Re:metetrexate

2008-01-31 13:08:38

I have asked my OB-GYN Dr. about if he had pts. who had babies and took this
drug before pregnancy, and he said he has had pts. who had no problems
having babies whom had takend Mtx. before pregnancy. My rhumi. Dr. explained
the problems with this drug and I trust her. She too has had pts. who
successfully had children and taken Mtx. before becoming pregnant. She also
said that Enbrel helps pts. with RA not PA. I questioned myself for 6 months
on whether or not to take this drug, but I was tired of one joint after
another becoming inflamed and nothing was helping except Vioxx for the pain.
I am taking the chance on taking this drug, but I have not had another joint
become inflamed or affected. When I do decide to have children, I will stop
taking Mtx. and Vioxx 3-6 months before trying to become pregnant. That is
what is recommended. Anyone who is on any strong drug would have to do the
same thing. I guess this is all I wanted to say.
Stephanie

Something that gets me through

2008-01-31 04:40:16

I don't want to offend anyone, but one thing that gets me through
each day when I can't even button my kids coat or braid my daughter's
hair, is that I am a Christian. I know people are rolling their
eyes, but I am telling you it helps to know there is someone greater
than you helping you to get through. I live by Joshua 1:9 in which
God commands us to be strong and courageous. It also helps to ward
off the depression that creeps in if you know you can lean on the
Lord and cry and pray and rant and rave and not worry whether He will
understand as most people can't. hope this gives a glimmer of hope
to some. Lisa

New to Enbrel- advantages, disadvantagles, advice

2008-01-30 23:19:56

Hi,
I am new to this group and I will be starting enbrel in the near
future. I have psoriatic arthritis since I was 17 and I have tried
most all medications and procedures (tar, methotrexate, soriatane,
puva, hydrea) with varying successes and failures. Can you give me
some info on advantages and disadvantages of enbrel and any other
advice.
thanks,
Alan

Re:Roll Call of Enbrel users

2008-01-30 21:55:10

<
Hi Becky,
I was on MTX for 2 1/2 years and felt horrible all the time. I started taking
enbrel in May of this year. I have felt better than I have in many years
mostly with the PA. The P has stayed about status quo. The other thing that I
love is that I don't tire as easily as I used to and have more stamina. I
have gotten to where I eagerly await my twice weekly dose. I know that sounds
wierd, but it really represents feeling human again.
Nancy in Wisconsin

New poll for PsoriaticArthritis

2008-01-30 18:54:22

Enter your vote today! A new poll has been created for the
PsoriaticArthritis group:
How long have you been on Enbrel? How
much has it helped you? Are you also
taking another DMARD?
o not on Enbrel
o less than a week
o less than a month
o less than a year
o a year or more
o no help
o little help
o 50% improvement
o MAJOR improvement
o I am on other DMARDS
o Enbrel is my only DMARD
To vote, please visit the following web page:

New poll for PsoriaticArthritis

2008-01-30 05:52:12

Enter your vote today! A new poll has been created for the
PsoriaticArthritis group:
Are you on Enbrel?
o yes
o no
To vote, please visit the following web page:

Roll Call of Enbrel users

2008-01-30 01:12:53

It seems to me that the number of Enbrel users on this list is increasing every
day.
Just to satisfy my curiosity, I'd like to do a Roll Call (for lack of a better
word) of Enbrel users to see how many of us there are.
I'd also be interested in knowing how long you've been using Enbrel.
Thanks,
Becky

mouth sores

2008-01-29 23:12:31

try using toothpastes that do not contain the needless foaming agent sodium
laurel sulfate(SLS)...........Rembrandt co. makes a few different flavors
and it was worth the few dollars extra to get relief......i have suffered
for years with canker sores and on line research pointed to this additive
as a big offender.........there is also a mixture of maalox,
diphenhydramine , and viscous xylocaine that can be used to numb those
cankers already present as a means of temporary relief........this is used
in oncology for the same purpose........you M.D. will need to write for the
xylocaine and perhaps the pharmacist can mix it or give direction but it is
quite soothing. nature/health food stores also carry some toothpastes
without SLS.........back to lurking, maureen(Mo)

new member

2008-01-29 14:20:24

Hi
My daughter, Katy, has just been recently diagnosed with psoritic
arthritis. She has suffered with symptoms since she was 8 years old
and is now 12. She doesn't suffer from psoriasis(at least not yet)
but there is a family history of psoriasis. It is at least nice to
give a name to this debilitating condition she has suffered for so
long with no treatment. All blood tests,x-rays and ct scans to date
have been normal. The inflamation and swelling in her knees,and in
the last year her fingers has caused immense pain. She suffers neck
pain and headaches. We started an exercise program but this seemed to
worsen the pain. In the last year her eating habits have remained the
same but she has added almost 20kgs in weight. The rheumatologist has
put her on anti-inflammatories but she can't swallow tablets so is
limited to what she can take. It was wonderful to come across this
website and see she is not alone.
Sue Lillywhite

Rheumatologist nurse called today

2008-01-29 09:58:35

Well got more not so thrilling news...I thought maybe
I had a hold on things more, but I guess I am just
antsy...Plus then this afternoon, I get a call from my
Rheumatologist's nurse and my sed rate is even higher,
something else is wrong in my blood work and my
protein level is a plus 3...They wanted me in "AS SOON
AS POSSIBLE" and I told em they will have to wait till
monday for my appt, cause I have to get the x-rays
done they want tomorrow and then thursday I go see my
regular doctor to follow up and then to top it off my
little ones are trying to get a bad cold...So just
stress...It is like a never ending battle...:) Pam

oil of oregano vs. oil of thyme

2008-01-29 03:53:53

Duncan--I am interested in what you had to say about oil of thyme
being substituted for most oil of oregano sold commercially, and
about oil of thyme being toxic. Why is oil of thyme toxic when the
herb is not? Also, could you tell us where you found out about the
thyme/oregano substitution? I'd like to follow up. All my dealings
with Penn Herb so far have been completely trustworthy, and if there
is a problem there, I think it needs to be addressed. Thanks.
Sarah

Mouthwash

2008-01-28 23:33:29

Thank you so much for this tip. I am plaqued with mouthsores since having to
discontinue the Enbrel while waiting for a bad sinus infection to clear up. I
take folic acid, but still have multiple sores. Most mouthwashes are way too
harsh. Thanks again. Linda in Poulsbo
From: dion547@...
Subject: Canker sore relief
Hello everyone,
I just wanted to let you know that Colgate makes a mouthwash
called Peroxyl. It is an antiseptic oral cleanser that promotes the
healing of oral irritations. It is made with peroxide and it eorks
pretty good. I got it at Wal-Mart for about $5.

New to the list

2008-01-28 21:28:36

Hi...My name is Pam and I was diagnosed last week with
Psoriatic Arthritis...I have been on my medication for
a week now and am just trying to I guess see if it is
going to work or not...They put me on Sulphalazine and
vioxx...I have had psoriasis for as long as I can
remember and I really don't know when the PA showed
up, but I know in the past year it has gotten really
bad, so my doctor referred me to a Rheumatologist and
she immediately said that it was PA...So at least I
have gotten started on trying to help the pain and
stiffness...Pretty much the pain is in all my joints
and just varies day to day on how I feel...I am also
trying to get to the source of my migranes and
dizziness, but right now I am taking each thing one at
a time...But just wanted to introduce myself...:) Pam

re:redmarks

2008-01-28 13:02:40

mike,
don't get discouraged if you have a red mark where your psoriasis was.
it will eventually fade away.i been taking neoral since feb i think, and
now you can't tell where the spots were. and let me tell you, i was
COVERED with psoriasis!
fyi, i was briefly on mtx and told to take 2 types of contraceptives to
keep from getting pregnant. and i would rather give birth to triplets
naturally than have another liver biopsy! but that's just my opinion.
enjoy this beautiful fall day
susan in ohio

Newbie wanting information please

2008-01-27 23:44:27

Hi there everyone,
You sound like a nice friendly bunch of people. I'm from Down
Under...New Zealand this time......."Gidday Ronnie" (across the ditch
in Australia) :-)
My 21 year old niece has just been diagnosed with PA and I was
wondering if some kind person could give me some URL's so I can bone
up on the subject.
I have Lupus myself and am therefore quite clued up on immune
disorders generally speaking so it's the specifics of PA that I'm
after.
I'm not sure what position this group takes on treatment but I would
be very interested to hear about any treatment other than
the 'orthodox' that you might have tried.
At this stage she has been given Celebrex.........any
comments...personal experience?
Any info, tips etc. would be VERY much appreciated!
Thanks,
huggles,
lisbeth

New to this group

2008-01-27 17:27:08

Hello everyone, my name is Kevin i'm 37 and live in Tasmania
(Australia)
I have been looking on the net for about 12 months for support or
info on PA. My username is bentfeet because i have it in both of my
feet and they are going thorugh a major shape change. The thing is i
was told that it would only effect one part of my body. But as i read
all your e mails i realize how inaccurate that is.
I have now refused to take methotrexate as it was posion to my body.
So i'm looking at pain management. I think a chainsaw would be the
best thing to solve my problem but my family and freinds keep telling
not to do it.
Hope to catch up with you all in the chat room some time.
Kevin

MSM

2008-01-27 13:54:45

I searched the archives and was a bit surprised that MSM didn't have
any references. Considering its importance I feel something's amiss
here.........a friend who's taking ozone therapy for her psoriatic
arthritis has had success while using MSM. Since we don't get enough
in our diet, supplementation is most wise.

Subject: Remicade advice please

2008-01-27 11:55:20

In a message dated 10/6/01 5:24:17 AM Eastern Daylight Time,

Pain, fatigue, pills, and Depression

2008-01-26 23:50:22

Hi Jeanne,
I notice that pain and depression go hand-in-hand. When I'm in pain, I am
not myself. I feel depressed, and why shouldn't I? Being in pain stinks!
But going through life both in pain, and depressed, is THE WORST - so I'm
learning to manage both the best I can. I take methotrexate, which may
also be contributing, but I'm just not sure. I wouldn't be surprised if
the meds you're taking do contribute.
It takes effort on my part not let the depression get the best of me - it's
hard to watch all my friends having kids, running marathons, working while
going to grad school - but my husband reminds me of the compensation rule -
when one thing doesn't work well, others will flourish to compensate. I
can't be as physical as I once was, so I'll have to develop other interests
- painting, writing, intellectual interests, maybe becoming a great friend,
more enlightented...
What helps me is keeping my life as stress free as possible. I take naps
in the evening if I need to, make sure I get time to do something fun most
days, and show appreciation for those around me, who I'd be at a loss
without. I also go to counseling pretty regularly, and work with
meditation - which REALLY helps me, because it is about dealing with pain -
both physical and emotional, and having compassion for yourself and what
you're going through. I tend to get very angry and critical of myself, but
when I think of others who have this problem, I have total compassion and
understanding, so it's made me aware that I need to have that same
understanding of my own situation.
It's hard living in a society that expects so much of us - ambition,
success, kids, great jobs ... If you need anti-depressants to help you, or
counseling, so be it! Do whatever you need to do have peace of mind.
Kristin Boice

Remicade advice please

2008-01-26 22:17:18

Hi everyone, I have been suffering from PA for thirteen years.
Like many PA sufferers I was misdiagnosed for the first three years
of my symptoms. I'm 39 years old and I have PA in both hands, both
feet, back, neck, both shoulders and the most painfull spot my
sternum. I have been on just about all traditional and non
traditional meds with limited success. Last week the doctor who
originally diagnosed my condition called me to ask if I would like to
participate in a 50 week Remicade study, or more acuratley the study
is titled, "A Multicenter Placebo Controlled, Double Blind,
Randomized Study Of Anti-TNF Chimeric Monoclonal Antibody (cA2,
Infliximab)In Patients With Active Psoriatic Arthritis". (He is no
longer my doctor due to a change in insurance)I read the information
he sent me and to be quite honost I'm not sure if I should go through
with this or not. My doctor is leaving it up to me, other than my
artritis I'm in fairly good physical condition. Any and all advice
would be greatly appriciated. Thanks, Joe.....

PA History and Support

2008-01-26 20:10:06

Finding this list has been a godsend for me. I have done extensive
medical research related to autoimmune topics at sites like medline
because I have suspected I had something like this. But hearing the
stories of others has given me a new strength, understanding and
optimism.
I developed psoriasis at the age of three. Began having artritis
problems at adolescence. Would get tears at the "enthesis" where
ligament, cartiledge and bone connect; from sports injuries.
I believe this autoimmune condition causes fear, confusion,
depression, irritability, anxiety, memory problems, and other
emotional and psychological disfunctions. I did not recieve an
accurate diagnosis until the age of 43, my problems were called
psychosomatic.
Health foods, spiritual practices, education, and exercise have
helped me to manage my illness but six years ago I began seeking
medical sollutions. I was on vicodin, muscle relaxers and klonopin
for several years which allowed me to function well enough to learn
more about pain management and how to use my body without harming it
too much.
I have been off those drugs for two years and now use ritalin SR
20mg. (helps with attention and fatigue), nefazodone (antidepressant
that helps with sleep) neurontin (chronic pain) and naprosin.
It really interests me to hear the stories of others regarding the
way disability and the chemicals related to autoimmunity affect our
brains and relationships and the ways we learn to cope and heal.
Other connections I'm hoping to hear about are associated conditions
related to my intestines (very sensitive), eyes (dry and burning,
photosensitivity), hearing (hyperacusis), throat (chronic sore
throat), fatigue and heat and cold intollerance.
Thanks to all you brave people who have reached out, this feels like
a family to me that is much more supportive and loving than the
disfunctional family I grew up in.
Sincerely,
Fred

Oil of Oregano works....

2008-01-26 12:52:06

I just wanted to say that I have tried so many things to put on my skin to
make my psoriasis go away..... The only stuff that would do the job until
now was Ultravate Ointment...(steroid) ....
I even tried Coal tar shampoo and several other solutions that said it will
"cure your psoriasis" and I had no luck..... But this Oil Of Oregano really
work......during the last 3 days , I have been putting small drops of the
oil on my psoriasis and covering it up with a bandaid .... And it is gone in
3 days..... I'm very amazed by this.. I thought it was going to be another
rip-off product that I bought... I was wrong.... Now I have to go to the
store tommorow to get more...... I cant do much with half an ounce... It
even says you could take this stuff orally.....but it tastes terrible....
Tastes like i'm drinking perfume or something.....
mike

Prednisone, Enbrel and PA..what I found out the hard way

2008-01-26 08:03:06

Hi everyone,
Just wanted to weigh in on the 'prednisone' question. I got psoriasis
at age 12 and developed PA, quite severely (almost couldn't walk) at
age 21. My Rheumatologist prescribed Prednisone, 5 mg a day for me
after I didn't respond to any of the standard anti-inflammatories. It
was wonderful and I felt great. My life was saved. Two years later,
the arthritis got worse, so the Rheumatologist upped the dosage to 10
mg per day and prescribed Tylenol with Codeine....Again, I did
wonderfully....for a while. When I tried to go off of the prednisone,
my ENTIRE body flared up with horrible psoriasis and my joints
inflamed terribly. It took me the last four years to taper off of it.
I had to go down 1 mg at a time, very slowly. And, I developed an
addiction to codeine which I finally conquered approximately a year
ago. Also, thanks to the prednisone, I am now a 33 year old man with
Osteoporosis...The Dr. says I have 35 % less bone mass than a healthy
man of my age.
2 and 1/2 months ago, I started on Enbrel. It has been the most life-
changing drug I have ever tried. My pain is almost completely gone
and I take only the occasional ibuprofen. The joints that were
already damaged, remain damaged, but I no longer have any
inflammation. I am virtually pain free and full of energy. And the
next best thing is that my skin has cleared at least 95%. I used to
use steroid creams and tars and now, I only use a very weak cortisone
cream after my shower in the morning. I finally feel and
look 'normal'. I feel like I am truly living for the first time in 20
years. I was always too shy to date or have a relationship and am now
feeling much more confident.
Anyway, I hope that I haven't said too much or bored you with my long
story. Just wanted to share a note of caution about prednisone
(osteoporosis, bruising, swollen face, etc.) and let any of you who
are questioning what is out there, know that Enbrel has really worked
for me. Do give it a try if you are able to.
Thanks to all of you for your posts. Although I don't post much, just
reading helps me to know that I'm not alone....especially enjoyed
reading about people's experiences with injecting themselves for the
first time with Enbrel when I was about to have to go through it. (It
is easy and doesn't hurt much, by the way, if anyone's wondering)
Thanks again and God bless you all,
Steve, Miami Beach FL

psoriasis = bacteria, fungus , yeast , parasites...

2008-01-26 03:00:36

Hi,
Years ago, I suffered from fatigue, and thought it might be due to
hypoglycemia (this was before I had PA). So I stopped eating sugar
entirely - one of the hardest things I've ever done - but I've basically
kept off sugar for the most part.
I haven't done a strict carb-elimination diet because I find it impossible
to follow, and still function socially - plus, I feel too hungry when I
don't eat any carbs. I do try and eat whole grains and slower burning
carbs (brown rice, high fiber foods) to keep blood sugar levels in check,
but that's the extent of it. From the reading I've done, <persnal
opinion
breads, rice, etc - is healthy. If you're active, like I am, you're body
simply can't get enough energy without carbs, according to the nutritionist
I work with, and several books I've read (Dr. Andrew Weil, Dr. Liz
Applegate). </personal opinion
I'd be interested in reading studies on this. I used to work at a natural
foods store, and candida was blamed on everything from bad breath to
fatigue to arthritis... so I'm skeptical. If you have sources, please pass
them on.
Thanks!
Kristin Boice

Re Arava side effects

2008-01-25 19:49:10

Steve,
I need to take Prilosec and Tagamet twice a day since I went on Arava, else
my stomach is in agony. My BP is raised from being on Neoral anyway, so we
just increased
my dose of Corgard a little for the Arava.
Hope this helps,
Michelle

Starting Enbrel

2008-01-25 10:03:26

My Enbrel should be here thursday. After waiting over two weeks to
get it it seem as though I have through my bad flare up. I haven't
even taken any pain meds today (I am still taking 5mg prednisone and
2 Celebrex a day). So, I am wondering if I even need to start the
Enbrel. Maybe I could get by on just the celebrex and prednisone. I
am by no means pain free - I think there will always be that dull
and constant ache but I do feel functional. I am so used to just
having bad days - are these good days usually short and far between
(this would be my first)? My doc said if the enbrel works I should
be able to stop all other meds (I am so tired of taking so many
pills)! I am not sure which is the lesser of two evils - the enbrel
or the prednisone/celebrex. It seems like both of them can have some
nasty side effects. Also, I know that you are supposed to take a
DMARD to keep the arthritis from spreading to other joints. Is
Enbrel considered a DMARD or does it just reduce the pain and
inflammation? If so, is it necessary to take something else to
prevent the arthritis from progressing?
Leslie

MTX &amp; Age

2008-01-25 00:05:13

Greetings all-In response to the questions posted. I am 30 years old. I was
diagnosed with PA at 21. I have bone damage in my back, ankles & fingers from
the PA. I tried MTX when I was first diagnosed. It did nothing for me except
raise my liver enzymes, make me feel extremely hot for days, and made me feel
like I had the flu constantly. I have also tried the new supposed miracle drugs
of vioxx& celebrax and they did nothing for me, in fact after attempting them I
had to get a cortisone shot because my inflammation was so out of control. I
lived in CA for a year and had no problems with my PA or P. In fact, I was off
all medication for both during that time. Currently, I live in OK. and I am on
Enbrel, Relafen and pain killers PRN. I have only been on Enbrel for a month
and I have had a marked improvement. So much of an improvement that they have
canceled the surgical cleaning out of my finger joints. I feel like I have
gained back some of my life with the Enbrel - I have energy, little to no
morning stiffness
, and a hugh decrease in pain.
What I have gained most from this list is that there are a wide variety of
treatments and different things work for different people. However, the biggest
thing I have gained from this list is a great sense of appreciation for my
Rheumatoidologist. She is on the cutting edge of medicine. She listens to my
complaints, explains things clearly, and is always willing to try something new.
She also has clearly stated that I should not spend the rest of my life in pain
that she will continue to work with me to make my life pain free. She has
stated she wants me to continue to be able to doing the things I love like
rappelling, canoeing, rock climbing, camping, horseback riding, jet skiing and
traveling. Hope this helps any of you new comers.
Quick question - how many family members do I have on the list?
Robyn

re:age

2008-01-24 23:48:14

hi,
i am 37. i first started having trouble when i was 30. i had to quit working
when i was 32, and started receiving disability. i have 3 kids,
12, 11 and 7. fortunately, for the last couple of years, my psoriasis has
been tolerable, and my pain managable. the pain never goes away, but
it doesn't control my life anymore. i can pretty much do what i want,
i never was a real physically active, sportsy, outdoors person, so i
don't miss what i never cared too much about anyway! i do miss working,
hopefully one day i can go back. i have learned to listen to my body,
i know how far i can go without having to pay for it for a week, and my
kids are tremendously helpful around the house. my husband has never
doubted me when i say i can't do something, but he encourages me to try.
it took a while, but i learned that i am stuck with this disease, but it isn't
going to ruin my life. it may not seem fair that you got this disease so
young, but now that you have, how you deal with it is the important thing.
you have all our support, and we are all here to help.
good luck
susan in ohio

mtx

2008-01-24 11:37:52

i have not posted lately. This is marcy. I will post furthur when i
have more time . I just wanted to say and tell you guys breifly my
experiences with mtx. In short, i have a very sensitive body
chemistry. I knew this, and decided anyway to do mtx. I did it for
only 5mo thats it.!! I now have i think permanent liver damage from
it. This can happen people you wouldnt believe what iam going thru
now !!!! I take embrel now. Please be careful i would suggest dont
ever take that stuff there are better drugs out there !! marcy

psoriasis = bacteria, fungus , yeast , parasites...

2008-01-24 09:46:37

The doctors I know who treat people with autoimmune diseases seem to be
just as frustrated with lack of easy answers as we are, so I highly doubt
that conventional treatment is all about making big money. My doc would be
more than happy if I never came to see her again! But the disease is very
complicated, and not only is there no one drug that works for everyone,
each drug works differently for each one of us, and there are no answers
yet.
My personal opinion on diet and PA is, if it were diet related, the
medical community would have figured that out by now, just like they've
figured out the diabetes and gout are dietary related. Some people have
expressed a lot of relief from dietary changes, but I haven't. I had no
luck on evening primrose oil, plus, it was expensive! I do eat salmon and
flax seeds for omega-3's because there's been a lot of research on the
benefits of omega-3's for general health, but as far as herbs go, I refuse
to spend that kind of money until they standardize their products - talk
about a big money thing! From the studies that have been done, most herbs
don't contain the drugs they claim - and they are expensive!
From my experience with this disease, I've learned to think critically
about any and all information out there - enbrel, cox-2 inhibitors,
"nightshade vegetables", herbal extracts, etc. One day it's a miracle drug
(vioxx), the next day the "previously unknown" side effects come out in
some medical journal. Be careful about putting all your trust into either
alternative or conventional approaches. Both have their good and
not-so-good points.
For What It's Worth...
Kristin Boice

psoriasis = bacteria, fungus , yeast , parasites...

2008-01-23 22:25:00

After all the reading I have been doing on our condition, It all
points to a type of infection that we must have... Bacterial ,
parasitical , yeast, or fungus...
I just dont understand why the mainstream doctors do not understand
this and are treating us with pain killers and all this other sh*t...
Is it really all a big money thing?
Did anybody here try the Oil Of Oregano stuff? I just bought it today
and it said alot of interesting things about psoriasis and
arthritis.. A Doctor From the university of tennessee mentioned how
psoriasis is some sort of parasite like disease.. And the parasite
itself is actually in the psoriasis lesions themselves.. But they are
all fed by the main area of parasites that are located in our
intestines.... I would like to know what others think about this?
If we could eliminate all these critters from our body we should be
cured... We all have an over-active immune system.. But its whats
causing our immune system to be over-active...thats the problem...
As soon as I eliminated sugar and yeast from my diet, My psoriasis
has been practically non-existant....and the same with my arthritis..
That tells me that the yeast, fungus , or whatever the hell it is ,
is feeding off of this sugar and all...
I'd like to know if anyone here have been put into remission of their
disease , or have felt much better by taking any of the following
supplements? Flaxseed oil , Primrose oil , Omega 3 oil (fish oil) ,
grapefruit seed extract, grape seed extract , oregano , caprylic
acid , garlic , nystatin..
I have had amazing results with high amounts of Primrose oil..
thanks,
mike

ozone therapy / wholistic

2008-01-23 22:22:33

I searched the archives and didn't come up with references to ozone
therapy...hmmm....
By way of an update - a head's up to a pretty successful therapy
that's little used in North America, but has been used for over 50
years in Europe...even by our politicians, federal agents who can
afford to travel for it and rich folk who can't get the treatment in
North America. They also go to Mexico for it.
While doing my studies to become an ozone hyperthermic technician
here in Canada I found both psoriasis and arthritis listed along with
other autoimmune disorders in my course as responding to ozone
therapy. There are 256 so-called 'diseases' listed; cancer - all
types is mentioned only once.
Many people who can't afford an ozone kit work wonders with Homozon.
Any questions on ozone and peroxide therapy can be answered

Starting Arava

2008-01-23 18:06:41

O.K. I am frightened, but I am going to begin Arava. I got the pills
from the mail order pharamacy (it's cheeper), now I have to go and
get the starter kit from the doctor. I didn't take the kit with me
initially because I didn't know if my plan would pay, but it pays for
three months of Arava with a $50 co-pay.
Has anyone had bad side effects with Arava? My right hand is getting
much worse and problems in my neck. No where else, I can even jog,
but my neck and hand are killers. So the doc wants to keep me on MTX
and take me off of Plaquenil and Sulfa. I take Ibuprofan too. The
literature says be careful for MTX and Arava because of the hardness
on the liver, but he is a good doctor, I thing, not agressive enough
though in my opinion with steroid shots into the joints which my
other doctor did frequently since I have a high pain threshold.
Anyway, anyone with Arava side effects?

new to this!!

2008-01-23 11:31:14

Hi everyone,
I am looking forward to hearing of other peoples experiences and
maybe learning new things about the disease and its treatments. I was
diagnosed with PA two years ago after suffering from severe pain in
my ankles, knees and wrists. I was playing football(soccer!) every
week but had to stop due to the pain. The Dr sent me for tests and
diagnosed PA. I was put on Methotrexate and have been on it ever
since. My skin has cleared up a good deal but the joint pain has
progressively worsened.I was diagnosed with Psoriasis at age 9.
Although I feel bad on the Metho it is better than the alternative
joint damage! I am unable to work as all my life I have done manual
jobs. Since I`ve been ill I have taught myself internet programming
and begin my degree in IT early next year. I also have my own web
site which keeps me busy.
I am 36 (near 37), married with 6 children, only one of which has
Psoriasis (my only daughter aged 13).We live in London,England.
Hope I haven`t bored you too much!!
Best wishes,
Tony Shaw
www.tswebdesign.com

Receiving mail from PAUL

2008-01-23 08:13:21

Re: Re: [PsoriaticArthritis] Prednisone
and other stuff
Date:
Wed, 26 Sep 2001 02:44:06 +0000
From:
"paul" <rootp@...
I've received at least 5 e-mails from this person tonite and have gone
to NO MAIL. He send attachments and can easily see they have nothing to
do with psoriatic arthritis!
Please be careful and I wish you all well.
Nanc
[Moderators Note: Nancy, the attachments to those messages CONTAIN A COMPUTER
VIRUS - PLEASE DELETE THEM ON SIGHT AND DO NOT OPEN THE ATTACHMENTS! Any

Request from a UK Member

2008-01-23 03:17:40

Hi Friends
Greetings to those of you that know me and a big hello to if you are
new or haven't got a clue who I am!!
I'm Nigel and live on the South Coast in the UK. I have had Psoriatic
Arthritis for 8 yrs now and have in recent months been greatly helped
by using alternative nutritional supplements that Neways' produce
(International co based in Utah). I run a local support group and
have organised meetings and a conference as well as providing
whatever support I can.
I will get straight to the point - I am looking out for anyone in any
country (especially Europe and USA)who would be interested in either:
1. using the Neways products personally
2. becoming a distributor
The benefits of becoming a distributor would mean that you could earn
some money and work in your own time at your own pace. I have been a
distributor for some months now and the company is one of the best
that I have come accross in this kind of sales. I do not make any
claims of High earning as I believe you get out what you put in. I
also do not make any claims of curing diseases but can only give you
my own testimonial and that of others. If you are interested - please
email me at AskNigel@... and visit the web site
http://hometown.aol.com/AskNigel/enter.html
Many thanks
Nigel (UK)

OT: Fw: Purple Ribbons

2008-01-22 15:54:59

I think this is important for us to do! Charlene

Subscription

2008-01-22 10:37:01

Hello.....Is there a problem with this board? All of a sudden I have recieved
no post for several days and the messages I sent never posted but were not
returned. I hope the group wasn't discontinued because it is a good source of
communication for PA suffers and especially for us on Enbrel.
Ronnie E.

Review of the Guidelines for Off-Topic Posts from Michelle- group Founder

2008-01-22 03:59:25

Off Topic posts are not encouraged per se, however, they are a necessary part
of the message mix for a large number of members. In order to deal with Off
Topic Messages I have asked two things:
1. The message MUST be labeled****OT***** clearly and in caps so that those
who are not interested can skip by quickly.
2. The limit of OT messages per day is 2 per person.
3. As with all messages, I ask you to cut down on the cutting and pasting of
previous messages and keep it clear and brief when explaining what you are
responding to.
Thanks again.
Michelle
group founder

positive reinforcement from Sharon

2008-01-21 20:38:43

Thanks, Sharon!! You started my day with a smile. As for how painful and
debilitating as this disease can be, I only know one person who's enough of a
jerk that I'd wish it on them just to raise their consciousness. But you're
right -- everyone should be painfree.
Someone asked about the injections with Enbrel. It's been my experience that
the needles are sharp. They're also rather short. I tend not to feel the
injections in either arm or my left thigh. But my right thigh? For the most
part, I don't feel the needle going in but I do feel it coming out. For all the
relief I get from that stuff, I'll tolerate two seconds worth of annoyance. My
hubby is happy that I've started doing some of the injections myself (he doesn't
want to hurt me - he's so cute). Considering that sliding the needle in,
hitting the plunger and pulling it out takes maybe 10 seconds, 15 if you're
really slow? I'd sooner inject Enbrel daily than go for one shot of cortisone!
I swear that stuff feels like it's injected with a railroad spike. The Enbrel
injections are nothing. Trust me on this. I don't like needles any more than
anyone else. They are strictly no big deal.
Dianne in Boston
A clean desk is a sign of a cluttered desk drawer.

sepsis

2008-01-21 11:35:05

http://health.discovery.com/diseasesandcond/encyclopedia/1760.html
The above link should take you to a page of frequently asked questions about
sepsis. Guess I'm lucky with Enbrel, my immune system is really good. But
there are cautions for people who have a compromised immune system. If you're
prone to infections, Enbrel may not be a good choice.
Dianne in Boston
A clean desk is a sign of a cluttered desk drawer.

Pa exercise

2008-01-21 09:04:32

I suffer from P.A. with an affected ankle,knee and some sausage toes etc.all on
one side
My treatment is "FLAMRASE EC" Diclofenac Sodium 50mg
and SULFASALAZINE.
Is anybody on similar treatment?if so have you any side effects?
Anybody got any information on appropriate exercise programmes?
Pete

politics off topic?

2008-01-21 05:48:16

Dear Friends,
It brought great joy to my heart to recognize the space of clear
intention that most of you have manifested. Without going into a lot
of detail about myself at this time, let me just say I truly
appreciate the way you have shown up on a level representing our
highest nature.
I am finding that it really interesting to hear how different people
are reacting to the recent political events. Personally, I am trying
not to become emotionally involved in those events, as that is just a
fraction of the tragedy and suffering that goes on every day in this
world.
I believe the best thing that can come of this is for this country to
take a look at the part we have played to bring this upon ourselves.
In the meantime, life goes on, our inner landscape needs tending and
nourishing so we don't project our repressed emotions outside
ourselves. Bringing more love to ourselves and the world seems like
the only sensible course of action.

Re:VIRUS

2008-01-20 16:49:34

took addresses from my computer of this group. I know that it took Nigel's
address. If you have any questions write to me at jim.mcnutt@...

OT deluge

2008-01-20 15:32:18

I'm new on this list, so am a bit reluctant to say this.
But since I've been on this list, I've been deluged with posts of which
50% of them seem offtopic. I'm on numerous lists, most of which are
unmoderated, yet seem to have much less offtopic content.
Is this the norm here?
--
- Mark

Sclerotherapy aka Prolotherapy

2008-01-20 14:39:52

I just heard about this type of treatment but I can find very little about it
on the net. Can anyone point me to more information?
Thanks,
Jed

PA psoriasis question: sunlight/tanning

2008-01-20 06:16:12

Hi everyone,
I've read some comments about the use of ultraviolet light for
treating psoriasis and know sunlight exposure (in moderation) may
help ease plaques.
Does anyone have any experience with a tanning bed? Would that be
considered a reasonable source for UV light? There's one at my gym I
can use free...
If I can avoid taking any more Rx drugs for PA, I'd certainly like to
do so.
Thanks,
Bryna

MRI of the hip

2008-01-20 01:50:11

Charlene writes:
"The radiologist said the marrow in my hip bones appeared depressed -
like someone who was or had
undergone chemo therapy."
Here's how I understand this, (realize my field was eyes, not bones, but
I'm reasonably sure this info is accurate). When we are young, the
marrow in our bones contain a lot of red blood cells and appears red.
As we age the marrow turns yellow. Chemo therapy destroys the bone
marrow (hence a bone marrow transplant after chemo). IF the marrow grows
back, there are more red blood cells in the new marrow and it appears
speckled on MRI. Apparently, this is also a very common finding in
smokers so if you are a smoker, that may be your cause. Obviously, there
are diseases that can cause this too but I don't know enough about it to
give you accurate information. Better ask your rheumy.
Barry
This e-mail created with 100% recycled electrons

Re:Tests that show joint Inflammation

2008-01-19 14:14:03

Hi Michelle- Yes, this is true. Dr. Brown, who developed the
antibiotic therapy for arthritis, wrote that he used bone scans
routinely as an excellent diagnostic to watch the progress of
treatment. I've wondered why this isn't commonly used.
regards, John

Re:Tests that show joint Inflammation

2008-01-19 04:59:29

I have been told by two friends that bone scans that are done routinely now
for women to check for anything abnormal like a tumor or the like show the
least amount of inflammation. I was thinking to myself that it sounds like
the perfect "proof" of the PA wrecking its havoc on our lives. Just a
suggestion.
Michelle

Re:Long term use of cortisone by mouth for pain

2008-01-19 00:22:58

This has been a heated topic lately on this board. Most of us have agreed
that it has not been the way most doctors want us to go. It appears that
old-line doctors that may not be up on the latest meds may still be pushing
for the use of steroids long term-but with the several severe side effects-
especially in someone with the skin component of the disease, it is just not
medically advisable these days with all the other options available to us.
Now we have multiple drug combinations that are possible that can be taken as
tolerated.
For instance, Once Methotrexate seemed to wear out on me, the doctor added in
Neoral. It made a large difference. After that wore off, we switched to
Imuran and that worked a while on its own. The point is-that at no point did
I take oral steroids-only a few times did I get a few Intra-articular shots
in a particularly tough joint that would not clear up when everything else
did. Even then-sometimes the shot worked-sometimes not! We all have so many
choices now-between doctors, medical centers and newer and newer treatments.
I cannot wait for the newest anti-Interleukin-1 medication that is coming out
in IV in November. I pray that BC/BS has the heart to approve such a new
treatment!
I hope I gave some food for thought- I certainly did not want to
criticize--just give you some idea of what is out there.
Michelle
group founder

patient's assistance program

2008-01-18 17:34:44

Hi Jan. No it is not a state or federal program. This is actually
funded by the maker of Remicade themselves. The way I heard about it
was from my rheumy who contacted the Patients Assistance Program with
the Remicade company. The dr. has to fill out forms and send it in
with a paper you fill out as to why you need the financial assistance
for the medicine, with your tax papers to verify income. They process
it pretty quickly (mine was within 2 weeks of the doctor sending the
paperwork) and notify you and your doctor as to approval. It's been
great medicine and clears up the psoriasis as well. Good luck. Let me
know if it works out.
Lisa

new member/question

2008-01-18 14:55:33

Hi Everyone: Just wanted to let you know how impressed I am with this
group. I just joined a week ago and this is the best place to get all
the information I have been seeking- real people with real answers.
My hubby is 39 and has had PA for about 6 years now. He is a very
determined man who rarely complains but I see how this disease is
affecting him and it is nice to know he is not alone. Also all the
info on meds is appreciated. He has been on metho 25mg for a long
time (5 years) and also takes predisone 10 mg daily, and has been for
5 years now. My question is : Do you feel this is a lenghty time to
be on predisone at this dose? I hope someone has an opinion. Thanks
again.

Newsletter Edition No. 2

2008-01-18 14:46:27

PSORIATIC ARTHRITIS NEWS AND VIEWS VOLUME 1 ISSUE 2 SEPTEMBER
2001
PSORIATIC ARTHRITIS MEDICAL NEWS
We reported in our first newsletter about the new psoriasis drug under test
called "Alefacept." This issue begins with additional information as reported
in the New England Journal of Medicine.
Alefacept Reduces Severity of Chronic Plaque Psoriasis
WESTPORT, CT (Reuters Health) Jul 26 - Alefacept (Amevive; Biogen) appears to
be an effective and well-tolerated immunomodulatory treatment for chronic
plaque psoriasis, according to results of the multicenter Alefacept Clinical
Study, which appear in the July 26th issue of the New England Journal of
Medicine.
"Alefacept was designed to interfere with the co-stimulatory pathways that
occur when an antigen-presenting cell meets a memory T cell," co-investigator
Dr. Gerald G. Krueger, of the University of Utah Health Sciences Center in
Salt Lake City, told Reuters Health. "We were hoping it would also hook onto
a natural killer cell and therewith eliminate the memory effector cell that
causes psoriasis." "As we demonstrate in our paper, there is a direct
correlation between memory effector T cells and improvement in disease," he
said.
Dr. Krueger and associates randomly assigned subjects to alefacept (170
patients) or placebo (59 patients). The treatment group received alefacept in
doses of 0.025, 0.075, or 0.150 mg/kg, administered IV once a week for 12
weeks. Five placebo group patients and three alefacept patients discontinued
treatment because of worsening of psoriasis.
Two weeks after completion of alefacept treatment, mean scores on the
psoriasis area-and-severity index were lower than baseline by 38%, 53%, and
53% in patients receiving 0.025, 0.075 and 0.150 mg/kg, respectively. These
scores were significantly lower than the 21% decline observed in the placebo
group (p < 0.001).
Twelve weeks after treatment, between 42% and 63% of patients treated with
alefacept had at least a 50% reduction in baseline score, compared with 32%
of those given placebo (p = 0.02). Between 19% and 33% of patients who
received alefacept exhibited at least a 75% reduction versus 11% in the
control group (p = 0.02).
These results were mirrored in the group's recently completed phase III
trial, Dr. Krueger told Reuters Health. In this trial, more than 1000
patients were treated with alefacept 0.075 mg/kg, either IM or IV.
"Again, we saw a delayed response," he said. "If someone achieved 50% or 75%
improvement immediately post-treatment, they either stayed there or got
better during the next 12 weeks. At the end of 12 weeks, they were offered
another course." Twenty-three percent of the psoriasis cases cleared after
the first course of treatment and 32% cleared after the second course.
The study group also looked for evidence of infections that would be
anticipated if T-cell counts declined in a generally immunosuppressive mode,
especially fungal infections, Pneumocystis, herpes simplex, and herpes zoster.
*************************************
Editors note: The following article from the Southern Medical Journal makes
reference to the possible connection
between cigarette smoking and psoriasis. I have chosen to include only a very
small portion of the information because
of the length of the study. The following is the web site address should you
desire to read the entire publication.
http://www.medscape.com/SMA/SMJ/2001/v94.n06/smj9406.14.stra/smj9406.14.stra-0
1.html
Tobacco Use and Skin Disease
Melody Vander Straten, MD, Daniel Carrasco, MD, Martha S. Paterson, MD,
Monica L. Mccrary, MD, Diane J. Meyer, MD, Stephen K. Tyring, MD, PhD,
Galveston, Tex [South Med J 94(6):621-634, 2001. © 2001 Southern Medical
Association]
Abstract
Background The primary objective of this review is to evaluate the
mucocutaneous manifestations of tobacco use.
Methods. Computerized literature searches were conducted for English language
articles related to skin/mucous membrane disease and use of tobacco. The
primary criterion for assessing data quality and validity was the
demonstration of a causal relationship between tobacco use and skin/mucous
membrane disease.
Results. This review of the literature shows that a number of disorders and
diseases of the skin and mucous
membranes are related to tobacco use.
Conclusions. Since millions of persons use tobacco despite its well
publicized relationship to increased mortality, knowledge of the
mucocutaneous morbidity associated with tobacco use may help physicians in
counseling their patients.
Psoriasis (A paragraph taken from a section of the study)
Many researchers have shown a relationship between smoking and psoriasis,
especially palmopustular psoriasis. O'Doherty et al[21] showed that
palmopustular psoriasis was associated with a high prevalence of smoking. In
addition, Mills et al[22] showed that in plaque psoriasis, there was a
significantly higher prevalence of current smoking (46%) as compared with
matched controls (24%), and more patients with psoriasis had smoked before
the onset of psoriasis (55%) as compared with controls (32%). Finally, the
daily consumption of cigarettes correlated with the risk of developing
psoriasis, with the higher number of cigarettes smoked (more than 20
cigarettes per day) being associated with greater risk. This was confirmed by
Poikolainen et al,[23] who found that among psoriatic women the mean number
of cigarettes smoked was 8.6 compared with 4.7 for controls. It should be
noted that some treatments for psoriasis are flammable and therefore may pose
a danger to smokers.
Key Points
Dermatologic effects of cigarette smoking include facial wrinkling, facial
gauntness, complexion color changes, decreased skin moisture, yellowed nails,
harlequin nails, halitosis, nicotine stomatitis, and skin burns. Indirect
effects of cigarette smoking include poor wound healing; psoriasis;
atherosclerotic peripheral vascular disease; Buerger's disease; Raynaud's
disease; diabetic foot disease; oral yeast infections; condyloma acuminatum;
and cutaneous findings in HIV and AIDS, Crohn's disease, and malignancies.
Recognition of dermatologic signs of tobacco use can be a clue to many of the
serious underlying systemic diseases associated with smoking and also with
use of smokeless tobacco.
************************************
TB Test Required For Arthritis Patients Wishing To Take Remicade
August 16, 2001 WASHINGTON (AP) - Rheumatoid arthritis patients must be
tested for tuberculosis before they begin taking a treatment called Remicade,
the drug maker and the government announced.
Patients using Remicade are at least four times more likely than average
Americans to get active tuberculosis, the Food and Drug Administration
estimates. The problem: Apparently the drug suppresses users' immune systems
enough that if they unknowingly carry the TB germ, the respiratory illness
can suddenly flare up. The warning is serious because untreated, TB can kill
- and it's also an airborne illness that these patients could spread to
family and friends.
Worldwide, 88 cases of tuberculosis have been reported among the estimated
170,000 people who have tried Remicade, FDA's Dr. Bill Schwieterman said
Wednesday. Fifteen of those people died.
Some 2 billion people worldwide are infected with TB and risk developing an
active case of the disease. In the United States, TB cases dropped to a
record low of 16,377 last year. But the illness is a continuing threat here,
with increased foreign travel and immigration from countries where TB is
common.
Rheumatoid arthritis afflicts more than 2 million Americans when their immune
systems go awry and attack their joints, causing severe swelling, pain and
stiffness.
Remicade is a bioengineered drug that roams patients' blood to sop up an
immune system protein called tumor necrosis, a factor responsible for much of
the swelling.
But that immune suppression, so important in fighting rheumatoid arthritis,
can leave users at a higher risk for serious infections. Remicade's label has
long carried warnings about various infections, but it now will carry a boxed
warning in bold type about the TB risk - the strongest warning possible for a
prescription drug.
The warning doesn't say people should stop using Remicade. The risk of
activating latent TB appears highest in the first three to six months of use,
so doctors should carefully evaluate those patients, Schwieterman said.
But before prescribing Remicade to a first-time user, doctors should test for
TB - it's a simple skin test - and treat TB carriers, the FDA concluded.
Manufacturer Centocor Inc. will send letters to thousands of doctors who
prescribe Remicade, both for rheumatoid arthritis and the bowel ailment
ailment Crohn's disease, alerting them to the warning.
A similar rheumatoid arthritis treatment called Enbrel also suppresses the
immune system and carries warnings that users face the risk of serious
infections. But so far, Enbrel users don't seem to face a special TB risk,
Schwieterman said. Copyright 2001 The Associated Press. All rights reserved.
*************************************
FDA Advisers Endorse Arthritis Drug
August 17, 2001 WASHINGTON (AP) - An experimental treatment for rheumatoid
arthritis moved a step closer to the market, although studies show it
promises just modest effectiveness. Advisers to the Food and Drug
Administration recommended on a 6-2 vote that Amgen Inc.'s Kineret be
approved. Studies found that about 15 percent more patients who took Kineret
than who received a dummy shot saw improvement in joint swelling and pain.
Other treatments sold today come with higher effectiveness rates. But experts
note that those drugs don't help everyone so additional options are needed.
Kineret, known chemically as anakinra, works differently than other
therapies, by blocking a protein called interleukin-1 that is one cause of
the swelling associated with arthritis.
Side effects included irritation at the drug's injection site and a small
risk of serious infection.
The FDA is not bound by its advisers' recommendations but typically follows
them.
Copyright 2001 The Associated Press. All rights reserved.
************************************
Editors Note: Because some of our members also fight the battle of coronary
artery disease, (besides psoriasis and psoriatic arthritis), I have included
the following article about antioxidants and lipid lowering medications. My
own
intimate involvement with the subject began in 1989. I had a heart attack,
discovered I have CAD which runs in the family, had my last cigarette after
35 years, experienced 7 angioplasties and 4 stents over 8 years, lost 25
pounds through diet and exercise, started daily vitamin therapy and lipid
lowering medications, and made some other lifestyle changes too. So this
subject is very near and dear to my heart. No pun intended of course.
Antioxidant Supplements Reduce Benefits of Lipid-Lowering Drugs
MedscapeWire August 10, 2001 By Hong Mautz New York - Taking antioxidant
vitamin supplements with 2 substances commonly prescribed to lower
cholesterol can sharply diminish a key beneficial effect of the therapy,
warns a new study. Some experts say these latest negative findings about the
popular supplements strongly suggest that the vitamins should not be used to
treat or prevent heart disease.
Researchers examined nearly 150 people who had both coronary artery disease
(CAD) and low levels of high-density lipoprotein (HDL) cholesterol. They were
given niacin (vitamin B3) and simvastatin.
Close to half of the subjects also were given a cocktail of antioxidant
supplements that included vitamins E and C, beta-carotene, and selenium.
Rather than helping patients with CAD, however, the antioxidants limited the
effectiveness of the niacin-simvastatin combination.
"We found that there was an adverse interaction between the antioxidant
cocktail and the lipid-lowering therapy," says Greg Brown, MD, PhD, co-author
of the study, which is published in the August issue of Atherosclerosis,
Thrombosis, and Vascular Biology. "The adverse effect on HDL appeared
specific for the HDL2 component, which is responsible for most of the
risk-reducing benefits of HDL."
After a year of treatment, the combination of simvastatin and niacin with the
antioxidant vitamin supplements increased HDL2 by 15% compared with 60% in
patients who did not receive the supplements.
"There is a substantial reduction in the rise of HDL2, the most protective
component of HDL," says Brown, a professor of medicine in the cardiology
division of the University of Washington in Seattle. "The effect is
detrimental when antioxidant vitamins are taken with the lipid-lowering
drugs."
In an editorial accompanying the study, Lewis Kuller, MD, DrPH, professor and
chairman of the Department of Epidemiology in the School of Public Health at
the University Of Pittsburgh, Pennsylvania, says that physicians should be
cautious about promoting antioxidant vitamins in patients with CAD.
"All the hype about antioxidant vitamins being a big winner in preventing
heart disease is totally unproven," says Kuller. "For people who are on
lipid-lowering drugs such as niacin, a combination with vitamin E is not a
good choice." Only a diet rich in antioxidants has been proved to be
associated with a low risk of CAD, he says.
"People who take vitamins are a highly selected group of individuals who are
interested in their health, so they often don't smoke, they exercise and
weigh less, and they are often better educated," explains Kuller. "That may
be one of the reasons they are healthier: It doesn't have anything to do with
taking vitamins."
The American Heart Association does not recommend using antioxidant vitamin
supplements to maintain or increase cardiovascular health; instead it
recommends eating a variety of foods daily from all of the basic food groups.
************************************
Cholesterol Drug Warnings Urged
August 21, 2001 WASHINGTON (AP) - Nearly two weeks after a popular
cholesterol-lowering drug was pulled off the market for causing deadly muscle
destruction, a consumer group charged Monday that five similar medications
have killed an additional 81 people.
Public Citizen petitioned the government to force manufacturers to give
special warning brochures to the millions of Americans who take those
medicines - statins - telling them to quit the pills at the first sign of
muscle pain or weakness.
Statins dramatically lower cholesterol and reduce patients' risk of heart
attacks.
"Most people taking these drugs aren't aware that they could sustain serious
muscle damage and could even die," said Dr. Sidney Wolfe of Public Citizen's
Health Research Group.
"Serious muscle and kidney damage, and potentially death, may be averted only
if the patients taking statins stop the drugs at the first sign of muscle
pain or weakness," Wolfe wrote the Food and Drug Administration Monday.
The FDA disputed Wolfe's death count, saying its own investigation last year
uncovered just 18 deaths that could be linked to the five statins on the U.S.
market - Lipitor, Mevacor, Pravachol, Zocor and Lescol.
But the agency will consider Wolfe's request for stiffer warnings.
Pfizer Inc. already has asked the FDA to approve a brochure written in
layman's language that would accompany every bottle of the top-selling statin
Lipitor, explaining the risk.
Wolfe's petition comes almost two weeks after one statin, Baycol, was pulled
off the market when the FDA linked it to 31 U.S. deaths from a side effect
called rhabdomyolysis. That's a rare but life-threatening condition in which
muscle cells are destroyed. In severe cases, it leads to kidney failure.
Every statin has been linked to rare reports of a muscle side effect, and
their labels carry that warning.
Wolfe analyzed FDA records to uncover 772 cases of rhabdomyolysis since 1997
among the six statins sold in this country. Half - 387 cases - were caused by
Baycol alone, explaining why Bayer pulled it off the market.
But Wolfe said he found another 385 rhabdomyolysis cases among users of the
other five statins still sold, including 81 deaths dating back to 1987, when
the first of those drugs hit the market.
That's still a rare risk, considering 8 million Americans are estimated to
use statins. But Wolfe argues that severe muscle destruction and death are
preventable if patients are aware of the early warning signs.
He urged the FDA to put stronger warnings on the statins' labels, to write
every U.S. physician telling them about the risk, and to mandate that every
patient get a brochure with each bottle telling them to stop the pills and
call a doctor if they suffer muscle symptoms.
A closer look at the FDA's reports shows duplicates and patients who actually
died of other causes, leading federal health officials to link just 18
rhabdomyolysis deaths to statins during an investigation last year, said
FDA's Dr. John Jenkins.
Merck & Co., maker of Zocor and Mevacor, says it provides Zocor users a
layman's explanation of the muscle side effect on its Internet site.
Bristol-Myers Squibb is seeking to capitalize on Baycol's departure with
full-page newspaper ads of Pravachol that mention the muscle risk, but
company spokesmen didn't return calls seeking comment Monday.
Lescol-maker Novartis maintained the risk is small and that patients are
appropriately warned. Copyright 2001 The Associated Press. All rights
reserved.
************************************
Communication Needed to Prevent Statin and Other Drug Side Effects, AHA Says
August 24, 2001 By Deborah Flapan - from Medscape News & MedscapeWireNew York
-
The American Heart Association (AHA) said this week that more open dialogue
between doctors and patients is needed to head off the appearance of
dangerous drug side effects, such as rhabdomyolysis from statin therapy. The
statement came in response to a recent petition filed with the US Food and
Drug Administration (FDA) to require "black box" warnings, the strongest
warning the FDA can mandate, on all of the cholesterol-lowering drugs. Public
Citizen, a consumer advocacy group, filed the petition earlier this week,
soon after the statin Baycol (cerivastatin) was pulled from the market
because of reports of rhabdomyolysis and deaths related to the muscle
disorder.
"We know that the FDA looks carefully at adverse drug reactions to determine
if special warnings or labels are warranted," said Sidney Smith, MD, Chief
Science Officer of the American Heart Association. "After careful review of
the available information on the statin class of drugs, the FDA should be in
the best position to determine whether special labeling will be effective."
Smith encouraged open communication between physicians and their patients.
"Doctors should warn their patients to be on the watch for potential side
effects of any medication. And patients need to take the initiative and call
their physician if they experience an unusual side effect. Appropriate labels
can also be a valuable tool in patient education."
In the case of statins, patients should watch for muscle aches and pains,
dark urine and other signs and symptoms as noted by the FDA and the package
insert included with the medicine.
The AHA emphasizes that lifestyle decisions such as diet and exercise should
be the foundation for strategies to lower cholesterol, although statins and
other cholesterol-lowering drugs can play an important role in overall
cholesterol management.
"In general, we don't think that patients should stop taking medications
without talking to their physician. If a patient is experiencing side
effects, the physician can often switch the patient to a different statin or
other medicine that will continue to manage their cholesterol without the
side effects," said Smith.
Editors Note: In the last two weeks there have been an extraordinary number
of medical articles on my web sites, about cholesterol lowering medications
and possible side effects. I would personally encourage you to discuss this
information with your own physician. I most certainly will be, at my next
cardiologist and rheumatologist appointments.
************************************
Health News to Love: Chocolate Is Good for You
By Patricia Reaney-Reuters - GLASGOW, Scotland (Sept. 3)
Good news for chocoholics. The treat favored by millions not only tastes
delicious but is healthy for you, American researchers said on Monday.
Chocolate contains compounds called flavonoids that can help maintain a
healthy heart
and good circulation and reduce blood clotting -- which can cause heart
attacks and strokes. "More and more, we are finding evidence that consumption
of chocolate that is rich in flavonoids can have positive cardiovascular
effects," Carl Keen, a nutritionist at the University of California, Davis,
told a science conference. "We not only have observed an increase in
antioxidant capacity after chocolate consumption, but also modulation of
certain compounds which affect blood vessels."
Antioxidants are substances that help reduce the damage of cancer-causing
charged particles in the body. Fruits, vegetables, nuts and whole grains are
high in antioxidant vitamins such as C and E.
NOT ALL CHOCOLATE CREATED EQUAL
Flavonoids in chocolate are derived from cocoa, which is rich in the
compounds. Research has shown that a small bar of dark chocolate contains as
many flavonoids as six apples, 4.5 cups of tea, 28 glasses of white wine and
two glasses of red. But Dr. Harold Schmitz said there were variations in the
levels of flavonoids in chocolate and cocoa products depending on the
production process, in which many flavonoids are destroyed. "All chocolates
are not created equal in regards to flavonoid content," Schmitz, a scientist
with confectionery maker Mars Inc., told a news conference.
Flavonoids are thought to reduce the risk of cardiovascular disease, the
number one killer in many industrialized countries, by reducing platelet
aggregation -- when blood platelets combine into a sticky mass and form
clots.
Keen and his colleagues measured the impact of chocolate on platelets in the
blood in 25 volunteers. They presented their findings to the British
Association for the Advancement of Science conference in Glasgow. The
researchers collected blood samples from volunteers who ate 25 grams (0.9
ounces) of chocolate with a high flavonoid content and other volunteers who
ate bread. They took blood samples from both groups two and six hours after
they ate the chocolate and bread to measure their platelet activation.
Volunteers who consumed the chocolate had lower levels of platelet activity,
which would reduce the probability of having a blood clot. The scientists
found no change in the group that ate the bread.
Keen said the results of the study support earlier research showing that
cocoa acts like low-dose aspirin which helps to reduce blood clotting. But he
warned that eating chocolate should not be substituted for taking low dose
aspirin because they work through different mechanism in the body. "These
results lead us to believe that chocolate may contribute to a healthy,
well-balanced diet," Keen added.
**************************
Thanks again, and please send your comments and suggestions.
Jack Nicholas - Cornishpro@... (A Big Fan of Chocolate)
Issue 2001 9/08-2

progression of PA

2008-01-18 09:39:30

Is there a recognized progression to PA for most people, or does it
tend to be stable? In my own case, it seems to wax and wane, but
gets somewhat worse each time it flares up. I'm wondering what the
next stage will look like.
Jed

MTX and other drugs

2008-01-17 17:33:57

Newbie question:
I've read that NSAIDS can increase the toxicity of MTX. My doctor didn't
advise me on this issue, so I'd like to ask the list:
Do most of you take an NSAID regularly with MTX?
I started taking MTX by itself for a couple of months, but find that taking
vioxx along with it helps with the stiffness much more effectively than MTX
alone.
Thanks!
Kristin Boice

reply tip

2008-01-17 15:14:00

the question was asked about how to reply without the entire message
being added onto the reply.
After hitting "reply" the page you write on will have the post you
are responding to ....hold the left button on the mouse downand
highlight what you don't want repeated and then hit the delete key on
your keyboard. This works if you are replying from the website. If
you are replying from home you might need to change your settings to
not automatically include the post you are responding too...PatB

New Member

2008-01-17 13:39:53

Hi folks just joined your discussion group not sure if I am in the
right place but hope you can help. My brother in law is a life long
sufferer of Psoriasis and last year he was on some drug that is
usually used for cancer treatment ( I dont know the name of it) He
was rushed into hospital in January with breathing problems that are
now thought to be caused by taking the drug. They have put him on
Methotextrate (sorry not sure on spelling) Do any of you have any
experience of this drug and if so did it affect your breathing.
Sorry to invade such a sensitive group even though I am a non
sufferer it is in the family and I have every sympathy with you all.
Lynn

MTX/alcohol

2008-01-17 00:40:21

Wow. I'm the one who's rheumy said it was o.k. to drink up to 4 drinks per
wk. while on MTX - but it sounds as though there is huge disagreement with
that. I may need to do some research on this - and on a new rheumy,
perhaps!
I have another question about MTX - I've recently develped a pretty bad
cold, and am wondering if I should stop MTX while I have a cold, since it
lowers immunity. I'm planning on asking my doctor as well, but would still
like the opinions and experiences of those on the list who have been sick
while taking MTX.
Thanks,
Kristin Boice

Re:Metho injections- # and size

2008-01-16 20:08:09

From my own personal experience and that I have gleaned from over the three
years of listening to over 1000 members by now who have come and gone or come
and stayed...the higher dose tends to be 50 mg. of Metho and that easily
fits into a 2 CC syringe with a nice thin needle. I forget the number on the
needle here in the US-but ask the doc or pharmacist for the nice thin one
that will be long enough to go Intra muscular since that is the clincher.
Never any need for more than one shot a week!
Michelle
Ps-There has never been any trouble from me about sharing how we gain
spiritual strength to make it through the day dealing with this damned
disease. Pure Proselytizing is easy to see and it has never occurred on the
list..so I say calm down every one and lets get a long again.
Michelle, group founder

mtx side effect?

2008-01-16 16:45:34

Hi, all. I just started mtx a month ago and by and large have been
somewhat worse, except for a few days when the stiffness seemed less
(it's back now). I know that it takes a while for mtx to kick in, but
it seems also to be giving me problems with feeling itchy all over--
has anybody else had this? I know what the "official" side effects
are, but what have you all experienced? It seems to me that often the
side effects the drug insert tells you about, and the actual side
effects real people have, are two VERY different kettles of fish.
Sarah

MsContin, MSIR, and Duragesic Patch

2008-01-16 06:49:53

MsContin is Morphine Sulfate Continuous Release over
12 hours. MSIR is the Immediate release form over 4 hours. Duragesic Patch
is a medication called Fentanyl which is a synthetic morphine and as strong,
the patch is supposed to be applied to your skin and stay there for three
days giving relief. My personal experience has been that it only lasts 2.5
days for me, but it does work well. It comes in varying doses from 25 to
50,100. The MSContin and MSIR come in 15 mg on up dosages (15, 30, 60). I
have found MSContin very effective and especially helpful for bedtime use. If
I want to go out at all driving, I must skip the am dose and get behind the
pain a bit in order todo my business in town, but if you must drive you must.
Otherwise it works wonderfully if you stay home and take it every 8-12 hours.
Michelle
I switched to taking MSIR for Severe migraine because I am contraindicated
from taking the newfangled migraine shot or pills being on a hefty
antidepressant. It seemed more sensible to me and my doctor to use the MSIR
for the migraines and "breakthrough"pain that occurs occassionally as you all
know when you are having a hell of a flare. Rather than taking two kinds of
pain meds- it seemed safer to stay in the same family.
Michelle

S,A,D, / P.A.

2008-01-16 06:18:47

Hi Bryna.
I've got both but have had the seasonal affectiveness
thing a heck of a lot longer than I've had PA. Never
feel like getting up, be it winter or summer. But
there is a difference in the summer from the sunlight.
It's never made a difference in the psoriasis or with
the arthritis, though. The sunlight just seems to
help a little with the depression. But my better
half? In the summer when he starts getting a little
too hyper or like his nerves are getting the better of
him, I make him go for a walk. (Heck, I should get
off my duff and go with him.) It makes a noticeable
difference in him. The sunlight turns him into
Superman. Me? I feel more like a cat stretched out
on a window sill, just soaking up all that solar
energy and just basking in it.
Dianne
=====
A clean desk is a sign of a cluttered desk drawer.

our group email addresses

2008-01-15 17:35:08

Group Email Addresses
For more information: mailto:CTNATIVE@...

MTX/alcohol

2008-01-15 15:12:36

My rheumy said I could have up to 4 glasses of wine per week (not all on
one day!), but I usually only have about a glass a week. So far, so good.
(I'm on 10 mg, of MTX per week)
Kristin Boice

MSContin

2008-01-15 13:07:40

Could someone tell me what MSContin is. I've noticed people talking about it. I
have been on Oxycontin for some time, but my rheumotologist is taking me off of
it, as he thinks it may be taken off the market because of the over-dosing
problem. But, I really think I need something to replace it with.
Thanks, Cindy

S.A.D. or PA?

2008-01-15 02:10:03

Hi everyone,
I read an article (re: whether or not rheumatoid symptoms are
seasonally affected) and it makes me wonder. For several years, I've
experienced what I thought might be S.A.D., seasonal affective
disorder--hard to get up in the morning, malaise, perhaps a little
depression during the fall-winter months.
Now I'm wondering: Could these symptoms have actually been PA and not
SAD? The Disalcid seems to greatly alleviate the malaise and morning-
stiffness/hard-to-get-up-ness (as it were)so it's got me thinking...
I don't know whether this is a chicken/egg situation but my mood also
has improved greatly and I'm back exercising again (which probably
also helps in its own way). :-)
Has anyone else has these experiences?
Thanks,
Bryna

new diagnosis, new to site

2008-01-14 19:44:37

My name is Julie Oliver. I turn 31 this month. Have had psoriasis
for 17 yrs and was diagnosed PA 4 mos ago. I have been reading posts
for awhile to get a feel for the thing as have never been involved in
online group before. History looks a lot like everyones. Was
diagnosed juvenile arthritis at about 12. (dr. took my "leg cramps"
as some of you put it a little more seriously I guess.) But my
experience with arthritis has been up and down and only recently
completely immobilizing. Used to just predict the whether and have
some aches and pains. In April I noticed upper joint in finger
hurt. After a month decided I must have broken it but didn't know
how. With 2 kids you are just busy and seemed odd, but not out of
question. Quickly it spread to entire hand then next hand then back
and knee. This all in a 2 month time period. Primary care dr gave
me cortisone shot when 1st noticed the hands not responding to anti
inflammatory meds. Then after 1 wk pain right back. Put me on Vioxx
and sent me to Rhumy. I had feeling about this as with P had
researched fully and come across PA and wondered if this may be my
arthritis. So mentioned P to rhumy and he confirmed. Sed rate high,
etc. Take Vioxx only on REAL bad days, been on Sulfasalazine for over
2 mos. and it seems to finally be working. (Long time to kick in) I
had researched different opinions and really tried to live with pain
(re for not taking Vioxx) 1. because although I do take meds, not my
favorite thing to do, 2. I saw a lot of documentation on letting the
pain be your guide to how much exercise to do. Anyhow, I am
wondering several things and may continue to communicate as looks
like you all know what it's like to not have people realize that your
mood, depression, attitude, pain, life in general really sucks
sometime because of this and would like the "lifeline" so to speak.
My pain is low right now so mood is up. Interested in knowing if
anyone else is taking Sulfasalazine right now and how much. I take
folic acid as well. How long should I expect to be on it? When
asked Rh this question, he said some patients of his have been on it
for 25 yrs. Said he would re-evaluate me in 6 mos for that. I had
Guillians-Barre Syndrome when I was 20 yrs old. Anyone else??? P is
also not on joints as most that I see documented is. Bad on lower
legs and stomach and etc. Pitted nails. Also real wierd, when the
hands 1st got bad (which was the 1st time arthur had set into my
hands) I got little bumps all over hands. Dr. said looks like may be
warts caused by virus and they'd go away on own. Still have a few.
never had warts before. When digits get "sausage-like" seems to
flare them up again???? Anyone else. hey, whoever Jack is, thanks
for taking the time to do the newsletter for everyone. A lot of
work, I am sure. But much appreciated. Anyone know of good Rhumy in
St. Louis, St. Charles MO area? Thanks and sorry soooooooooo long.
Julie

PA

2008-01-14 18:28:47

I have had psoriasis for about 15 years.
This past fall (2000) I began having pains in my hips.
By January 2001 I got my first cortizone hip injection in my left hip.
By April 2001 I got an injection in my right hip.
I am now set for both hips to be injected this Friday (09/07/01)
I am at the point that every step I take I am in pain.
I have been waiting for 3 weeks for my Dr. to read the blood work. He
has not said definitly that I have PA, but he has agreed that that is
probably what it is. I have been to 4 Dr. this year, and Rhumitoid
Arthritis has been ruled out through blood work. I am in the Atlanta,
GA area. Is there anyone out there close to me. I have been getting
so depressed the past few months. I am constantly in pain.
Not sure if this is just me, but when I satnd the pain is not so bad.
Whern I sit it gets worse, but when I lie down I can not stan it. I
lay awake til 2:00 am to 3:00am every night until I finally pass out.
I have to get up at 5:30am to 6:00am to get my son ready for school
and me ready for work. Is this common for most sufferers, or is it
just me?
I hope there is someone out there listening.
Thanks,

Sorry, Patty

2008-01-14 10:30:21

Patty,
My apologies for misspelling your name!
Bryna

My Story

2008-01-14 08:03:18

Hello, My story is differnt than most in that my family Dr. diagnosed
my problem on the first visit. (I have had psoriasis for 10 years and
PA for about 8 months.) I guess after looking at all of the
psoriasis. My nails must have been the give away. I tried several of
the arthritis medications Vioxx, predisone, ibuprofen, etc. He said I
needed something more potent that he would rather a RH. prescribe.
I told my RH. what medications that I had tried. My RH said I had PA
and wanted me to take 1800 mg a day of ibuprofen, to which my family
Dr. said was candy and in that I had already tried that and needed
something else. Later in that same day I went to see my Dermatoligist
and after seeing my nails, swollen and very red left thumb, right
toe, she immediatly put me on 20 mg MTX and recommended that I not
take Ibuprofen with it. My pharmisist also said not to combine the 2
medications. That confused me because I've read in the group where a
lot of people have taken both. All of these trained professionals
have me confused. I'm only on MTX and after 5 months I am psoriasis
free but my hands and feet are fair worse from the PA.
Question 1. How long should I wait to try something else.
Question 2. What kind of drinking is bad when on MTX.
Question 3. Does anyone know of a connection between the Adkins diet
and PA. (have been on the diet for approx. 2 years)
Daryl

religion in the posts/purpose of the group

2008-01-14 02:57:49

Does anyone else on the list find it ironic that those who don't want
religion discussed on the list have started this huge long argument about
religious posts?
I personally don't see the need for discussion of the purpose of the list
AGAIN. I think most agree that barring offensive or rediculously frequent
posts most posts are welcome. I'm not religious, and don't
agree with many who are. So I simply scroll past em. I've seen this
discussion pop up at least twice, and it really never gets resolved.
Just my opinion...
Kristin Boice

My Story

2008-01-13 15:31:11

Hello Everybody!
My name is Charlene. I am an RN and 52 years old. I started
experiencing symptoms of Psoriatic Arthritis about 7 years ago. I
thought I was going to out of my mind from the fatigue and the effect
it had on my life and daily activities. I'd go to doctors and complain
about the severe joint pain, swelling in my face around my eyes and
the fatigue. All the docs I went to would do tests for RA and osteo
arthritis along with general blood chemistries and tell me the
"arthritis" tests were negative and labs showed I was as healthy as a
horse and was going to live be 95 (with a cholesterol of 185). Who
wants to be 95 if you can barely get through a whole day???
I found a wonderful,kind, empathetic rheumatologist in Scottsdale, AZ
who agreed with my suspicions of having PA. He's even done the HLA
test which I have come back "screamimg" positive for PA.
Did you know that many of us complained of leg pains as little kids
and were worked up for RA which turned out to be negative? Also, those
leg pains were explained to be "growing" pains.
I have a 12 year old who also complains of pains in leg bones after
exercise which has been written off as having "growing" pains. I just
pray she doesn't come down with this awful disease.
I would love to communicate with any of you in the Phoenix area. We
can start by e-mail and then if you would like to converse on the
phone I'd love to talk to any of you.
I'm a single mom and dread thought of trying to begin a new
relationship with anyone since most people claim to be so "active". I
do what I can. My daughter and I do take Tae Kwon Do lessons.
Please excuse the typos- I'm a great nurse but a lousy typist!
Charlene

Purpose of the group

2008-01-13 11:59:39

Patty writes:
"I made the 'mistake' of sharing too many posts of a religious nature
in the past thinking that some in the group would appreciate what
encouraged me at times and was thoroughly chastised for it. Apparently
more and more individuals believe they can be all-sufficient without
support from anything/anyone of a superior nature, which saddens me."
Patty,
Please don't take the comments from myself and the other posters
personally. As I reread what had been written I did not see any attempt
to "chastise" anyone, (although some of the responders in support of the
religious comments seemed to respond more angrily). The issue is not
that one does not need the emotional support but the vehicle one uses to
get it. This e-mail group has been a fast, easy way to get current
information on the "science" of this disease. Jack's newsletter is a
perfect example of what many of us wish to get out of this site. (By the
way, thanks Jack. It's great!!)
The reason I brought up the Gillian issue was that her posts were truly
interesting, they were funny and I enjoyed reading them. As much as I
enjoyed reading them, they hindered the ability of many of us (myself
included) to glean the information we wanted quickly. I wish Gillian had
sent them to interested readers only rather than sending them to EVERYONE
on the list.
Personally, I am envious of those who can get physical relief from
emotional support of any kind. I wish I could. The point I tried to
make is that those who are interested in support (religious or otherwise)
would probably benefit from a more interactive setting: e-mailing back
and forth to others of similar interest. Those like myself (and the
others who posted) would rather read our e-mails quickly and post only
when we have information that can benefit others directly. The delete
key is not a viable alternative for those who get 20+ e-mails in digest
form. We must scroll through every message. The benefit of the digest
form is that I can leave every PA e-mail unread until I have the time to
sit and read them in their entirety.
In closing, it was never my intent to suggest that religion does not
have it's place in treating disease, it's only whether this is the proper
forum.
Barry
This e-mail created with 100% recycled electrons

more than one injection site?

2008-01-13 02:37:13

I don't see my Rheumy for another month, but thought of this question during my
latest injection yesterday... I'm currently injecting .9 cc of MTX weekly on top
of my oral medicines. I know bigger needles aren't a problem, but I'm curious to
know if there's a point a person may reach where they have to share multiple
injection sites (through the skin) for larger doses of medication. Also, has
anyone heard of any benefits to injecting a weekly dose of MTX into more than
one area of the body. Pardon my ignorance. Jim

read posts/delete posts

2008-01-12 19:56:17

Here is an idea, if you are not interested in the subject, then hit
delete. I would assume it is that simple. Thats what I do.
Sometimes I have 22 messages and I only read one. It's no big deal!
Jayne

Newsletter Process

2008-01-12 10:19:05

The newsletter will be sent in the next few days by Jack Nicholas (aka Mr.
MacArthur_ don't know how that name stuck in my head!- many apologies to
Jack!). Jack will send it in a large e mail to the list.
Thank you in advance to Mr., Jack Nicholas and remember that feedback to him
is much appreciated towards ongoing issues of new newsletters yet to be
released. Thanks to all in advanced. Your founder, with a hole in the head
when it comes to names lately, Michelle

re purpose of group

2008-01-12 08:17:34

hi all,
i have been thinking a lot about this issue since it all first came up, and how
i really
feel. personally, if a person wants to talk about their faith, whatever it is,
i don't mind. what makes me uncomfortable is quoting scriptures,i couldn't tell
you why,
but i guess it's because i have always been an introverted christian. i think
most
people are uncomfortable with in your face anything. i don't generally get into
public discussions about politics either. frankly it's not anyone's business.
i have learned a lot from this group about different medicines, and gotten
answers
about treatments, you know the ones you hear about and wonder if anyone has
tried it.
i think, that if someone wants to credit God with something, such as a
remission, or thank Him thats fine. or tell another member that he or she
will pray for them is fine. but lets stick to the topics, i know i pretty much
skip
over the scriptures, or advertisements, etc. i look forward each day to reading
the posts, if any new info is out there, if someone has a question i can answer,
and anyone has replied to one of my comments.
if everyone sticks to pa, there shouldn't be a problem with censorship, or
offense to other religions, or nonreligions.
hopefully this will be the end of the hoopla, so that the posts can go back to
being about pa, or at least i pray it will! (sorry, couldn't resist)
last note, i hope everyone appreciates the fact that we were all able to
express our opinions on this matter without fear of reprisal. everyone listened,
replied and hopefully, no one's feelings were hurt. i don't think anyone said
anything
with malice.
i'm off my soap box now!
have a safe holiday
susan in ohio

posts for everyone

2008-01-12 04:33:15

Jeez a hate to get into this topic again concerning the content of
our posts. Someone mentioned Gillian Rowes' tendency to wonder off

Sausage Fingers and Joint Damage

2008-01-12 00:25:39

I was wondering if anyone can give me insight as to PA
, Sausage Fingers and Joint Damage,I am taking Mtx,
Arava, Voltaren. And would like to know if that is
suppose to stop Joint Damage. I feel as if my fingers
have swollen and joint damage is occuring.
Judi aka daystar
=====
Be ye therefore followers of God, as dear Children:
And walk in love, as Christ also hath loved us, and hath given himself for us as
an offering and a sacrafice to God for a sweetsmelling savour. Ephesians 5: 1,2

Purpose of the group

2008-01-11 20:39:20

I hate to sound like some old sage, but I've been on this group almost
from it's inception (back when we counted members in two digits).
Brynae's comments were well written and not the least bit inflammatory
but it seems if you mention God or politics you're in for a fight. Those
of you who were around for the Gillian debacle will remember that the
basis of the problem (as it is now) was that Gillian's stories were cute,
they were humorous and really down home. The problem was that the
majority of the group was interested in quick insights into dealing with
OUR disease. While delightful, Gillian's stories were too long, too
frequent and took too much time to sift through before you found a post
that gave you the medical information that you were looking for. Big
fight starts, nasty things are said, Gillian and her friends are gone and
the group proceeds on a more "clinical" level for a year or so. Now it's
religion rather than Aunt Tillie's rheumatism.
I think this group needs to decide again if we are going to be a clearing
house for information on OUR disease and the variations in treatment or
we are going to be a support group where we can provide emotional
support. While these two approaches are not exclusive, we ARE seeing a
greater influx in the religious support side and less of the clinical
medicine side of posts. Is this bad? No, not if that is what you are
looking for. If religion works for you than by all means go for it.
Traditional medicine has not worked for