Rheumatic

Well I'm 49 and you all know I live in Florida..a little town called Port
Richey about an hour north of Tampa. I lived on and off in Naples, Florida
(summers) and grew up in Indianapolis, In. Take care, Fran

So yesterday, I went to my doctor and asked her to refer me to a Rhumy at
the Arthritis Society here in Vancouver. She was quite reluctant to do so.
The conversation follows:
"Can't you just deal with Dr Verdejo's bad beside manner and just take the
treatment?" says she.
"When I have a doctor, I expect them to have care and concern when dealing
with me. If I go to my doctor concerned about a side affect, I want
information, and reassurance, not mollycoddling and patting on the shoulder,
and snap diagnoses. I don't appreciate my worries being dismissed as
unimportant, and nor do I appreciate being diagnosed as 'depressed' when the
doctor had only been talking to me for 5 mins. I don't feel comfortable
taking my problems to my specialist, thus I request a new one."
"Are you sure? All specialists are really unconcerned, and don't have very
good bedside manners, they're just there to diagnose and treat, not
caregive"
"I pay my medical every month, and I expect my doctor to be involved in my
illness so we can work together to find a useful and effective program. If
I'm going to my specialist with concerns that a side effect I'm experiencing
is not acceptable to me, and there are other therapies available, I would
expect that specialist to go over the other options with me so we can choose
one that will work for me. Being almost incoherant due to lack of sleep
caused by what I feel is the meds is not an acceptable solution for me. I
work a high paced job, and have no time for incoherancy. Pardon me if my
expectations are too high, but I will not go back to Dr Verdejo."
"So you're sure. You won't just deal with his methods?"
"Yes. I'm sure. I will not go back to him. Please make a referral to Dr
Klinkoff at the Arthritis Society for me"
"Fine"
She gave me a perscription for Naproxen, since it didn't affect my sleep
last time, and that was it. I left. She didn't seem too happy. I think she
felt like I was some sort of dopey idiot who didn't know anything about
anything, but by the end of the visit, she seemed frustrated that I was
holding my ground and making her do more work. Man I'm really starting to
hate the medical profession. They're supposed to be there to help, but all
they are doing is shuffling patients around without due care and concern as
to whether they are actually getting help or not.
When I arrived home, I had an instant message waiting for me from someone
from these boards, asking me if the doctor I had been describing was Dr
Verdejo, and indeed it was, I was shocked. Apparently she'd had a negative
experience with him as well, and confirmed that it was a good idea for me to
drop him. Well, if I hadn't already spoken with my GP yesterday and done so,
I certainly would have been doing it today.
Thanks again everyone, for encouraging me to not settle, and to go find
someone else. Hopefully the next Rhumy will be more understanding, and able
to be worked with. I don't take orders well, but I compromise really good :)
Crystal

Unless you are sensitive or allergic to antibiotics, your risk should be
much less that on any other med your doctor will try. That is why it is such a
win-win situation. See if you can get a copy of any of Henry Scammells
books.It will explain the protocol. "The Arthritis Breakthrough" is one of the
titles. Half.com (a division of Ebay) usually has used copies if you are
trying to be frugal.
Since dermatologists give teenagers Minocin for acne by the
thousands here in the United States, this drug has been thoroughly worked with
and
around for years with very few problems.. Side effects are rare and mostly
harmless. Your doctor or pharmacist will tell you what to watch for and make
you aware of possible problems. As long as you are not allergic you should
be fine, but like all meds it is good to be under a doctors supervision.
If your diagnoses is RA or one of the other immune diseases, Minocin may
work wonders. It did for me and now I am off all other meds even aspirin
for the most part!!! Without it I would most likely be in a wheelchair by new,
unable to do all the things I love. Thank goodness I tried this. Martha

Sue, I wish I had the address for the site, but I wrote in yesterday and posted
a website that the National Psoriasis Foundation has set up, to rate your
doctors. It is all done with total privacy. You can let your "pretty blonde
doctor" know what her patient really thinks of her! And you can rate your
rheumy and say the good things. They turn this over to the doctors, so they
will find out what their patients really feel about the quality of service.
Good luck.
Linda in Poulsbo, WA.
Hi Everyone,
I went to my GP yesterday for a checkup to be able to have my total
hip replacement next month. When I was in there I thought I would
get my anger off my chest since she wasn't able to diagnose my PA and
said it was gout two years ago...so I went through months of pain
while my finger I can no longer bend; thank God my husband's
insurance let me get a Rheumy on my own and he couldn't believe how
bad I was...after months it had gone from my fingers to my toes, hip,
spine, jaw. Anyhow she, the GP said the reason she wasn't able to
diagnose PA was because it is rare condition!! She said she had
never seen it and didn't think any GP in her group had seen it!! I
have a hard time believing this-just during my husband's family
reunion this summer two of his relatives had it. I told her my
Rheumy was only in the exam room for less than ten minutes when he
told me what I had...she said it was because he specializes in it so
he would know what to look for. I am still angry at her and it did
feel good getting some of this off my chest. She is right out of
med. school and is a pretty little blonde thing and acts so superior
to me-even one time I "caught" her rolling her eyes at her nurse when
I was telling her about the different areas that hurt...maybe if she
would have listened she would have gotten the diagnosis right. I
just feel that Drs. should be accounted for their actions. Thanks
for listening.
God Bless, Sue in Michigan.

Hey Martin :) Thanks for the encouragement.
I totally said that same thing when my thumbs started
swelling. "Arthritis is an old people disease, not a young person!
What the heck is going on???"
Funnily enough the place I work in, 4 out of the 10 employees here
have P. None of them have PA, but one has RA, but the docs aren't
sure it's actually RA, so I might have someone, in my OWN WORKPLACE
that also has PA! But I'm hoping not, for her sake. Since finding out
about my own PA, she said she's going to start asking her doctors
about PA now.
It's certainly nice to have people to talk to about this, and not
have to explain every detail every single time. It's great to have a
forum to discuss and compare.
Crystal

this is her son bjorn, thye went to do hip surgery she went into
comma, they do not know why, or what, they hav her on life support.
the yr doing everything they can to find out why.. please pray for we
mite loose her.... bjorn alberta canada

http://www.healthmarvels.net/
The site works for me. I just checked.
Karen

Carla wrote: ...not to mention my poor brand new matress!
First thing...get one of the zipper plastic covers for your new mattress. This
will stop any water/urine from damaging it. Sears, Target, K Mart, all major
department stores carry them and they are not expensive.
I think I would go ahead and make an appointment with a good urologist anyhow.
Why not go to someone who knows more about your problem? That would certainly
help find the cause of this.
Good luck. Linda in Poulsbo, Wa.

Live Chat:
Friday, November 19, 2004
Dealing with Depression
Psoriasis can have a severe psychological impact, leading many - 25% in a
recent National Psoriasis Foundation survey - to consider suicide.That number
may
shock those who don't live with psoriasis, but we know that depression -
driven in part by unpredictability and lack of control over this disabling
chronic
illness - can be par for the course.Our recent talk with Robert Reiner, Ph.D.
, provided many great suggestions for facing depression (including six steps
to help you overcome it!), but we realize that hearing it probably left you
with a few questions.Now's your chance to get the answers you need. We hope
you'll join us for an extended Q&A with our expert on psoriasis and
depression.If
you haven't already, listen to the talk with Dr. Reiner. Make a note of any
questions you have. You can submit your questions when you register and anytime
during the chat.Thenregister for the moderated chat.Our team will review your
questions and present them to Dr. Reiner so there won't be repeats or too many
off-topic questions. Moderation ensures the conversation will flow smoothly
and remain focused on your needs and concerns.We look forward to seeing you
there!
Register now
Date: Friday, November 19, 2004
Time: 4 p.m. EST (1 p.m. PST)
Location: On the Internet
Guests: Robert Reiner, Ph.D.
Faculty member of the department of psychiatry at New York University Medical
Center
Psychological consultant for a variety of corporations
Day of Event Link:
http://www.healthtalk.com/psoriasis/programs/11_354/index.cfm
Print out this e-mail to help remind you of this event.
How to participate:
It's okay if you haven't registered prior to the event - we'd still love for
you to attend. Here's how:On the Internet:
On Friday, November 19, 2004, approximately 5 minutes prior to the scheduled
program time (12:55 p.m. PST / 1:55 p.m. MST / 2:55 p.m. CST / 3:55 p.m. EST)
access the following Web address from any computer:
http://www.healthtalk.com/psoriasis/programs/11_354/index.cfm.You should check
your Web browser
compatibility before the chat. For details on which versions are supported, how
to
install and test Java and some general chat tips, please see
http://www.healthtalk.com/java.cfm.Thank you for taking part in this program.We
wish you and your
family the best of health,The Psoriasis Information Network Teamp.s. - We
encourage you to check out thePsoriasis Community message boards and join the
conversation on this and other topics.This program is supported through an
unrestricted educational grant from Amgen and Wyeth Pharmaceuticals.

Hi Bev
Has he ever been on any kind of Glucosamine along with a nutritional supplement
regime of all the required multi vitamins and minerals? Boy does the
Glucosamine work good for me. I know it is something natural and with no side
effects and can quit at any time. I also make sure I take lots of strong
antioxidants along with a good calcium/magnesium/vit D mix. That seems to do
the trick for me.
A lot of drugs we get put on only clog up our immune system making things worse
in the end. Not only that but they can be so addictive and you have to wean off
them so slowly. Sometimes too when you are taking more than one...they react to
each other cusing one or the other not to work. I was lucky though I caught
mine in the early stages and got my defense system built up early in the game.
It takes time.
I am building a website on arthritis as it is all around my family and some of
the tears and disabilities can be a lot to handle. Decided to take a course and
get to know how and why our bodies do this to us. :)) We certainly not for the
most part are born this way.
Will let you all know when it is ready for the web. Am also putting out a
monthly newsletter also on different topics. There are so many different types
(close to the 200) of arthritis and a lot with the same type of symptoms.
Am new to this site and hope to see you all around. Please feel free to email
me any time.
Julie
juliehope@...

Hi Leanne,
Sorry to butt in. I just wanted to say that I hope they can do something for
Owen to slow the advance of the disease down or even better stop it in its
tracks. He deserves something good to happen to him. He sounds like a very
courageous young man.
Good luck,
Martin

HI Guys,
Is this the article you're referring to? In weeding through my mail I thought
that this is what you're e-mail was addressing. I just bought a stretching DVD
the other day. My next step in the exercise project is to get the wrapper off
of the packet and open it up.
While I was away for 3 days I used the treadmill in the hotel and I must say
that I did feel better. While I don't have the strength and energy level to do a
lot of heavy hill climbing by adjusting the incline on the machine, I can see
that if I develop some discipline here I just might be increasing my energy
level. So this weekend I buy my bike and we'll see if I can stick with it and
slowly build up my time and energy by peddling.
Thanks!
Roni

I will be praying for your Mother to awaken from her coma. Please keep us
updated.
Deb
New Mexico
[Editor's Note: I am sure the entire group is praying for you and your family
during this difficult time. Kathy F.]

Hi ,
Well the site worked for me this time
Can't wait to start using them
Sure hope I'm doing the right thing just sending a check to a address I got
on the internet.
has anyone else bought from "healthmarvels" ?
actually getting on the site explained a lot like why there are always
different ingredients
I called my accupuncherist the receptionerist hadn't heard of them but was
very interested
can't wait to tell her if they help me . she said she had used the
foot bath & had acually concidered having blood work done befor & after to see
if it did reduse toxins
I just need some energy
wish me luck
bonnie in seattle

Highlights from our recent program
Psoriasis and Psoriatic Arthritis:
Updates from the National Psoriasis Foundation Annual Conference
Our August program with the National Psoriasis Foundation in San Diego
provided a rich overview and discussion of the dramatic changes in treatments
for
psoriasis and psoriatic arthritis. This is one of the best in-depth looks that
we've seen into the different varieties of psoriasis and issues ranging from
their emotional impact to the wide range of available treatments and their
plusses and minuses. Our panel of experts also addressed some valuable side
topics
thanks to the rich interaction from the in-person audience attending the NPF
conference and HealthTalk members who participated live on the phone and via
the Internet webcast.Whether you missed this event or simply want to review it,
a full transcript is now available. You can also find edited highlights,
complete with audio.Highlights include: Supporting Kids Emotionally
"I'm often struck that our youngest patients are some of our bravest and most
courageous. Some of my patients will say, 'You know what? Doesn't bother me a
bit. I just say to my friends, this is my skin, this is the way it is.' I
think we just have to support them in that too - just giving them good words to
say to their friends and the other kids in their class so that they know how to
respond to questions, [and] having teachers available to back them up when
that becomes necessary." --Dr. Abby Van Voorhees
Psoriatic Arthritis: The Goals of Treatment
"Someone who may have psoriatic arthritis can have a little bit of arthritis
just as they can have a little bit of psoriasis, or they can have terrible
arthritis that will actually destroy the joints, make them deformed,
nonfunctional and, of course, lead to disability. These last things, of course,
are the
end goal of what we want to prevent. So, the goals of treatment would be to
accomplish a number of things. First of all, immediately if we could reduce
someone's pain and swelling and stiffness, right away as you can imagine, that
will
begin to improve their function on almost a momentary basis." --Dr. John
Tesser
Methotrexate's Deadly Interactions
"With methotrexate, there's scarring of the liver that can take place. So the
guidelines that currently exist in this country are to actually have a liver
biopsy every few years when you are on methotrexate. Probably a bigger
problem, which isn't talked about as much is the effect it has on the bone
marrow. It
can literally wipe out your bone marrow. If you take it properly, it wouldn't
but the problem is certain things happen. I always will tell patients if you
are on methotrexate and you take any other medication or vitamin you have to
call me and ask my permission first. The problem is they never do. They'll tell
the physician they are on methotrexate and he'll give them an antibiotic. It
turns out that that combination can be deadly. In fact in every series of
patients treated with methotrexate there is a real death rate because of
instances
like that." --Dr. Mark Lebwohl
The State of Light Therapy
"More recently, in the last five or 10 years, we've begun to realize that
there's a particular wavelength of the broadband that probably had most of the
effectiveness and hopefully a little less of the troubling side effects. We call
that narrow-band ultraviolet-B phototherapy. We use them in a light box that
I think looks like a glorified telephone booth with light bulbs all around.
And patients, at least in my office, they're putting topicals on their skin,
sometimes it's just moisturizers, in addition to having their skin be exposed to
the lights. We do various combinations [of] the topicals in concert with the
ultraviolet light to try and maximize the effectiveness." --Dr. Abby Van
Voorhees
Topical Treatments
"The oldest treatments we use are tars and they are wonderful for highways
and roofs but a little messy for patients. The category that's probably used
most widely by patients is topical corticosteroids. An old rule was the messier
they are, the better they work. The first time you use topical steroids, they
work very well but as you continue to use them, they stop working. The medical
word for that is tachyphylaxis. What it means is that as you continue to use
particularly topical steroids, they simply don't work as well. They have other
side effects. In certain areas of the body, you get stretch marks. The skin
can become so fragile that every time you bang into something, your skin tears.
" ---Dr. Mark Lebwohl
The Importance of Exercise, Sleep
"Physical exercise is really important for everybody and for people with
musculoskeletal disease, it is particularly important. Stretching is critical.
You've got to keep muscles loose, toned, conditioned. Also, walking is a very
good exercise for those people that can do it, because it's probably the easiest
way for somebody who can ambulate to get cardiovascular and pulmonary fitness
involved. An exercise bike - that's a good way to do it too. Aquatic therapy
or swimming would be another way. The Arthritis Foundation has courses called
PACE, and the idea is to take and teach someone to utilize whatever energy they
have and then to use it in a measured fashion - not [to] go out and try to
run a whole mile when you haven't been running at all. The way to do it is to
learn what your capacity is, to utilize it, and do it in a measured fashion day
by day. Sleeping enough is important." --Dr. John Tesser
Other interesting topics include:
Treatments for psoriatic arthritis
Guttate psoriasis
The effects of air travel
Why the FDA didn't approve oral tazarotene
Alcohol - Can it trigger flares? We wish you and your family the best of
health,The Psoriasis Information Network Team

This is how my rheumatoid first started..... way before it became permenant
in certan joints. I proably continued this for 2 yrs .
cooky
AP 9 yrs

Susie in Michigan: Here is the message I posted earlier about "scoring your
doctor". Let me know if you are unable to access the site. I thought it was a
really valuable tool. Good luck. Linda
There is a website that the National Psoriasis Foundation has for rating/scoring
your doctors. It is very easy to do and the information is relayed to the
doctors. I thought it was well worth doing and think some of us on this list
might also like to do it.
The site is at www.drscore.com
Happy scoring. Linda in Poulsbo, WA.

Hi Katie,
I found out by having a routine chest xray in the Emergency room at the local
hospital. I had been complaining of having excruciating pain in every muscle of
my body and couldn't even roll over in bed. This pain started right after I was
put on a statin to reduce my cholesterol, so naturally I thought I had a lactic
acid buildup. My statins were changed, then reduced, but nothing helped.Two
years went by yet the pain kept increasing till I couldn't take another moment
and I asked, no cried, to my husband to take me to the ER. All tests prior to
that time were sero-negative for arthritis or anything else immune or otherwise.
It was a puzzle to everyone. They admitted me with double lobar pneumonia and
put me on IV Levaquine. An MRI & various Cat Scans of my lungs and an endoscopy
& colonoscopy two days later proved it was pulmonary fibrosis and not pneumonia
and impaired motility. From there, I advanced in my disease so fast. Raynaud's
set in, lost 40 lbs., diarrhea
continuously, became anemic and still no diagnosis except one doc thought I
might develop some autoimmune disorder down the line. Then I noticed my chest
skin got tight & shiny and tiny white pebbles started forming on my skin. My
forehead looked like I had a fading tan with light and dark patches, like when
your skin peels after a bad burn or tan. They called it pseudo-vitiligo. It
wasn't until I came back home and went to NYU for a full check up that I was
told I had S/D & R/A. This time my ANA was positive and high, anemia was bad and
I was still losing weight and my face started taking on a strange look and my
hands began to curl. The docs decided I should go on Methotrexate, Plaquenil,
Thalidomide, Humira, Remicade, steroids and chemo drugs. I was told I was
terminal and all they could do was treat the symptoms. I refused. My 40 yrs. of
nursing experience told me this was wrong. I'd seen too much devastation from
these drugs I lost my first cousin to
steroids given to him for Lupus. Besides life itself is a terminal illness.
So, I went to our vacation house in Fl. to be alone with my computer and found
an angel who introduced me to A/P at the Roadback.org bulletin board. Got on it
a month later. Every month for 7.5 month my symptoms began to subside and
disappear. Raynaud's & Itchies vanished. I was amazed. No pain, no more
anemia. Skin no longer tight & shiny and no tiny white hard stones forming on my
skin. The patchy colored skin remained. Before I knew it, I went from
bedridden to dancing. My lung capacity and function is showing some
improvement. They were the first to go and the last to improve. I am not yet
sure about whether or not my heart is affected. I have had about 7-8 yrs of
cholesterol buildup and 3 angio's, plus a cardiac ablation for Fib/flutter and
other irregular rythms. I'm wearing a monitor right now for 72 hr. These
irregular beats still come & go and can bring me to a stand still
real quick. My heart meds were recently changed again and I'm doing better. On
the outside, one would never know I have S/D or R/A. My new Rheumy thinks I
also have sero-neg sarcoidosis, so she calls it MCTD. My fingers are straight,
no pain, can open jars & cans and bend all the way over. Roll around the bed
w/o pain. No pain meds needed, nor exercize therapy needed. I've alway been
active. And still am again. I just turned 70 and I still work at nursing. Only
now I have a desk job and work part-time. We travel. I'm a smiler and a
jokester. I love people and always am having a good time. We have lots of
friends and party a lot, play music, sing and enjoy every precious moment we
have been given on earth as we consider our time here a gift. We also volunteer
for the scleroderma foundation and participated in the walkathon, and and black
tie gala raising money. We board and care for pups. We are Santa & Elf at
christmas time and do parties for children's
charities and go to hospitals & clinics. We did a huge charity for the
children who lost parents on 9/11 at a big firehouse in downtown NYC where we
live. We are always busy. We find that giving is the only way to receive. A
positive attitude is the most important of all cures. Lots of hugs & kisses,
plus petting animals is good for the immune system. I take 100 mg of Minocin
twice daily since 12/05. Started first month on 50 mg MWF and got ramped up a
month later to the full dose I take now. I recently went into pulmonary
hypertension during an echo stress test ( not a good thing to do) but I'm
working on getting that reversed too. I want to add my name to the list of
people who go into remission and hopefully one day be cured. Longevity runs in
my family, so I'm hoping I beat the odds and join them. The oldest one to die
in my family was 107. My Dad died at 90, but he smoked and his lungs went. My
mom is 92 and in wonderful shape. She is a breast cancer
survivor. We are strong and will continue to fight. This summer, we went up to
Canada to meet the angel that introduced me to A/P and I consider her my family
now and she, likewise. We e-mail almost everyday. She is out there working
hard and saving people from the ravages of these diseases. My family loves her
family and likewise. Now we try to do the same. You can too. Tell everyone
you meet about S/D, R/A and such. Get the books by Henry Scammell. They tell
the whole story. Let's get everybody talking about A/P. It works! Sorry for the
long post. I get carried away and am passionate about A/P! There really aren't
too many more options out there, are there? So, why bother with the symptoms.
Go after the disease and the symptoms will fall by the wayside. Best wishes to
all who read this, even you David. Love, The Rosner's happily married and still
in love after 31 years. P.S. My husband also has an autoimmune disorder and we
almost lost him in 1991 at the
age of 45 to two strokes, an amputation and other complications. He works too.
We DO know how to fight back. If you did the math, you all know that I am 10.5
yrs older. than he. Nothing is impossible. My Dad taught me that. Love to
all, Dolores
ktandtm <ktandtm@...
How did you know you had those lung problems?
Katie

Tom, I've not heard anybody talk about decreasing Enbrel so not sure what to
tell you. However, I am curious if you think weather plays a significant role
in your latest flare. I am having the worst flare of P I have ever had and it
came with the winter weather here in eastern Washington. Cheri
tr1rt <tr1rt@...
My derm wants me to start backing down on the Enbrel dosage to see if I can
handle that.
My question is- has this worked for anoyone out there on Enbrel? After the major
flare that
I went through that got me on the Enbrel I am a little concerned about backing
down the
dose and having another flare up. He (derm) says to give it a try and if it
doesn't work to
go back up... easy for him to say, he doesn't have put up with the pain and
swelling if he
is wrong!
Tom in Anchorage
btw did I mention that it was zero degrees in Ancorage today!! brrr

Methotrexate's Deadly Interactions
"With methotrexate, there's scarring of the liver that can take place. So the
guidelines that currently exist in this country are to actually have a liver
biopsy every few years when you are on methotrexate. Probably a bigger
problem, which isn't talked about as much is the effect it has on the bone
marrow. It
can literally wipe out your bone marrow. If you take it properly, it wouldn't
but the problem is certain things happen. I always will tell patients if you
are on methotrexate and you take any other medication or vitamin you have to
call me and ask my permission first. The problem is they never do. They'll tell
the physician they are on methotrexate and he'll give them an antibiotic. It
turns out that that combination can be deadly. In fact in every series of
patients treated with methotrexate there is a real death rate because of
instances
like that." --Dr. Mark Lebwohl

Bjorn,
I've been praying for your Mom all week. I was shocked and very sad
to hear what happened. I will keep you, your Mom and your family in
my prayers. Please keep the group posted.
Mary

Staying on Therapy: Matching Treatment to Expectations?
Many patients express dissatisfaction with their psoriasis treatment results
without realizing that they have stopped the therapy too soon. Younger
patients and patients with more severe disease are the most likely to
discontinue
treatment prematurely. Read more about staying on therapyâ¦
..............................................................................
............
Will My Insurance Cover Psoriasis Treatment?
Most psoriasis patients have insurance plans that cover treatments, including
biologics.
However, for other patients, understanding and managing the paperwork
necessary to ensure coverage from the insurance company can be time-consuming,
confusing, and frustrating. If you find yourself caught up in the hassles of
getting
insurance approval for your psoriasis treatment or are unsure what coverage
you have, there is help. Read more for some tips that may make your journey
easierâ¦
..............................................................................
............
Who Gets Psoriasis?
Psoriasis is a fairly common disease in many parts of the world. It affects
about 2 percent of the population in Europe and America, which translates into
around 14.5 million people in Europe and between 5 and 6 million people in the
U.S . Read moreâ¦
See how you can learn more and live better.
Visit www.PsoriasisSupport.com today!

Howdy, been a member of the group for about 2 months. This is my
first post. I was diagnoised with inflamatory arthritis 7 years ago
but was only diagnoised PA arthritis this year as I never had any
evidence of Psoriasis until this year. My psoriasis is only evident
because of my toenails and a small spot on my elbow. I guess thats
what took the Doc so long to figure out whats qoing on. Anyway I was
wondering if anyone knows what causes the severe fatigue that goes
along with PA. Also in the last couple month the arthritis has moved
into my neck and the middle of my back. I mentioned this to the Doc
the other day and he said usually the arthritis will settle in the
lower back rather than the middle back. Anyone else have this problem
or is it my imagination? I enjoy the site and all the good info it
provides. Eric

I know Chipping Norton!
We used to live at Norah Head, it's near Toukley.I was born and bred
there.
Leanne

In a message dated 10/26/2004 9:27:57 PM Central Daylight Time,
turrelle@... writes:
might have someone, in my OWN WORKPLACE
that also has PA!
Interesting - I have a neighbor that has both P and PA.
Tiffany

Delores, enjoyed your letter. It sounds like you have really done your
homework (with some help, of course) and I am glad to hear that you are
improving. I have only one other suggestion to make to you. I went heavily
into
meditating and yoga and breath. I also knew behavior modification from years
ago
as a counselor. When the heart racing begins, learn to control your
breathing. That is the key to bringing this racing to a stop and resuming
normalcy
again. When the racing begins (actually, I have not had this happen for a
long time now) envision in your mind a bell jar. Then envision yourself about
the size of an ant climbing s l o w l y up the bell jar keeping your
inhalation very slow to match the climb up the bell jar and then PAUSE with the
breath at the top, holding the breath a few seconds, and then SLOWLY climb
every
so slowly down the bell jar keeping the exhalation very slow to match the
climb down. If you do this a couple of times, you will find that with
controling that breath instead of sort of panicking, you can quickly return to
normal. I hope my description was clear enough.
Again, congratulations on your journey. Sandra

Hi, Serena!
Sally in North Little Rock here.
Sorry I don't get to my e-mail often, hence no reply to your 1st post.
Synovitis is inflammation of your synovial membrane, and obviously a pretty
serious connective tissue disease, or otherwise you wouldn't be on Plaquenil and
in so much pain before the Plaquenil! So glad to hear how much better you feel,
but its scary when you think these d--- diseases could still be destroying our
bodies!!
Instead of coming all the way down here, go to your family doc (vs your rheumy)
and ask about the AP. TAKE SOMETHING IN WRITING FROM ANOTHER DOC!! I'd
suggest Gabe Mirkin @www.drmirkin.com or the book "The New Arthritis Cure" by
Henry Scammell with Dr. Thomas Macpherson Brown.
GP's are used to doing a/biotic therapy. They do it for acne and other things.
Rheumy's tend to hate doing AP even though mino is now recognized as a DMARD and
many of us with RA have been Dx with Reiter's Syndrome, which means we got RA
DUE TO INFECTION!! Hence, doesn't AP (a/biotic protocol) make sense?!?
Ironically, I'm trying to get off the steroids and thinking of Plaquenil myself,
but still staying on the AP. All my docs have said to get off the steroids due
to side effects of diabetes, glaucoma, cataracts, slow wound healing and I have
horrific heartburn due to the combo of AP, Celebrex and steroids-d--- disease!!!
Plaquenil is in pill form, right? Strangely enough, I cannot find it listed in
my pill books and it is one of the most commonly prescribed meds for RA and
other autoimmune connective tissue diseases! I am naturally afraid of the
eyesight thing and knew a woman in the DC area who had been PAIN-FREE for 30 yrs
on Plaquenil but was going blind from it in her mid-50's-SCARY!! And she had
her eyes checked every 3 months. Literature says its reversible, but YIKES!!
LOVED hearing pain-free-HATE hearing blindness!! Some typically pompous rheumy
said "It's prob'ly not the blindness specific to Plqnl side effect, it's prob'y
macular degeneration!" What a pompous jerk-does he think nobody is as smart as
he is?! Puh-leeze!
Sorry for ranting Serena! Is Harrison in beautiful NW Ark?
I'm a St. Louis girl originally-Joined the military 31 yrs ago and have lived
all over the world. So glad I got to travel before I was crippled by this mess
as it is very difficult for me now....too painful.
Good luck, Serena!
Sally in Little Rock

Sue,
Thank you for your nice email. I know how you feel being in a body that
stops one from doing what they want and need to do. Please let me know when you
have your surgery. I will be sending up prayers for you. Blessings, Zoella

In a message dated 10/26/2004 10:26:49 PM Eastern Standard Time,
cookie6@... writes:
Thank you! I was actually thinking about water for Owen. The problem
is, because it's (the PA) is still going so aggressively, the last
time we saw his Rheumy (5 weeks ago) Owen's back was just a bit achy.
But in that time, he's lower back is killing him, plus he's got new
spots in his feet. Next Wednesday is his next appt.
Anyway, thans again
Leanne
Hey Leane...if you can get the rheumy to approve a certain amount of PT (so
you don't have trouble with your insurance), then the physical therapists can
react to what is bothering him at the time they see him without you having to
go back to the rheumy...when I first went to PT, the rheumy wrote a scrip
for PT for my back and my hands. The PTs then recommended the additional water
therapy, which the doctor approved.
Some other thoughts on PT...doctors usually don't mind prescribing it
because it is something you can do to manage your care yourself. Make sure you
tell the PTs that your goal is self management, that way, they will teach your
son how to do daily things to keep muscle strength, improve flexibility and
reduce pain.
I know we are all different and have different responses to this disease,
but I am convinced that 3 months of almost daily PT helped get my PA into
remission, and I rely much more on the exercises I learned in PT to control the
pain than I do on the meds. For example, if I wake up and my back hurts, I
immediately stretch and then try to get to the pool to do the exercises I
learned in PT. I really don't need the PT anymore because I kept a binder full
of
all of the exercises. It certainly doesn't replace medication, but I think
it really helps their impact. And I feel like there is a portion of this mess
that I can control!
Another reason why I have been very aggressive with exercise/PT, rest and
diet is my age...I was diagnosed at 32, and my rheumy was very concerned that
many drugs stop working after a time (so not good to run through all your
options too soon), and she wanted my body to help as much as possible rather
than
go straight to the most aggressive drugs. I am also not able to take the
new biologics due to MS/lupus risk, so my approach has been a little more
alternative.
Best of luck,
Rachel

---
Hi Donna,
I'm so sorry that the Remicade and the Enbrel aren't working. I just
started on the Enbrel (almost a month) and notice small changes :).
There are other drugs-I'm sure someone else will mention some others-
Arava, Humira. Are you taking MTX? Maybe you can talk to your Dr
(s).and get on something else. I will pray for you.
God Bless, Sue in Michigan.

http://www.medpagetoday.com/Cardiology/AcuteCoronarySyndrome/tb/4091
Denise
Pray the Rosary
www.Jmichaelstyle.com

Dear Karen, thank you for your kind words. I don't think I'm any braver
than the rest of the group and I'm sure I get just as frustrated and upset
as everyone. I do try to find the positive in things, but there are times
when I can't do it. My biggest problem has to do with patience with these
doctors and health care workers who don't care about your time. I get so
annoyed that once you get somewhere, they seem to think they own you and you
almost belong to them. You aren't supposed to have a independent thought
and are expected to just sit there like a sheep until they call your
name...lol. Can you tell I had a frustrating experience yesterday...lol???
Well I went for my 2nd MRI on my back and X-rays. This was supposed to be
the "newest and best" MRI in town. It was considered to be a partial open
since your feet stuck out and the top of your head if you were
lucky...doesn't seem partial to me...Anyway, they called the day before and
registered me on the phone and still asked me to get there 45 minutes ahead
of my appointment. Like a good little sheep, I did what they asked...lol.
When I got there they had me re-verify all the information I had just given
them, and then write it down again on another form. I thought that was
silly, but all places have their rules. So after waiting for an hour they
called me for the MRI. Now I have gained some weight from being on
prednisone for 3 years, but I tell you not many people could have fit into
this machine. They put me on the table and I basically couldn't stand it on
my shoulders of all places. (I'm not exactly built like a football player,
and I'm sure there is no way a football player would ever have made it into
that machine.) Anyway, they asked me if I could stand my arms being over my
head for 20 minutes, and I knew there was no way since my arms would be
smashed down over my head and it would kill me. So I just gave up. They
told me to have a seat and they would call me for the X-rays. After 30
minutes, I asked someone if they were ever going to call me for the X-rays.
They looked at me like "I didn't know that sheep could talk?" and said they
would ask someone. Finally I got through with the X-rays, and the
appointment that was only supposed to last 20 minutes for the MRI and 10 for
the X-rays took almost 3 hours. Talk about frustrating. They did talk me
into going to another MRI machine that they have one north of us, that fits
"almost everyone"..lol, but I'm not looking forward to it to say the least.
So by the time I got home I was exhausted, especially since I felt bad in
the first place.
All I know is if I ran a business the way they ran theirs, I would be out of
business in a few weeks. I guess they count on the fact you are sick, need
the procedures, are afraid to confront them, and don't want to upset your
doctor that the test wasn't finished. The funny thing is if you really
complain, they send a "good little sheep specialist" to talk to you to find
out what's wrong...They talk to you like you are 3 years old, in special
little quiet voice, and explain that these things take time...blah, blah,
blah...lol. I wasn't the one who got talked too though ok... I was better
behaved sheep than that this time.
So, I guess I'll attempt the one on Saturday. Since they said all MRI's are
built differently, and I've never had a problem before, hopefully this time
it will work. I can't wait to spend another "30 minutes" with these
people...lol. So I complain a lot too and get frustrated just like we all
do.
Thanks for letting me get that off my "exceptionally large" chest...lol.
Take care, Love, Fran

I would consider seeing another RD. Is the neuropathy do to a
mylating problem? I know that very rarely TNF drugs can cause MS type
symptoms that resolve if the drug is stopped. To my knowledge having a
problem with one TNF drug does not necessarily precluded the use of another.
I have to take klonopin when I am on a full regimen of Enbrel
because it is slightly stimulating for me. Like having to much coffee and
the tenseness causes some odd neurological quirks occasionally like muscle
twitches. I took the klonopin and road out the minor side effects in the
beginning. I haven't noticed any side effects in quite a while. I think
all of this may have been because I was so responsive to the drug. I was
within three months of losing the use of my hands and nothing was else was
working. Enbrel completely arrested the disease. I had relief from the
first injection. I was even in remission and stopped Enbrel completely for
a year and a half. Most of the time, like now, I only take one 25mg
injection every two weeks and I take the klonopin every other day. I would
consider asking an RD if you might trying a reduced dose of Enbrel at first.
Personally, I couldn't tolerate MTX but in most cases combining Enbrel with
MTX seems to be more effective with aggressive disease.
Everybody's immune system is different and sometimes it is a
question if finding what combination works. In my case I think a bad flue
virus drove my immune system into overdrive that expressed as PA and I have
had to knock it down with Enbrel until it normalizes over time hopefully.
Unfortunately I have some joint damage from before I went on Enbrel. I
fully believe that the joint damage could have been avoided if I would have
been given Enbrel first.

Harald,
I heard on the news that Target is also going to do that.
jan
"Harald Weiss, Technical Marketing Group" <hweiss@...
Dear Group,
The news item below appeared today, 9/21/06. No list yet of the 291
(out 1,800) generic drugs that will be available at Wall-Mart for as
low as $4 for one-month supply.
Sincerely, Harald
Generic drugs getting cheaper at Wal-Mart
No. 1 retailer launches program selling nearly 300 common medicines
for as low as $4.
By Parija B. Kavilanz, CNNMoney.com staff writer
September 21 2006: 2:22 PM EDT
NEW YORK (CNNMoney) -- Wal-Mart announced Thursday a pilot program in
Florida to sell about 300 generic prescription drugs for as low as $4
for a 30-day supply.
The program will be available to both insured and uninsured
consumers, and will cover 291 generic medicines for things like
allergies, high cholesterol, high blood pressure and diabetes.
Some antibiotics, antidepressants, antipsychotics and prescription
vitamins are also covered under the new plan, the world's largest
retailer said.
The company said it would soon run radio and newspapers ads listing
drugs included in the program.
The program, due to start Friday, will be available to customers and
employees at 65 Wal-Mart stores, Wal-Mart neighborhood market stores
and Sam's Club pharmacies in the Tampa Bay, Fla., area. The company
hopes to expand the program to its 3,900 pharmacies nationwide in January 2007.
In a conference call with reporters, Bill Simon, an executive vice
president in Wal-Mart's pharmacy business, estimated that saving to
customers would range from 16 to 67 percent.
For example, he said, buying a 30-day supply of the diabetes drug
Metformin for $4 is nearly 50 percent less than the cost of the brand
name version of the drug.
And a 30-day supply of a brand name blood-pressure drug that
typically costs $12 would save customers $96 a year if they buy the
generic, Lisinopril, for $4, he said. Once the 30 days are up, Simon
said customers can renew the plan for another 30 days for as long as
they need the prescription.
The $4 pricing will be available to all pharmacy customers with a
doctor's prescription that can be filled with a covered generic medicine.
For customers with a $10 prescription drug copay on their medical
coverage, Wal-Mart will only charge the $4, Simon said.
He declined to say if the program would help boost Wal-Mart's share
of the nation's highly competitive pharmacy business. The retailer
does not disclose those numbers.
But he did reveal that the company was in talks to partner with 30
generic drugmakers ahead of an expanded rollout. Simon said Wal-Mart
planned to keep prices for these products low by leveraging the
retailer's size. And it plans to boost pharmacy staffing as it rolls
out the program.
"This move is possibly the most forceful supply chain move by
Wal-Mart in years, since their final retail pricing for many generics
will beat the market prices at other pharmacy counters," Richard
Hastings, senior retail analyst with Bernard Sands, wrote in a note Thursday.
Hastings said that while big drugstore chains, Walgreen, CVS and Rite
Aid will probably respond to Wal-Mart's move, smaller prescription
drug buyers, like supermarket chains that offer pharmacy services,
could see profits from medicines come under pressure.
On Wall Street, investors were betting that Wal-Mart's new plan would
hurt other drugstore chains. Shares of Walgreen (down $3.48 to
$46.47), CVS and Rite Aid all tumbled following Wal-Mart's announcement.
Wal-Mart shares edged lower on the New York Stock Exchange.
"From an earnings perspective, this should be a neutral event for
Wal-Mart," Hastings said. "It could improve customer loyalty and
shopper traffic over the long term. The key for Wal-Mart is to get
customers in, and keep them shopping in other departments. We'll wait
and see if this works, but it will take up to two years to know if
this has helped."
Wal-Mart (Charts), which has been the target of critics who complain
that its health insurance is out of reach for many of its 1.3 million
U.S. employees, has in the past year introduced several programs to
improve its benefits for workers.
In April, the company extended insurance coverage to the children of
part-time workers and started a benefit plan with monthly premiums as
low as $11.
Wal-Mart said the program will help alleviate a major challenge for
seniors who have fallen into the "doughnut hole" coverage gap in
their Medicare Part D prescription drug plans and now find themselves
responsible for paying 100 percent of their prescription medicine costs.
At least one public interest group called Wal-Mart's drug pricing
initiative a "step in the right direction."
"These lower prices will give consumers a break from the outrageous
cost of healthcare in this country," said Emily Clayton, healthcare
advocate with the California Public Interest Research Group (CALPIRG).
"Obviously this plan is only part of the bigger healthcare problem.
In order to get the drugs at whatever the price, people first have to
go to the doctor to get the prescription. This is the biggest cost of
the system, especially for the uninsured," Clayton said.
To unsubscribe, email: rheumatic-unsubscribe@egroups.com

Hi folks, Happy Christmas to you all!! Can any one tell me whether it's
best to take the antibiotics on an empty stomach or with food, as I have had
conflicting advice on this??
Regards, Simon

Dear Sue, I certainly don't blame you for wanting a shot. Especially since
you have to have surgery in December. I would think if you can get a flu
show being on Enbrel, it wouldn't be a problem then if you are on Arava as
well. I'll ask my doctor just to be sure. I've just been lucky and never
needed one before, but like I said there is always a first time, and I've
probably jinxed myself by now. Take care and I hope you feel better soon.
Love, Fran

dear Julie
my arthritis started just like yours. I had extreme pain in some area of the
body that would last a few hours or days, and then move to another spot of the
body. I was told that this was a precursor to RA, and that I should have it
within the year, and that was the way it happened. My suggestion to you is to
immediately figure out what foods you are eating that may also be causing the
inflamation, that is the foods that you may be allergic to. I wish I had known
this at that time. I found out I am allergic to dairy and gluten mainly. I
suggest that you read the page on diets and follow it. If you want other
suggestions on this, I will be happy to help Lucy

Thanks to everyone for being so supportive during my
recent rants and questions. Yes, I'm having a big
flare in the joints and tendons, despite the 20 mg MTX
and previous signs of improvement. My description:
everything hurts except the tip of my nose.
The bad news: The doc breezed through the appt like he
was on speed-dial.
The good news: He prescribed a 5-day steriod pack and
continuation of the MTX, Folbee tablet, and Mobic. He
suggested Enbrel. I asked about Remicade. He's
submitting the paperwork for both for insurance review
to see which is covered and most cost effective.
More as it develops.
- Allison
=====

Is there a database where we can put information on ointments that
have worked/not worked. I (and my sister) have used a salve for the
last couple of years with very good results and we came upon it by
accident, actually the story is quite funny.... If there is a forum
for this type of information, I would like to share in hopes that it
may help someone else.
Thanks,
Sandy
[Editor's Note: Hi Sandy. Yes, there is a database. Go to

Hi Crystal,
Just as a matter of interest. Do you know if everyone who has P in your
workplace had it before they joined the company or after? You can probably guess
why I am asking.
Take care,
Martin

Please delete my name from the rheumatic groups. i'm getting tons of email i
don't want. and i can't anyway to remove my name!
thanks
susan
ninebunnyathome <Eightbunny@...

Greetings from the flatlands of Central NJ......Freehold to be
exact. I grew up in "the mountains of NJ".....Mendham. I miss
it..especially in the Fall/Winter. Thankfully my parents still live
there so I get to visit often.
I was diagnosed last year at 37, psoriasis since mid 20s, in
hindsight, I had minor arthritis symptoms for years....very
bad/crippling a year ago.
Take Care.
Mary

Hello and Merry Christmas.
Someone close to me is currently being tested for RA and Lupus
Erythamatosus. She has had joint pain for over six months now and was
tested last month. The results have not yet come in. When the tests do
come in, we want to get some second opinions. I don't particularly
trust her current doctor. Does anyone know of any particularly good
doctors or centers in the vicinity of Houston, Texas? We are just
getting started with all of this and don't know where to begin. Thanks
for any tips or pointers.
JPE

Dears
My wife is having MCTD since 5 years, now she is pregnant (5
months).She is 22 years old now.
Could you please describe me the risk factors of this disease during
pregnancy. I am totally worried.
Will it affect the fetus? Another thing I read some article saying
that "A medical crisis may occur for MCTD patients
after 20 years of treatment".
I am totally worried about my wife; I love her so much so I don't
want to let her die.
I am an Indian working in Saudi Arabia, now I send her to India for
delivery in order to avoid complications.
Please do reply
Thanks & regards
Siraj
+966 3 8588090 Ext-131

Susie:
I echo Karen's sentiments regarding your treatment by the young snip of a
doctor. There is such a thing called the Patient's Bill of Rights, and the
first one states "You must be treated with dignity and respect, free of any
verbal or physical abuse." Although, it doesn't state 'eye-rolling'
specifically, I see it as a passive-aggressive form of emotional abuse,
which hurts just the same. You, as a patient, also have the right file a
grievance. Every clinic has a Rights Specialist that can help you with it.
Last year, I was in the process of having to find a new physician because
the one I had been seeing for years decided to join the Foreign Physician's
Service and volunteered to go to Singapore. I have some complex problems as
the result of a pituitary tumor and am on a lot of medication. I see a lot
of different specialists, but needed a GP who could oversee and manage my
case. I decided to go to one my original GP had recommended. She was young
and fairly new. I thought great, I'd get someone who might be up on the
latest treatments, eager to take on a challenge, etc. During our initial
meeting, she got very argumentive and disagreed with certain medications my
other specialists had prescribed. One was medication prescribed by my
neurologist for fibromyalgia and another that I was given for the horrible
migraines I have. She even took exception to my taking a multi-vitamin,
saying if I ate a proper diet I wouldn't need any vitamins. I knew she
hadn't had a chance to go through my record nor had she talked to my other
doctors to understand why I was taking what I was. She wanted me to quit
cold turkey a couple of the meds, without tapering off. I knew from that
meeting she was not the type of doctor I was going to feel comfortable
with. I left and was going to chalk it up as just a bad experience.
However, I got a phone call from her a week later saying she had contacted
my pharmacy and they had told her that I had one of the medications she
wanted me to discontinue refilled. She started yelling at me saying, "I was
the one not open to trying some thing different and I was never going to
feel better if I didn't." That really pissed me off. So, I wrote a letter
to the Medical Director of the clinic. I received a nice reply back saying
he was going to look into the situation. And, he was really sorry for the
bad experience. I heard later from someone that I was not the only one who
complained about this doctor and she was on probation for what boiled down
to a 'poor' rapport with patients. We are not doing these doctors a good
service by not bringing their behavior to someone's attention. The longer
they get a way with it, the more it will become a bad habit. If your doctor
rolls her eyes at you, I am sure she is doing it to others. And, she needs
to be made aware that her behavior is not that of a proper doctor,
especially in a situation where the patient might see it. Sorry for writing
a novel. I just wanted to say, I feel you hurt. And, I would like to
encourage you to file a grievance.
Jo Ellen

Trying to file my finger nails today, and each of the affected fingers HURTS
LIKE HECK when I file it with an emery board....
Any suggestions? Is there some funky arthritis emery board that doesn't hurt
to file with?
Crystal

In a message dated 10/27/04 11:18:24 AM GMT Daylight Time, fam24@...
writes:
Editor's Note: OK, friends, we know that the US Presidential election is
less than a week away and some of us feel very strongly one way or the other.
I know I do. However, THIS is not the forum for expressing those views.
Politics and religion do, indeed, often cause explosive problems and this is
just not the right venue. So, please, no more expressions of support for
either candidate, OK? Just make sure you vote - this is too important a time
not
to. Kathy F.]
I was staying out of it anyway Kathy. lol
Take care,
Martin
[Editor's Note: Good going, Martin! In less than one week the nation will take
to the polls to cast their ballot for the next President of the United States.
In addition to the Presidential election, all U.S. House of Representatives and
one-third of the U.S. Senate seats are up for re-election this year, as well as
many state and local seats.
It has never been more important in the nations history to take part in the
democratic process and have our voices heard. By voting on November 2nd, we will
take part in choosing public leaders whose policy decisions will shape our
future, the future of health care in the US, and to a large degree, the future
of the world.
Just think what a difference we can make in our communities if all eligible
voters take part in the election.
Remember, your vote is your voice, so you needn't express it here! LOL. As for
me - I'm going to write in Martin for President! Kathy F.]

I once visited Rema Kittley in Lufton, Texas. She seemed knowledgeable and
definitely uses the AP .
Lea

Sounds good.

Hi Sandra, thanks for taking the time to reply. Meditation & tai chi were a big
part of my life and the breathing technique for hyperventilation is perfect for
the problem of hyperventilation which indeed does increase the heart rate. The
name for this is Atrial tachycardia and while annoying is not harmful and is
reversible. It happens when people breathe shallow and retain too much Co2
Crawling up the bell tower in that manner causes one to blow off the excess Co2.
till it is in a normal range and the heart then slows to a normal pace. I like
the way you illustrate that. However, my problem is that I have an electrical
conduction problem in the SA node from the right atria to the left atria. It is
an anomaly some people get. They grow a loop and both nodes fire at the same
time, making the heart muscle go into atrial fibrillation, which affects the
ventricles and causes them to misfire. My surgical heart ablation seemed to fix
the problem temporarily, but the heart
muscle now is becoming more sclerosed because my S/D in attacking my internal
organs and my atria is once more causing the problem of misfiring. I've been on
a holter monitor for the past 72 hrs and soon will know exactly where the
problem in the heart lies. There are probably some multifocal premature
misfirings as well. This is all very complicated. Last night, I went into a
heart rythm called bi jeminy. Which means that the ventricles are firing
prematurely causing a skipping of every other beat. I nearly went back to the
hospital. This may cause the ventricles to go into Ventricular Tachycardia
which, if not stopped with electric shock paddles, is fatal. With medication, I
got it to slow down to every 4th beat which is called quadri jeminy and not as
severe. I took a muscle relaxer ( The heart is a muscle.) Eventually my
heart rythm went back into a normal sinus rythm with the meds. My cardiologist
is not just a cardiologist, but an electrocardiologist and
works with the electrical conduction of the heart beat which when working
properly initiates all the other nodes to fire on time. My lungs are also
sclerosed and my lung capacity and pulmonary function tests are reversing itself
with the minocin. This is my 8th month on the drug. I am hoping the minocin
will do the same for the heart muscle before the damage gets too severe. Last
August my bladder which was also sclerosed began bleeding profusely and I had to
have a bladder operation to remove some of the damaged tissue. The internal
damage that S/D does is much more devastating and life threatening than the
external S/D which I also have. I am not concerned with the outside. My face
and hands have some changes and the skin color has a dark purplish hue. I also
have R/A. but concentrating right now on reversing the internal damage. I wish
it were as easy as breathing properly. That would be easier than having a 4th
heart operation or is it the 5th. I have lost
track. One thing the Minocin did was help my muscles not to ache as much. I
would say my muscle pain went from a high of 10 to maybe a 0-2 which is so
tolerable. I may have to have a pacemaker implanted to keep the heart beating
normally. I sure hope not. But maybe that will keep me alive until the
sclerotic tissue can be reversed. I believe in the power of prayer, so if you
know of a prayer list, please put my name on it. BTW, I am a nurse and worked
in Coronary Care Units since they began in the 1960's. But being a nurse and
being a patient are two different things. My brain has also been affected and
am forgetful about the timing of events and confuse my left side with my right.
I know what is going on, but can't seem to explain it too well. I was once
sharp as a tack, but am on so much medication for heart, diabetes, antibiotics,
esophageal motility, muscle relaxers, vasodilators and the occassional pain med
that my mind sometimes becomes foggy. However, I
do appreciate you opening your heart to me and giving me the information. I
hope others read this and maybe your suggestions may help them., too. Thanks
for your caring and kindness. Dolores
Sltfain@... wrote:
Delores, enjoyed your letter. It sounds like you have really done your
homework (with some help, of course) and I am glad to hear that you are
improving. I have only one other suggestion to make to you. I went heavily into
meditating and yoga and breath. I also knew behavior modification from years ago
as a counselor. When the heart racing begins, learn to control your
breathing. That is the key to bringing this racing to a stop and resuming
normalcy
again. When the racing begins (actually, I have not had this happen for a
long time now) envision in your mind a bell jar. Then envision yourself about
the size of an ant climbing s l o w l y up the bell jar keeping your
inhalation very slow to match the climb up the bell jar and then PAUSE with the
breath at the top, holding the breath a few seconds, and then SLOWLY climb every
so slowly down the bell jar keeping the exhalation very slow to match the
climb down. If you do this a couple of times, you will find that with
controling that breath instead of sort of panicking, you can quickly return to
normal. I hope my description was clear enough.
Again, congratulations on your journey. Sandra

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My experience has been the opposite. I've had very mild psoriasis
for 15 years.....not a big deal...just a nuisance. I'd never had
arthritis until last year when one of my oldest, closest friends
committed suicide. I had never been so stressed, depressed and
shocked (he and 3 of his brothers had been molested by our family
priest....but that's another story) I was crying all day for weeks
on end. Within 2 months I could barely walk and the psoriasis was
becoming a big problem. It came on fast and furious. At this
point, the Enbrel is doing wonders. However b/c my reaction to the
Enbrel was so fast and complete, I wonder if my emotional healing is
helping my physical symptoms too.
My guess is that, with everything else, stress effects everyone
differently.
Take Care,
Mary

Fran...so sorry you have had to go through all
that trouble with the MRI. When you do try it
again: I have found that getting them to put a
pillow under my feet/knees takes some of the
stress off my back and makes it more bearable
Karen (Oklahoma)
=====
Shalom

Right Fran!
Now I know its you. My computer just shut down when I was in the middle of
reading your mail. It did the same thing the other day when I was sending you a
mail. Stop it! If you don't, so help me I will come over there! I mean if
you don't like me just say so! lol.
Right now that I've got that of my chest. Oooops sorry.
No, I just wanted to say that you have an uncanny knack of making us laugh
even when you are describing how bad a day you had. Brilliant!
Hope you don't have such a baaaaaaaaaaaaaaad day on Saturday. Get it?
baaaaaaaaaad?
Sheep?..............Sorry..............I'll get my coat.
Good luck,
Martin

Hey Martin :)
All of them had it prior to working there. :) Yes, it can definately be a
high stress job (courier company office) but I don't think it causes P heh
heh
But it is nice to have some other people to talk to about it, and compare
what's worked and what hasn't. And it's REALLY nice to have somewhere that
understand all the flaking all the time LOL
Crystal

Hi Kelly, Your story is all of our stories. We also share your frustration.
You must find a doc who takes you seriously. In today's post, someone put in
something wonderful and powerful. I wish to thank that person. I not only put
it in my favorites, but I printed it and will make a copy to give to everyone of
my doctors. I have a team of Doctors working together for me. When I walk into
a doctors office, I introduce myself and tell them how I feel symptom wise and
that I have chosen to go on antibiotic therapy. If they are receptive, even
curious, and open. I hand them copies of the information I have gathered. If
they are unresponsive, arrogant or rude, I do not waste any more of my time or
theirs. It took me a year to amass a group to take care of me, but I call the
shots. Remember, the doc works for you, not the other way around. I have fired
quite a few. Why should I pay someone who insults me and does not acknowledge
my intelligence. Yes, I too can be
arrogant. It is my body I am protecting and the future of my family is in my
hands. I will fight till my last breath. Start researching. There is no room
for pity here. It's hard work and it makes us tough. The world can be
cruel,.but we can only change ourselves and not the other's. There is plenty of
info out there. Don't depend on one doc. Find the doc you need. I am a nurse.
Do not lump the bad ones & good ones together. And why should they care? They
don't owe you anything! Don't you know that America uses a "cover your ass
medical approach" There's no room for caring here. There are many good
responsible doctors out there and you are your own nurse. Go find one in your
area and good luck.~~~~~Dolores
Kelly <dadskel@...
What is wrong with people? Docs,nurses,etc... They seem to not care
about the horrible symptoms and mental issues that go along with these
diseases. I just do not understand, It is very odd and concerning to
me. I am running fevers 24/7,Have severe joint pain,fatigue,muscle
spasms,muscle cramps,migraines,depression on and on and on,I am
certain that I am not the only one with these complaints, I am at my
wits end. I cannot seem to get through to the docs or anyone for that
matter. So if there is anyone out there with ANY advice PLEASE let me
know! Thank You so much,Kelly
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Hello Crendy12,
We have these doctors listed in Maryland. If you need doctors in WV or
PA let me know.
Chris.
Paul V. Beals, M.D. FP 1969 - excellent
9101 Cherry Lane Park #205
Laurel MD 20708.
P: 202-332-0370
F: 202-986-3255
Molly B. Burgoyne, M.D. (local patients only)
Delmarva Orthopaedic Clinic
510 Idlewild Ave.
Easton, MD
P: 410-820-8226 or 410-822-8270
Allan C. Gelber, M.D. RHU 1989
1830 E. Monument St. Ste 7500
Baltimore, MD 21287
Assistant Professor of Medicine,
Division of Rheumatology,
Good Samaritan Hospital,
5601 Loch Raven Blvd, Suite 508,
Morgan Building,
Baltimore, MD 21239.
P: 410-532-4005
Gabe Mirkin, M.D. promotes AP (son is a foot doctor in same
bldg.)
Mirkin Medical Consultants
10901 Connecticut Ave,
Kensington, MD 20895-1645
P: 301-942-7900
F: 301-942-9837
Richard M. Siegel, M.D. Ph.D.,
Fellow ARB NIAMS,
NIH Building 10 Rm 11N311,
Bethesda, MD 20892.
P: 301-496-6753
F: 301-480-7352

I finally decided to drive the distance in order to see Dr. S. I was
impressed with my first and only visit, however, I am increasingly
agitated with the fact that neither of his 2 nurses (I don't even try
for the Dr.) will return my calls. In fact, in my initial visit the doc
himself advised me to email him if I had any questions; I did and he
never responded. This is not a once or twice occurrence, it happens
every time I call.
I am well aware of the term "busy" so please spare me of this notion.
We're all very busy, especially those of us who are sick and are still
having to work. Besides, everyone's time is as valuable as the next
guy's, be he a professional, or a patient.
Does anyone have a suggestion? All suggestions are welcome.
Mad as heck,
Roneice
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in error, please notify the sender immediately by e-mail and delete all copies
of the message.

Fran,
This wasn't from Martin, I had added a note to him wishing him good luck at the
end of
my post! I guess somehow only half of it was sent! Sorry

Hi Everyone,
Sorry I haven't wrote for about a week; I've been very sick with a
cold, eye problems, spine problems. First I wanted to say:
I'm 43 years old, I have had P since I was about 12 and wasn't
diagnosed with PA until a year ago after I had broke my right hip my
index (right)finger went stiff and now I can no longer bend.
I can no longer see very well out of my left eye-it is like looking
through a halo. I haven't been to my Rheumy-I have an appt. next
week, but my Dermy that put me on Enbrel gave me this ointment to put
on my eye lid even though "it" is in my eye that is bothering me not
outside!! My Dermy put me on "Protopic" and it burns and makes my
eye water awful-it is greasy and gets all over my glasses and that
makes me really not being able to see!! I'm going to make me a appt.
to see a eye Dr. as soon as I get to feeling better and can get out.
My spine area hurts so bad I can sit up much and can't bend over.
I've been using a wheelchair instead of my walker.
Good Luck Michelle with your knee replacement-I will be thinking of
you and praying for you. I have my hip replacement Dec. 6th, which
I'm not looking forward to, but I want it over so bad!!
Welcome all the new people-this is a great group and I have learned
so much about this disease after I joined!!
God Bless, Sue in Michigan.

JANIE... Sounds like you are doing pretty good. If in a few months your
knees do not seem to be getting better you may have to try a short course of
anti-inflammatorily med. The last time I had a problem I took four or five
days of low dose prednisone and it got my knees back in shape. Now we all know
prednisone is bad.....but sometimes it gets the inflammation down to where
the minocin can better reach its target. Since I had not had any prednisone
in over four years I figured four days of 5 mg prednisone was not going to
kill me. My doc has always felt that a small dose given over just a few days
sometimes helps. It worked and the last two years I rarely get even a twinge
in my knees.
Although most of us on this board try to get by with the least meds
possible, sometimes a small bit of help can get us over the edge and on our way
to recovery. Never feel bad if you need to use these meds to keep yourself
up and running. Just a possibility. Martha

Debbie,
From what I have gathered in my research online, it's ok to place them in the
center of the foot (arch). It is encoured to try different areas for best
results. I even saw pictures where they were placed on other parts of the body
as well. I think if you feel they worked wonders then you must of placed them
properly for your needs.
Maggy (still waiting for mine)

hi all,I have started a blog http://outofstress.blogspot.com which
explains about stress relief , weightloss,obesity
,constipation,cancer prevention etc...In this blog i suggested some
yoga to reduce
weight(obesity).Read this article and give Your suggestion
http://outofstress.blogspot.com

Ros,
Good suggestion. It is important to leave a key sentence or two of
the email that your are responding to, so that your response make
sense in context of the previous email. Indicate deletions with
... There is no normally no need to leave the entire incoming email,
unless that email is short or you think that the entire group should
see the entire incoming email again.
It is also important to keep emails to a few sentences if possible.
Few people will read material longer than a page. There are
exceptions, such as emails which are meant to be tutorials or are
entire newspaper articles.
Massive text is hard to read, so break up long paragraphs into short ones.
I like including to include web links, so that people who want to dig
deeper into a topic can do so if they wish.
Sincerely, Harald

Hi all:
I have had the same problem. I have a shit load of endocrine problems (had
my pituitary gland removed several years ago) in addition to now P & PA. My
endocrinologist wrote me a prescription for the flu shot. I have went in
twice to get it and have been told by the nurse in charge of giving the
shots that everyone one thinks their condition is critical. Called my GP
and she politely told me that she only had 16 shots to give to her 600+
patients and she had to decide to give it those who could bearly crawl into
the clinic to get it. Unfortunately, I wasn't one of them. I am beginning
to think that it is all a scam. For years, we (the sheep) have been
barraged by the media that this was going to be the worst flu season yet.
They have us convinced that we have to have that flu shot. We are certainly
lining someone's pockets and I am getting tired of it. Since I developed P
& PA, I have discovered that it is just another expensive chronic condition
where the price of the medication is highly inflated and they have us
(sheep) by the balls. Jo Ellen

Dear Karen, thanks for the suggestion and I actually did have a pillow
under my knees. It helped the 2nd time, but not the first time. That might
have been due to the fact I never actually had the MRI the 2nd time..lol.
I appreciate the thought though. Thanks again, Fran

Hi all. I have been watching the posts and thought I'd put in my 2 cents worth.
As far as the age question goes, I am 37 now and was diagnosed at age 30. I
live in Montana now but was diagnosed when I lived in Missouri. I have been on
Enbrel now for 5 weeks. Nothing yet. The injectable MTX worked wonders but the
constant nausea was more than I could take. I would even look at the syringe
and start heaving. It was miserable. As for the shoes, I wear Birkenstocks on
bad days and Borns on good days. I also find that being over-tired makes things
worse. I am a Nurse Midwife and deliver babies. Last week I was up all night 2
nights in a row and I can't seem to shake the fatigue. Now my partner is
leaving for 5 days with several ladies out there due and I'm already so tired I
could cry. (Sorry I try not to complain...for me it just makes it worse.)
Have a good weekend all.
Rae

Dear Martin, I think one has to learn to laugh at one self or life just
gets way too serious. Besides you either laugh or cry and most of the time
I would much rather laugh, though I do get frustrated with the medical
field. I don't think that they are as a group incompetent, but since I have
seen so many and all different types, I'm bound to run across a few losers.
Now as for me breaking your computer...lol. I never said I broke the MRI!!!
Just couldn't get in the darn thing...lol. Of course being a runner you are
probably really thin. I used to date a runner in high school and always
felt like spaghetti and meatballs when we went out together...lol. He was
much taller than me, but if he turned sideways he would tend to
disappear...lol. I've often wondered over the years how he has turned
out...I mean you can't keep running forever can you?
Take care and I'm not even sure I'm going on Saturday. I just don't know if
I can handle the sheep role again...lol. Love, Fran

Hi Ester;
I have a friend near Orlando who is very sick with SD.Do you know of
anyone there that accepts patients that have very limited finances.I
know she is on government assistance.If you have someone could you let
her know at cati777@...
Thanks a million Lynne

I took this medicine for a while and it really got me through a bad time with my
GI tract. I had delayed gastric emptying as well as GERD and constipation.
Motilium was a miracle drug for me! I had to get it from Canada since it is not
approved in the US--at least it wasn't when i took it--don't know about now.
Once I was doing better I was able to stop it but I have considered going back
on it as my problems are acting up again. It's been awhile--probably three
years since I took it. The only reason I hesitate taking it is that I think it
made my breasts get very big (it is used to produce milk for woman who have just
given birth but can't breast-feed due to lack of milk). I didn't start
lactating but my breasts got very big; however, prednisone definitely put weight
on me so who knows how much was from what drug.
I hope my answer helped!
Carol E from NY

Hi Jen,
These are the doctors we have listed in Georgia. I don't know if any of
these doctors have treated dermatomyositis specifically but the
treatment is the same as for rheumatoid arthritis. Dr. Sentef is very
experienced.
Chris.
Joseph Sentef, M.D. (oral and IV)
Sentef Medical Center PLLC
513 Benjamin Way Suite 200
Dalton, GA 30721
P: 706-217-1795
F: 706-217-1814
sentefjoemd@...
Marcia V. Byrd, M.D. FP ACAM Sept. 2002
11050 Crabapple Rd.
Suite 105-B
Roswell, GA 30075
P: 770-587-1711
Michael Milton, M.D. FP Sept. 2002-09-05
Advanced Medicine & Longevity Center
6030 Bethelview Rd. Suite 403 (Uses Arthritis Research Center for
testing)
Cumming, GA 30040
P: 770-205-6068
M-TH 9-12 & 2-5
Fr 9-2
Stephen B. Edelson, M.D. FP - 1967
Environmental and Preventive Health Center of Atlanta,
3833 Roswell Rd., room 110
Atlanta, GA 30342.
P: 404-841-0088.
Oliver L. Gunter, M.D.,P.C. (GP - 1970)
24 N. Ellis St.
P. O. Box 347
Camilla, GA 31730
P: 912-336-7343
Charles C. Adams, M.D.
100 Thomas Road
Fort Oglethorpe, GA 30742
P : 706-861-7377
P : 888-291-4955
F : 706-861-7922
Father was an MD died of SSc
Gwinnett Arthritis Center Dr. Elliott
600 Professional Dr. NW
Lawrenceville, GA 30045
P : 770-822-1090

I have a mild form of PA. Right now I have it in my hands mostly,
though it does effect other parts of my body, including my feet and
neck. Lately, when I'm flaring up, I can feel my knuckles of my
hands swelling as they get more and more red. Sometimes I'll feel a
lot of pressure around my knuckles and one of my fingers has even
twitched uncontrollably. Sometimes it's hard to straighten my right
hand especially and it starts curling up like into a claw. Does any
of this happen to any of you? Is it a sign that the disease is
progressing and possibly crippling my hands? What do you do to
prevent it from getting worse? I just started taking a new
medication - the one that starts with sulfa- so it hasn't really
started working yet. Is this a good medication for PA? What are the
side effects? Thanks for any comments or advice. Amy

I did not see the original message about incontinance so don't know if my 2
cents worth is on the subject but I too have battled mild incontinance. Mine is
caused by high acid foods. I read somewhere that high acid foods irritate the
bladder lining. If your problem is not terribly serious it might be worth it to
try to eliminate high acid foods, ie., orange juice, lemonade, coffee, tomatoes,
etc.
I hope you find an answer soon. Cheri

Hi Micky,
Good to hear from you again. Sounds like you had a good holiday. Just what
you would have needed to recharge the batteries eh?
You reminded me of the first time my wife and I went to Mallorca. Every
single day for two weeks our dessert consisted of about six hard plums in a
bowl.
I don't think I have eaten another plum since! Lol
Cheers,
Martin

I guess from my posts about NYC you all must know I live in the metro area.
Actually I live
in Connecticut, in a wonderful old house I used to take care of myself. Right
now I have
been on enbrel for two weeks, mtx injections for about a year, bextra for about
a year,
singular for allergies, effexor for depression and pain, folic acid, and any
other vitamin
that purports to have anti-inflammatory effects (GLA, DHA, EPA, carnosine) and I
found a
B12 tablet that tastes good and melts under your tongue for the fatigue. My
husband used
to laugh but over the years has noticed that since I became a self professed
vitamin nut, I
get sick much less often.
We own a home in Sun Valley, Idaho, and are putting an addtion on our house in
CT. Since
my husband's best friend got Lou Gerhigs and I was diagnosed he has become more
focused on the here and now, rather than on 20 years from now. Something to be
thankful
for. I do have a glass of red wine on weekends and hope to cut out the MTX so I
can do it
more often!:)
jerre

In previous posts, I mentioned that I have no pituitary gland and all the
awful stuff that entails. Frequent MRI's, ungodly amount of lab work, the
expense of having to see several specialist. I have also been dx w/
fibromyalgia and depression. Now I have been dx's with pustular psoriasis
on my hands and feet and PA in my knees, elbows and hips. The first thing
my dermatologist asked was what kind of stress I was under when I
questioned what caused this latest betrayal of my body. Pre-tumor days, I
was passed from doctor to doctor trying to figure out what was wrong with
me. The usual response was either 'stress' or 'age-related', and then
patted on the head and prescribed anti-depressants. I have tried
biofeedback, yoga, exercising to help elevate my stress, but my body had
decided it was not going to let me off that easy. I can totally understand
everyone's frustration. Jo Ellen

In a message dated 11/17/04 8:16:18 PM Central Standard Time,
skruff@... writes:
~~~I am angry with the world. I am grieving for the loss of my career, my
wife, my life. ~~~
~~~I am not considering suicide - just wishing for a better world.
Greg.
I've walked the path you are now on. Maybe if you look close enough you can
see my shoe prints. I was flat busted, no job, savings depleted, hurting so
much that even getting from the armchair to the bathroom was a battle, no
insurance, no healthcare, and being completely dismissed by everyone I sought to
gain some type of public assistance from cause I was relatively young and
undiagnosed. I had waited until it was too late. I had to prove I could take it,
typical, "stop whining and deal with it", male ego. My dad saved US 50 states
quarters and I stole at least $300 dollars worth of them to put gasoline in my
vehicle which I was close to selling. For the first time since I was 8 years
old I didnt even have 1 dollar and was unable to earn a buck. There were many
times when I seriously considered ending it all and to be totally honest I
still have those thoughts from time to time. I wish that I could with full
confidence say that some of the dietary changes I adopted made the difference or
perhaps the psychosomatics of psoriasis are more than I give them credit for and
the changes in my attitude made the difference but long story short, I
survived the storm. Pain and rejection led to depression, which led to despair
and
destructive ideation and eventually anger. I got so enraged at psoriasis I
vowed that I would find a way to fix this and nothing else mattered. I spent
probably 18 hours a day for about 9 months online and later in University
medical libraries researching everything I could find about psoriasis and how
the
human body works. Even though I never did identify a magic bullet I think all
the little things combined is what turned the tide. Go ahead and get mad and
use that anger as motivation to understand your enemy. Focus your attention
and use whatever resources you have to find what will work for you. There is a
better world just waiting for you to discover, utilize and promote it. Orin

I realise that certain or most blood levels will have different measurements
in the US to the UK. I am in the UK. Does anyone know what a 'normal ESR
level would be in a person with no joint problems? At their highest in