they disappear
after two days.
As for your hands; to prevent them from cracking,
treat them as if they were your first-baby's-bottom.
Keep them moisturized by applying many times a day a
good cream like Nivea o.e. Let somebody else wash the
dishes and buy yourself some pairs of cheap cotton
gloves which you only remove to go to bed. This not
only will protect your hands but keep the cream on.
These measures are very imp ̣rtant because once those
callouses start cracking you'll be up sugar river
without a paddle.
Greetings.
Margaretha.
Hello everyone out there!
The arthritis part of this "condition" is still pretty much the
same...mainly fingers, big toes and knees a bit stiff (could be the
aging process!) The strange part is the psoriasis....it has always
been VERY mild..elbows, hands and some spots on lower legs but never
out of control or "flaky". Lately my palms have been getting round,
flat spots and eventually they peel..almost looks like callouses.
Then, on my lower legs I get spots....almost like chicken pox but
very small. Is this the beginning of an outbreak for me???!! I have
noticed that I get much worse with STRESS and I am not religous about
putting on the Dovonex. When the skin looks better I stop the
Dovnex....maybe I should be using it all the time?
Hope you all have a great 4th of July. Took a ride to Sandy Hook
(Jersey shore)and spotted some of the tall ships...what a sight!
All my best, Carole (CB)
Hi all, I just wanted to say thank you all for sharing your sufferings and successes, its always been a comfort for me when I'm having a flare to come to this list and read about others who have the same problems I do! I also would like to apologize for always reading and not sharing, this makes me feel guilty please forgive me.
To Nanny regarding the itching, I to have lots of problems with the P flares making me itch at night, I have never found much relief in any creams the only thing that works for me is lots of sun or 45min a day in a tanning booth, and I also try to stay away from flannel sheets or any sheets like that because the material hooks and irritates my P.
I'm currently on 10mg of MTX and Leucovorin 20 hrs latter to stop the reaction to the MTX. I am also on 5mg pred., 1mg folic acid, 20mg Arava, and vioxx. I also take prevacid for my acid reflex. This drug regiment I'm on has really been doing the trick for me so far, all except one really swollen toe but I cant complain! I am on the list for free Embrial so maybe one day Ill be able to give it a try? My Dr. is a big Rep for Arava so he gets to put a selected few on the drug for free and I'm one of them, this has been a real blessing in itself, its so depressing when there is a drug you would like to try but without the aid of insurance you cant try it to see if it helps!
Well see why its better I don't write, I get way to long winded! again thanks for all of your support, I pray God will bless you all, you've been a real blessing to me!
Patrick
Welcome sorayap@... to the PA mailing list.
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daily.
Please feel free to browse the archives to learn about
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See our new webpage at: http://www.wpunj.edu/pa/
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PatB and Patty, Moderators
Welcome T.v.Nuland@... to the PA mailing list.
We are a group of over 380 PA'ers from all over the
world who share our experiences by e-mail almost
daily.
Please feel free to browse the archives to learn about
our past discussions, and to send us an e mail
introducing yourself to:
PsoriaticArthritis@egroups.com.
See our new webpage at: http://www.wpunj.edu/pa/
Welcome
Michelle, List founder and moderator
Robert, Webmaster and moderator
PatB and Patty, Moderators
At last I am going to be on vacation for 2 months!!!
School is out and as a school counselor I can now
concentrate full time on my PA. I do this every summer and
with the stress of work gone, the beach, and some good fun I
seem to get tremendously better during this time. The only
thing that does not get better is my PA. Only taking Naproxen
everyday does it for me for now. In September I will start taking
the new medication my Rhuemy suggested. (MTX)?
Just wanted to toot my horn.
See ya'll.
Raul
--
One ought every day at least, to hear a little song, read a good poem, see a
fine picture, and, if it were possible, to speak a few reasonable words.
--Johann Wolfgang von Goethe
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who share our experiences by e-mail almost daily.
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introducing yourself to:
PsoriaticArthritis@egroups.com.
See our new webpage at: http://www.wpunj.edu/pa/
Welcome
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PatB and Patty, Moderators
Dear Pat
Thank you for your response. No I haven't tried Trianeinolone. Is this
a cream or oral medication? Sounds like it has a steriod in it ? How often
do you use it?
Have you ever been hospitalized with psoriasis? When there is that much
coverage I find it real hard to care for it properly. I'm so tired. I'm
waiting for a bed now but because insurance is in so much control they won't
keep you long enough for you to get proper control of the disease and they
have just so many beds and they are full and have a waiting list.
Enough of my whining. Thank you for telling me about the Trianeinolone.
Your itchie achy friend.Nanny
Dear Michelle
I want to thank you for setting up this web sight. I read about it in
the Psorasis Resource. I'm new at surfing but old at PA. I'm really glad to
find you and all those wonderful people out there. It brought tears to my
eyes as I was reading the problems people are having. I've been there done
that .......still doing that. I have good days and bad days. The bad days I
rest the good days you will find me scooting around on my scooter. I can
walk some but not far and not long so my scooter has given me back my life.
I load it in the car and go to shopping and etc. I wear long sleeves and
slacks . The only thing giving me away are my hands. I have psorasis about
70 percent of my body and the PA goes wild when I'm flaring. Right now
that's where I'm at. Is there any hospital that is admitting and treating
this? I know there is no cure but I'd like to get it under control. I've
tried just about ever medication out there. (sulfasalizine,MXT,Dovonex, tar
and steroids etc.) I am unable to take an antiflamitory . I'm on coumadin
and the antiflamitory meds mess it up. Right now I'm taking Vioxx. It seems
to help. What and how are the rest of you coping? Does your family
understand and are they supportive?
Thanks for being there..................Nanny
Welcome Ana_Nord@... to the PA mailing list. We
are a group of over 380 PA'ers from all over the world
who share our experiences by e-mail almost daily.
Please feel free to browse the archives to learn about
our past discussions, and to send us an e mail
introducing yourself to:
PsoriaticArthritis@egroups.com
See our new webpage at: http://www.wpunj.edu/pa/
Welcome
Michelle, List founder and moderator
Robert, Webmaster and moderator
PatB and Patty, Moderators