Rheumatic

Check out this web site:
http://www.worldpsoriasisday.com/global/index.html
World Psoriasis Day - October 29.

susan in ohio
40 and sick for 9 years

Sue from Sale in Victoria Australia - age 50-
Diagnosed with PA 18 months ago but have had psoriasis since 12 or 13.
Hi Greg,
nice to speak with another Aussie.
I'm currently taking mtx 25 mg and folic acid but it is, at best just
keeping things at bay. My rheumatologist has indicated that I may be
able to go onto Embrel next year if it goes on to our pharmaceutical
benefits scheme.
Reading through the recent postings about the difficulty even getting
the flu injection in America, you can't help thinking how lucky we
are here - with all its shortcomings our health system appears to be
a lot better than our poor friends in the U.S.A.
Bye for now
Sue from Sale

Thank you for your reply, I too see Dr. T in Boston and a new reumy in NY for
the same reasons you want a second doctor nearby. My docs are willing to work
with each other and share their information. All my other docs are in NY and 3
are in the same building. The 4th & 5th are nearby and all have access thru
computer to all my results, tests, labs and procedures. It took me a year to
amass these particular docs. They are delighted with my progress. I also have
a clinic around the corner from me with a PCP for walk in problems and she
practises a mix of holistic and regular medicine. I can get referrals from her
for certain Physical Therapy's such as aqua therapy and massage. I think after
such a long time, I have found the right combo. Good luck with your search and
remember not to give up your rights to another person even if he is a doctor.
They are not God and contrary to general belief, they do make mistakes.
Research, research, research. Not an appointment
goes by that I don't bring them some new literature. P.S. I am an almost
retired nurse. Working 40 yrs. in the business. I still work part-time at a
clinic for the disabled. I am 70 yrs. old. and have much life left to live.
Stay busy and don't let this disease take away your quality of life. Do what
you love, whenever you can, and when you can't, take a nap. You'll feel better.
Good luck Dolores
"Cheryl, Gordon, Jessica & Claire" <cgjcferguson@...
Thank you for that post to Kelly. While we already have our daughter
Jessica on AP for her Scleroderma, and she is pretty much fully
recovered, she saw Dr. T in Boston. Now our cooperative local GP is
insisting that we see a local non-AP Rheumy. This is not to change the
treatment plan in anyway, it is just that the GP feels uncomfortable
without having anyone here locally (northern California) and thought
that if Jess were to need any kind of urgent care that the regular
doctors wouldn't touch her without the supervision of a Rheumy once
they found out about the SD Diagnosis. So we will go, but I have been
preparing for this appointment and what I will do if he tells me that I
am crazy for having her on AP or even that maybe she never really had
SD or that it was a spontaneous remission. Your comments to Kelly are
really helpful. I printed them and will do just as you suggest.
Thank you,
Cheryl Ferguson
To unsubscribe, email: rheumatic-unsubscribe@egroups.com

O.K. - now I also tend to be a bit of a lurker but I can contain
myself no longer.
At the risk of making a complete fool of myself I have a question to
ask about an abbreviation which ocurrs in many of your emails.
It seems that when someone says something funny or maybe a
bit "tongue in cheek" they then say "lol!!!!!"
Now I'm a simple Aussie gal and I have never come across this
expression. Could one of you lovely people tell me what this means
and am I write in thinking it just means that whatever has just been
said is a joke????
Isn't language a hoot - I'd hate to tell you some of our Aussie slang.
[Editor's Note: Glad you asked! LOL is computer speak for Laughing Out Loud.
ROFL = Rolling on the floor laughing. TTYL = Talk to you later. Oh, I could go
on, LOL. I have a cousin who visited us in the US from New Zealand this summer.
He had some rich slang, too. It must come from hanging on to the world upside
down, I suspect. ;) (Smile and a wink). Kathy F.]

Hi "hollar9"
Check out <http://www.rheumatic.org
you will find helpful answers at "frequently asked questions"
It is not uncommon for the pain level to increase after starting AP due to
the Jaresh Herxheimer reaction. It actually means the AP is working, though
not hurting more does not necessarily mean the AP does not work. You can
read about it also on that web page and there are also some suggestions on
how to deal with it. Also read people's stories of how they were dealing
with rheumatic diseases.
This AP therapy is a long term treatment. When we are in pain we rather
would have a quick fix, but unfortunately, for our diseases there are no
quick fixes, and some seemingly quick fixes come with a high price (not
just in money). Some people start getting better right away, after starting
AP. Many get worse for a while and then slowly, but steadily start
improving. They still can experience periodic flare-up of disease activity,
but the symptoms will become less severe and the time spans between flares
will increase. We call this "Two steps forward -one step back".
I hate to tell you, diet does matter. When you eat junk food you are
working against yourself. You need all the healing power you can muster to
deal with your illness, not waste it on countering the burden a poor diet
creates for your body . Fish is a good choice :-), especially if it is wild
salmon.
Take care,
Ute

Dear Carla, Just to let you know, I'm starting on a high dose of
Glusosamine Chondroitrin. When I was at Shand's Hospital in Gainesville
Florida for facial pain, the doctors there all agreed it would help with the
TMJ and the bone loss in my jaw joint. I used to take it and thought it did
help some, and just got out of the habit. The type I buy also has MSN in it
which is supposed to help with pain also, but I have no idea if that really
would help you. I'll let you know if helps me and if you try it, let us
know if you notice any relief. It sounds like though you and your boyfriend
both need some pain medication to get you through the rough spots right now.
Can you call your doctor and ask for a small amount until your next
appointment? I know they don't like to prescribe pain medication, but when
they know it's a small amount and you are coming to see them soon, sometimes
they don't have a problem with it. It's worth a phone call.
I can sure understand the hip and knee pain. Right now my left hip is
killing me and my thigh is swollen, and my right knee hurts almost all the
time. So when it comes to steps now "I don't have a good leg to stand
on"...lol...(I wonder if that's where that saying came from...) Seriously,
though it's not much fun and hurts like crazy. Mine seems to bother me the
most at night. I swear everything seems to hurt more once the sun goes
down. I guess it's because I"m finally alone with my thoughts (unless you
count my two little dogs and my husband)...but I sure hate to wake them up
to tell them I'm in pain. I really agree that Vioxx worked the best. Of
course, I have a minor heart problem now, that might be from Vioxx, but who
knows? It could be from all the other drugs I take just as well. I've
never had a heart attack and to me that's the good news. I hope they find
something that works as well as Vioxx and soon.
Good luck Carla. I hope things improve for you soon and we get some much
needed answers. Take care, Fran

Hi Lori,
Well, if you are looking for wackos you have come to the right place. Eh
ummm.........what I meant to say was if you are looking for fellow PA sufferers
you have come to the right place. lol
Seriously though, welcome to the group. Hopefully you will get all your
questions answered. The universal agreement in the group is that in most cases
our knowledge on the disease increases greatly due to the knowledge of the
members here, whether it be from experience of having PA over several years or
that and a medical background too as some folk have.
Unfortunately I don't yet have any Scientific awards. I think it is
something to do with the fact that I was a maintenance technician and not a
scientist. lol
I am currently on MTX among other things. It seems that the doctors would be
happier if we did not drink alcohol at all while on it but some of them
(including mine) will say that it is ok to take the occasional drink. I think
that it is a case of them worrying that if they gave an inch, some people will
take a mile. So some of us do and some don't. (Take the odd drink I mean, not
take a mile. lol) Talk to your own guy and see what he has to say about it.
I do take the odd glass of wine or beer but I don't go mad.
Hope you get what you are looking for from the group.
Martin

Dear Group,
It is with much sadness that I write to tell you that Chris Adlard's daughter,
Janene, lost her battle with scleroderma. She fought long and courageously.
Janene was the sister of Stephen White, owner of this mailing list and financial
backer of the website. Janene also leaves a husband - Darren, and a stepfather
-Charles.
Janene's passing is a great loss to this very closely knit family. It was an
inspiration for me to "watch" from afar the depth of loving support and care
they gave Janene over the years.
For some of you who may not know, it was Chris Adlard who designed the website
back in 1996 that first brought free information on the antibiotic protocol to
the world. She has worked tirelessly all these years not only in maintaining
the site but in answering the unending email and phone inquiries generated by
that site, all while holding a full time job and being there for Janene. She
has consistently made herself available - offering information, support and
encouragement to people world-wide both on and off this list. Just recently, I
had an email from someone in Australia telling me how much help and
encouragement Chris has been to her over the years in her battle with this same
disease.
If you would like to offer your condolences, the email addresses are
Chris - cadlard@...
Steve - spwhite@...
May God bring them comfort and peace in this their time of sorrow.
Ethel

Thank you Kathy F!- tell me, does anyone out there have access to
actual Methotrexate statistics (ie. # per thousand who experience
severe side effects?) Would love to have that info...
I have the flu today - takes my mind off the PA though, so I guess
that's a good thing. IAW

Welcome Annette --
Figuring out PA and P is a lot like herding cats, it takes a lot of time and
energy to achieve very little results. I had mononucleosis about 12 years ago
which seemed to trigger severe allergies which grew into PA......all autoimmune
diseases. I didn't realize that the "dandruff" I have had since I was a child
is actually P and some of the joint flares I have experienced were probably
forms of PA. I hope you find the best combination of meds to prevent joint
damage and feel as well as possible.
Also, I hope you keep us posted on your progress. Cheri
Annette Mary Small <annette.mary.small@...
I haven't wriiten before but have found all the messages very interesting. I am
46 and have had psoriasis since I was 13 but have been diagnosed with PA for 2
years. My rheumatiod factor has consitently been high though (just under 100) so
the Rhuematogist is keeping an eye on that although she thinks I still have PA.
I haven't had any swelling. The joint pain is not as severe as many of you but
it is in most of my joints and I find it discouraging to be in pain most of the
time. My neck is the worst but I have found a magnetic necklace has helped.
I don't take asnti-inflammorites all the time as they don't agree with my
stomach. I had a day in hospital as a result of Celebrex, just 5 days after
first being put on it. My rheumatoligist and I don't think she's much different
to others here in Canberra is very wary to put you on much medication unless
you have swelling and definite bone erosion as shown on X rays.
I may write more often if this goes through, I wasn't exactly sure if this was
the correct way to send a message.
I was very unwell a few years ago with Chronic Fatigue Syndrome and I often
don't know whether the fatigue is because of that or from the PA.
Do any of you with PA have the high Rh factor?
Bye for now
Annette

Mine was teling me to take 20mg twice per day as well. But RA and PA have
different reasons that the joints inflame, too. One has to do with a lack of
lubricant or something, and the other is an inflammation of the lining
between the joints. Maybe that has something to do with the different
dosages?
Crystal

In a message dated 11/1/2004 6:05:17 AM Eastern Standard Time,
orinok@... writes:
Thanks I will appreciate any info you can share on the topic. I will say if
it is done at all in Germany that is more than in the USA. Not performed at
all for that purpose here due to risk of serious complications, just noted
as
having eliminated psoriasis in a few patients by a nephrologist who treated
many
diabetic patients requireing dialysis. Orin
Orin, just saw something in this month's issue of Arthritis Today...it was
recommended for someone whose RA hasn't responded to any other treatment...
Rachel

I am 58; diagnosed with PA 2 years ago exactly. Probably have had it for 15 or
more years but did not have the P. Currently on metho (20 mg wk) and Enbrel (50
mg wk) and so far-so good :-)
Adriane van Gils
Massachusetts

My wife sent me this tidbit from, of all things, a financial newsletter she
receives. I had to be picked up off the floor after reading it, so exhausted
was I. :-)
Clowns & Harlots: Trained Professionals
By Christopher Corbett
The first technician unable to install cable TV service at my house thought it
odd that I would wonder why he did not bring a ladder with him.
The house is three stories tall, as are nearly all of the other old houses in
my Victorian neighborhood. But he didn't have a ladder. "Watch TV downstairs,"
he advised.
The second technician, sent by the supervisor of the first technician, also
was unable to install cable TV service to my satisfaction. He didn't have a
ladder, either. We walked around the house a couple of times and surveyed its
height. "I'm not going up there," he advised. "No way."
I'd already guessed that. "You got service on the first and second level," he
scolded. He radioed back to HQ. "We have service," he said, in the same tone he
might have used for, "The Eagle has landed." He acted offended when I asked to
speak to his supervisor. "I'm a trained professional," he said.
The third technician (also unable, etc.) was a big concept man, a trained
professional who understood, or so he told me, the parameters of the task at
hand. I like a man who uses the word "parameters." I'd have liked this one even
better if he'd had a ladder. But alas, there was a shortage of ladders, and I
imagine a lot of folks are watching TV downstairs because of that.
Life is a minefield full of trained professionals. You can hardly find a knife
sharpener these days, a tinker, a tailor, a cobbler. The ancient trades that
should sustain society have near-vanished and in their place. trained
professionals.
Just the other day a gentleman arrived at the manse to clean some rugs. Quite
naturally he revealed himself to be a trained professional, and a stainologist,
too! A licensed stainologist! (I would not have an unlicensed one on the
premises.) He looked like Wayne or Garth from those old movies. Heavy metal
listener, I should hazard. Serious butt crack. Fond of the Krispy Kremes, too, I
would guess by the looks of him.
I showed him a stain on a rug, a spot about the size of a dime. He threw
himself upon it, displaying, above his jeans line, the crevasse derriere that so
often marks the true trained professional. He fixed one bloodshot eye to the
stain at quite close range and began robustly sniffing it. Both of my cats,
admirers of trained professionals whenever they meet one, joined him.
He sighed and asked gravely, "What is the stain?" I told him that I thought it
might be coffee, and he nodded sagely in a manner normally reserved for grand
rounds. "Was there cream in the coffee?" he interrogated.
Yes, I said, there probably was. He emitted a slight sigh and nodded gravely
again. "Sugar?" No, I assure him, I don't like sugar. His face softened. "I'm
not sure that there would have been anything we could do for you (he tended
toward the imperial use of we) if there had been sugar in that coffee," he
announced.
The licensed stainologist was in the house for more than an hour, and it was
time lost. I work at home, and this guy was more distracting than four Jehovah's
Witnesses on a hot July morning. He interrupted me continuously, elaborately
explaining every procedure. (This is part of the psychology of the trained
professional. He suspects you think him a charlatan, a mountebank, a fraud, so
there is a lot of hocus pocus involved in his presentation. The hand is quicker
than the eye.)
The cats followed the licensed stainologist as he moved about the house,
fascinated. He culminated his performance, and it was a performance, by
attempting to sell me an exotic chemical stain remover -- not available in
stores! -- that smelled like rubbing alcohol to my untrained proboscis.
Not a week had gone by when, one morning, I looked out the back door to see a
possum the size of Old Yeller sitting atop my grape arbor at the back of the
garden. Without thinking, I called animal control.
They used to be dogcatchers. But now they are trained professionals. My call
was passed around a bit until, finally, I reached the dispatcher and told him my
problem.
"All the animal control officers are out," he told me. "No telling when they
might be back." He advised me to call again later in the day, when there was a
good chance one of the trained professionals in his office would be back. (There
was also a good chance that the possum would be gone then, too.) He asked me to
describe the possum and his whereabouts in more detail. "He's in the grape
arbor," I repeated. The dispatcher said he did not know what a grape arbor was.
"It's sort of like a trellis," I added.
"Trellis?" he asked.
"Yes, like a trellis."
"Sounds like it might be high up," he said. "And we don't have a ladder."

I am full of questions, and I do have another one....I taek
Meloxicam as my anti-imflammatory...and some days it helps, but
other days, its like I am not taking anything at all. Does this
happen to anyone else with PA ? I am finally going to see a Rheumy
on the 29th, and I also would appreciate any tips on what kinds of
questions to ask that might help.
Thankyou all very much
Alice

In a message dated 11/4/2004 1:47:54 PM Eastern Standard Time,
raharris@... writes:
I've been to two different acupuncurists in the last several years and have
found the experience to be very positive. The next time I am in a serious
state I'm sure I'll go back --
RA Harris, North Jersey Lowlands
Hey Mr. Harris
Glad to see you posting again. Hope you are doing well. I guess you can
see how many new members we have here. What meds are you taking now?
Janet

Hi Cheryl;
Did you try ACAM.org ,if not, once you are in the site pick
"public"If no AP doc around the list also has holistic and alternative
docs. Lynnd G. /SD

Oh no, thank you bjorn, for the update. I'm sending
many thoughts and healing prayers your mother's way
and wishing you all the strength you'll need to get
through this difficult time.
Warm blessings, Jane

Hello! Let me introduce myself.
My name is Tracy. I am the mother of two children ages 5 and 3.
I am the wife of Heath for almost 7 years.
I have not been diagnosed formally with psoriatic arthritis but, I am
begininning to believe this is what is ailing me for years. I am 26
years old.
My mother told me that at birth I had Psoriasis down to my waist and
that the doctors at first could not figure out what it was. This was
back in 78. Well, I grew up constantly dealing with this. Itching,
scales everywhere. It was a lot worse when I was younger. I remember
my Mom having to comb my scalp with this stuff called PS liquid or
something like that to get rid of the build up of scales on my head.
I also have it in my ears. I have patches on my tummy, breasts,
elbows and backs of my arms all over. It is embarrassing to say the
least. I also have aches and pains that are getting worse. I am only
26 but, I am not kidding, I really do hurt all the time. My knees,
my neck, my back, all my bending points of my body and my hips too.
I will admit I am a little over weight too which probably does not
help but, I am still achey just the same. Also, the Psoriasis in my
ears is so bad right now. I tried this cream called Devorox (sp?) and
it doesn't even help me. (sigh*) I just don't know what to do. Is
this all normal?
Also, my back has been hurting sooo bad lately. The lower part and my
ribs too. My doctor gave me skelaxin and Tramadol and it didn't even
help one bit. Now I am on Fiorcet and Flexeril and that is helping
but, not enough. What is wrong with me? Why can't medicine work on
my body?
I am so desperate for some answers.
Thankyou, Tracy

Hi. I am Marie and was originally diagnosed with RA at age 17. I was
re-diagnosed with PA 4 years ago. I am aged 46.

Question for methotrexate users...
My doc increased my dose to 20 mg in early September.
After previous dose increases, my body grew accustomed
to the dose in 2 to 3 weeks.
This time, my body refuses to adapt to the 20 mg dose.
It's been 8 weeks since the dose increase. It's as if
I never started the treatment! I'm having what feels
like a major flare, with renewed pain in known problem
areas and new pain in previously unaffected areas. I'm
also getting skin scaling again, which I had not had
since I started the MTX. Mouth ulcers that just won't
heal. Constant fatigue. etc. etc. (see my previous
rant for details.)
I called the doc's office about 3 weeks of this, and
the nurse told me to take my meds and ride it out. (I
was not amused.) It's not resolving. Next appt is
Friday. I'd love to be able to put this in context as
either "somewhat normal" with that dose of MTX, or
total abnormal when I talk to the doc.
Has anyone experienced anything similar?
-- Allison
=====

Hi,
I just got off the phone with my step daughter ,she has some kind of a
reaccuring lung inflamation that seems to be baffeling the Dr.s she has been
tested for lupus &some other things I can't spell but no answers .Was wondering
if
anybody had any idea what would be causing it? She has a apt at the
university of washington on the 25th
she is describing something simaler to my reactive arthritice but hers is
always in her lungs
they have taken biopisys but don't know the cause.
any ideas?
bonnie in seattle

Okay, folks, it's my turn to vent, so fasten your
seatbelts. It's been a long hard day, and I'm
especially cranky. I'm not looking for sympathy
(although ya'll are great at providing it!). I just
need to get this off my chest.
I've been a little grouchy at work lately, and I'd
love to tell some of my co-workers exactly why my fuse
is so short. While my boss is cool and understands my
ups and downs, some of my co-workers are less
understanding.
The chronic pain tips that were recently posted here
are wonderful and extremely polite, but if I could
tell my co-workers how I really feel, I'd be tempted
to use language I think they'd more easily understand:
Have you ever had cramps?
Try having them wrapped around one side of your face
and down your back -- for the past 14 months.
Have you ever had a hangover?
Try having one every Wednesday morning -- without
having any fun the night before.
Have you ever smashed a knuckle against a doorframe?
Try having that pain in your hand every time you click
the mouse or pick something up knowing that you have
to work on the computer all day, and when youre not,
youre packing or unpacking boxes of books.
Have you ever dropped something heavy on your foot?
Try having that feeling in your foot every time you
put weight on your big toe - if it were you, youd
trade in your stylish high-heel pumps for Birkenstocks
in a skinny minute, too, honey.
Have you ever had a mouth ulcer?
Try having one on the side of your tongue for weeks at
a time -- so that every time you chew, swallow, or
speak, the ulcer scraps against a tooth.
Have you ever caught the bug that's going around the
office?
Try catching every single one of them because you've
chosen to cripple your immune system rather than let
your immune system cripple you.
Have you ever been reluctant to be seen without
makeup?
Try waking up two or three days out of seven with your
eyes so red and your skin so tender than you can't
even think about putting on mascara, much less "the
works". And stop freaking out that I'll give you or
your precious kid pink eye. I'm not contagious.
Have you ever obsessed over that extra pound or two?
Try getting used to a 30-pound weight gain you can't
control with diet and exercise -- and it's gonna keep
going up a pound or two every month, whether you work
at it or not.
Have you ever had a bad night's sleep because you just
couldn't get comfortable?
You've just described every night of my life. Im 41,
and I feel 85. And you wonder how I got up on the
wrong side of the bed.
Thanks, ya'll. I'm sure you can relate. (And I feel
much better now that I've got that off my chest.)
-- Allison
=====

Hi Bonnie;
Have they checked for Sarcoidosis? It often affects the lungs but is
very difficult to diagnose.Could she just have something as simple as an
allergy to something she is breathing? Lynne G. /SD

Rachel - most studies I have seen target onset before 35 years old. I think
your age survey shows that it's pretty true!
Tiffany

Hi
I'm Della and I am 44 and am in UK.
I have been to two rheumatology appointments in the first one I was
told I had OA and went and got a book on arthritis. Read the bit about
PA and was gobsmacked that my symptoms were so similar.
Went thru my history with my GP who confirmed it could be PA as I have
in the past had nail P, Scalp P and pustular P but havnt had any P
symptoms for a number of years.
I went to the 2nd appoitment and was told that I dont have OA, that
it couldnt be PA, but is Fibromylgia. So at the moment I dont have a
confirmed PA diagnosis.
But as far as I am aware Fibromyligia doesnt affect the finger an toe
joints next to the nails.
Amongst my problems areas over the years are joint nearest bigtoe,
sacrolilac pain, pain in knee, both elbows left tennis elbow (not at
same time) left currently feels like someone is sticking hot pins in
it when I used it , tendonitis Achilies, and burstitis on top of right
ankle, numbness in neck and left hand little finger and ring finger. I
could probably go on but I'm sure you have all lost the will to live.
Has anyone else been diagnosed in a similar way, at moment am being
treated for Fibromylgia 10mg Amitriptolyne at night and Paracetalmol
and codiene for pain if I exercise. Been told to exercise as much as I
can LOL with family and work etc not easy.
Oh well thats me.
Regards
Della

Dear Janet, I wish I could say the injections worked wonders, but so far if
anything I've been worse. My left side is just miserable. My
erythromelalgia is off the charts and at times I swear my hand is going to
burst into flames. Last night I just coated it in menthol cream until the
redness or the pain left and it literally froze the skin I think. It
helped for a short time and at least allowed me to get some sleep.
I'm wondering now if the shot has actually caused the inflammation to get
worse, before it gets better. Lots of times when I get a prednisone
injection my joint that got injected hurts worse for at least a week, and
this could be what I'm feeling. Hopefully, it should let up if that's the
case.
As far as pain management goes, the best thing about them is you aren't
alone with your pain. You don't have to worry about annoying the doctor
again for a prescription, they re-write my pain meds before I even get there
most of the time, there is someone to discuss just the pain with and how
it's been worse or better, if the emotional side gets too bad there is
psychiatric help on staff so you can reach out to a specialist to talk too.
( On the topic of a counselor, it's not that you think you are crazy and
need drugs, it's that the pain can cause such problems in your life,
sometimes you might need to find somehow to help you deal with it. So far
I've not used that part of the clinic, but more and more I'm considering
it.)
It is true that you have to do certain things or sign a form agreeing to
their rules. But with the abuse and the federal laws they have to work with
the system, as you know. So far I've never been drug tested, though they
could do it anytime and I'd say ok. They also know that I don't count on
pain management to be my only answer. If they offer me a new source of
treatment, I'm always willing to consider it and usually I try it.
Finding a good doctor is hard no matter what you are looking for, but so far
with pain management, I've seen 2 types of doctors. There are the ones who
simply want to help people feel better, and they get very close to burn out,
and there are the ones who only want to make money. It doesn't take long to
figure out which type you have.
The best thing you can do is ask around. Usually the good ones people talk
about, and the bad ones people scream about..lol. Then just go and see if
it's something you want to do. My doctor offers physical therapy of all
types, injections, and different types of treatment. But they don't push
anything at you or make you feel bad if you don't want to try something
either.
I'd write more Janet, but my hands are really bad today. If you have any
more questions just let me know. It's worth looking into if you pain isn't
under control. The only thing you have to lose is the pain. Take care,
Love, Fran
Hi Fran,
I am very interested in this pain management group. Can you tell me a
little more about it. Do they just treat the pain by medication or are
there
other methods they use as well. I know today got very cold here in NY
and my
joints are aching. I am ready to dip my feet in the parrafin bath again.
Hope your injections are going well.
Janet

Ute, I sent the following information out to my family mid-September. The
2006-2007 batch is due out sometime the last half of this month.
Influenzinum is available several places on the net with prices ranging from
$6.49 to $20.
Tips for helping you get through the cold and flu season:
Hygiene: Wash hands often - especially before eating and after using the
bathroom. Avoid shaking hands. Keep hands away from face.
For maximum results with the following suggestions, it is assumed -
- you already have a healthy immune system through eating a healthy diet
and taking
appropriate supplements.
- you drink a minimum of two (2) quarts of filtered water daily. Water
carries nutrients to the
cells, flushes out toxins and lubricates the joints.
- you have two or three normal bowel movements daily, and
- you get 7 to 8 hours sleep nightly
FLU: For prevention:
Influenzinum 9C by Boiron - a homeopathic to help resist and prevent the
development of flu symptoms such as fever, chills, body aches and pains,
minor sore throats and congestion. Contrary to flu vaccines which can cause
multitudes of unwanted side effects, Influenzinum 9C is all natural and
safe. It is said flu vaccines may be effective approx. 68% of the time
whereas Influenzinum 9C is effective 90% of the time. Take before flu
season starts. Just like the regular flu vaccine, Influenzinum is made
fresh each year and is available from mid to end of October.
Dosage: Influenzinum 9C comes in a multi-dose pak of about 80 pellets.
Adults and children over 2 years of age dissolve 10 pellets under the tongue
once per week for 4 weeks then wait three weeks and dissolve 10 pellets
under the tongue for the final dose. Call Boiron for closest distributor to
you. Boiron - 1-800-258-8823. For the 2006-2007 season in Florida and
Georgia, Influenzinum may be ordered from Weston Pharmacy in Weston, Florida
1-877-832-7879. Be sure to ask for the fresh batch. Price as of October
2006 is $6.99 per pak
Flu Treatment
1. Oscillococcinum: At the first sign of the flu, take one tube of
Oscillococcinum - a homeopathic by Boiron. Take two more tubes at six hour
intervals. Oscillococcinum is very effective if taken at first sign of flu
symptoms. Best price September 7, 2006 is from www.luckyvitamin.com in
Pennsylvania - 6+6 or 12 dose pak for $12.39. Order homeopathics in the
summer or early fall for best pricing. Most good health food stores carry
this product. Price increases as season progresses.
2. Drink copious amounts of filtered water. If necessary, replace
electrolytes with Gatorade.
3. Echinacea/Golden Seal - 2 capsules three times daily for up to 7 days
maximum.
4. Take 1,000 mg. of vitamin C every waking hour.
Treating Colds:
1. Vitamin C - Take 1,000 to 2,000 mg. of vitamin C every hour until the
onset of loose stools.
Some people can take as much as 20,000 mg. before loose stools occur.
2. Drink copious amounts of filtered water.
3. Echinacea and Golden Seal - 1,000 to 1,500 mg of Echinacea & 100 mg. of
Golden Seal
every four hours at the first sign of a cold. Do not take Golden Seal
longer than 7 days.
4. North American Herb & Spice Co. Wild Oil of Oregano (anti-viral) - three
drops 3-4 times a day. (www.needs.com or www.vitaminshoppe.com )
Colds and flu are from viruses. Other anti-virals would include garlic,
aloe vera (Aloemaster) and olive leaf extract - www.seagateproducts.com;
Carvacrol from Premier Research Labs www.vpnutrition.com - 1-877-335-1509.
Carvacrol is said to be stronger than North American Herb & Spice Oil of
Oregano.
Here's something else you can try from Joseph Mercola, D.O. in Illinois for
colds and flu. Our family has used this successfully.
"From what we have read, hydrogen peroxide works quite well and is supposed
to be effective 80% of the time, especially if done when the symptoms first
appear. While it seems contrary to what we have been taught about colds and
flu we know quite a few people who have tried it with great success.
In 1928 Richard Simmons, M.D. hypothesized that colds and flu virus enter
through the ear canal. His findings were dismissed by the medical community.
According to Dr. Simmons, contrary to what you may think or have been taught
about how you catch the flu or the cold there is only one way that you can
catch the two, and that's via the ear canal not through the eyes or nose or
mouth as most have believed.
Keeping your fingers out of your ears will greatly reduce your chances of
catching them, but then again these two are microscopic and can be air-born
and may land on or even in your ear. Once they have entered the inner-ear
(middle-ear) there they begin their breeding process, and from there they
have access to every avenue throughout our body to travel to and to infect
and make us sick.
In 1938 German researchers had great success using hydrogen peroxide in
dealing with colds and the flu. Their data has been ignored for over 60
years.
It is important to begin treatment as soon as symptoms appear. If treatment
is started promptly effectiveness seems to be in the 80% range.
We have found remarkable results in curing the flu & cold within 12 to 14
hours when administering a few drops of 3% Hydrogen Peroxide (H2O2) into
each infected ear, (sometimes only one ear is infected) The H2O2 starts
working within 2 to 3 minutes in killing the flu or cold; there will be some
bubbling and in some cases mild stinging occurs.
Wait until the bubbling & stinging subside (usually 5 to 10 min) then drain
onto tissue and repeat other ear. A bottle of Hydrogen Peroxide in 3%
solution is available at any drug store for a couple of dollars.
Although this method is perfectly safe for infant/children to use, the loud
bubbling and stinging frightens them, they'll need someone they trust to put
the hp in their ears. (don't get h2o2 in the eyes- if you do, flush with
water)"
Here is another flu prevention/flu treatment protocol from
www.cqs.com/inflluenza.htm
"1. The best way to prepare for influenza is by enhancing the immune system
and increasing the amount of vitamin C in the body. Begin by increasing the
amount of vitamin C you take daily to very high levels, spread out over the
day in divided doses taken with meals. Start at 1,000 mg per meal, and
increase slowly to 2,000-4,000 per meal. These are adult doses. Modify by
weight for children. Your optimal dose is just below the point where your
body complains by giving you mild diarrhea. This is called the "bowel
tolerance dose." Such doses are perfectly safe - vitamin C is natural to
our bodies and needed for many body processes. Most people do not get
enough. Stock up on this vital nutrient - buy in powder form, 1 pound or 3
pound canisters (ascorbic acid form). Mix with water or fruit juice. Be
sure to take vitamin C with food that will coat your stomach to prevent
stomach upset.
2. Take 6,000 mg. of amino acid lysine per day, 2000 mg. per meal (adult
dose - modify by body weight for children). Lysine is a natural protease
inhibitor - it prevents bacterial and viruses from spreading in your body.
Powdered form (NOW) is least expensive.
3. Take a high-potency multivitamin/multi-mineral tab, and a
calcium/magnesium supplement, every day.
4. Drink at least 2 quarts of non-caffeinated liquids per day. Spring
water and/or decaffeinated green tea made with spring water are best. Do
not drink diet soda or consume anything with aspartame or other artificial
sweeteners.
5. Stock up on other anti-viral agents and nutrients: l-proline and
l-glycine (amino acids - at least one pound of each, in powder form),
tumeric extract capsules, ginger capsules, garlic capsules, 15 mg. zinc/1
mg. copper capsules or tabs, oil of oregano, decaffeinated green tea and
N-acetyl Cysteine. (Note to expectant mothers: Do not use oil of oregano
as it is an abortofactant, and please obtain Chi Organic Green Tea Extract,
available from vitaminlady.com, to avoid fluoride.)
6. In advance (right now), find a chelation or alternative health clinic
that is willing to administer intravenous vitamin C infusions. This may be
necessary if you are stricken by the flu and find that you cannot keep up
with it with the oral dose. (Refer to Dr. Robert Cathcart's intravenous
vitamin C preparation document if the clinic needs this information:
http://www.orthomed.com/civprep.htm.)
7. If you become ill, start increasing your vitamin C dosage dramatically -
your bowel tolerance dose will rise as it is used to detoxify your body from
the virus toxins; it may rise to as much as 100,000 - 200,000 mg (100 to 200
grams) per day (adult dose). Take up to 4,000 mg per dose, with increased
dosages. Start taking 12,000 mg of each of l-lysine, l-proline and
l-glycine per day, in divided doses. Take 1,000 mg of oregano, 4,000 mg
tumeric extract, 4,000 mg ginger, 4,000 mg garlic, 45 mc. zinc/3mg copper,
1500 mg. N-acetyl cysteine (NAC), and 2,000 mg green tea per day - in
divided doses. Increase fluid to 3-4 quarts per day. (These are adult
doses, modify by weight for children.)
Eat easily-digestable meals complemented with ½ scoop whey protein shakes.
Continue this regimen until all signs of illness have subsided. If the
illness is not controlled by this regimen, obtain a series (2-3 per week) of
30 gram vitamin C intravenous infusions at a chelation or alternative health
clinic - with higher dosages if necessary for pneumonia or previously
compromised immunity (e.g., AIDS or CFIDS). (Important: See note above
regarding use of this regimen during pregnancy; do not use oregano oil
during pregnancy.)
8. If you are currently taking Lipitor or another cholesterol lowering
(statin) drug, stop taking it immediately. These drugs are very damaging to
the immune system. The above vitamin C and lysine regimen will (through a
completely different mechanism) naturally balance your cholesterol and
protect your heart from disease. If you continue to take a maintenance dose
of 6,000 mg. of vitamin C and 6,000 mg. l-lysine per day, you will never
need to take statin drugs again. (For more information on this . . . . . .
. ., http://www.mercola.com/article/statins.htm.)
9. You must take the regimen above every day, consistently. After the
danger period has passed, I recommend that you continue the regimen at the
level of 6,000 mg vitamin C and 6000 mg lysine per day (adult dose, modify
by weight for children). You will enjoy better health, lose fewer days to
illness, and protect yourself against heart disease. (If you chose not to
continue the regimen, please taper off gradually. Use your stocks of
anti-viral nutrients for any illness you may encounter."
For a list of physicians offering chelation or IV therapy, see www.acam.org
Physician referral line is open Mon. - Fri. 8 am to 12 noon PST.
1-800-532-3688
One of the cheapest places to purchase powdered vitamin C, l-proline,
l-lysine, l-glycine, tumeric (curcumin), ginger, etc. is www.iherb.com.
Dr. Matthias Rath (along with Linus Pauling) developed the lysine, proline,
vitamin C program to protect the heart.

Alice: I tried taking Meloxicam and it was like I wasn't taking anything at
all.. well maybe 50% of the Bextra. I am on Bextra (20mg/day) and it works
consistently. I take 20mg twice daily when I need to play guitar the next day. I
think 60mg would do very well but I just don't want to take such a high dose.
There are lots of choices and I think they all affect everybody differently.
Dave

do you have irritable bowel syndrome?
yes
no
maybe
do you have Ulcerative colitis
yes
no
maybe
do you have Chrons disease
yes
no
maybe
do you have a bowel disorder not mentioned?
yes
no
maybe
do you frequently suffer from constipation
yes
no
do you frequently suffer from constipation & diarrhoea
yes
no
do you frequently suffer from diarrhoea
yes
no
do you get slimy stools
yes
no
do you get mucus in stool
yes
no

These pads sound very interesting the site doesn't say where you can purchase
them. Debbie, where did you buy yours?
Carol Fisch, Emeritus Adjunct Professor of Laboratory Science,
Researcher, Medical Laboratory Advisor for Tick Born illness testing and
education to others regarding Tick Born illness.
Well, versed in Microbiology, Immunology and Parasitology with an excellent
understanding of Cell Wall Deficient Organisms (CWD) . I give information and
learn from others every day.
We all must be all be open to learning as none of us have all the answers,
actually we are just beginning to dig deeper and have a better understanding of
the many complex issues that are effecting our health.
Each of us need to share the pieces of the puzzle we are finding; that way we
may eventually come up with the whole picture.
Eight members of my family have TBI and I am a former support group leader.
Researcher, Teacher, Advocate and Activist for those suffering from TBI. Carol

Hi all,
I was just looking through the Gaiam catalog and found they are selling
'body purifying foot pads.' I wondered if they were the same things we've
been discussing the last few days. They come ten to a box, are 3"L x 2"W,
and cost $30. (go to www.gaiamliving.com to see the pads in action)
I get regular Ions cleanses with my acupuncturist. I wonder if these pads
do the same or similar thing. Does anyone know? El

Hi, Tracy. Although you COULD have PA, the most important thing you need to do
is to get under the care of a skilled rheumatologist and get a proper diagnosis.
Until you do that, you will likely be put on medications that don't do much of
anything.
Assuming you DO have PA, there are a number of possible treatments. There are
medications available that have given some people a new lease on life. Nothing
works for every one because everyone's body is different, but one of the DMARDS
or biologics may work for you. After seeing a rheumatologist and getting a
diagnosis, we can certainly share our experiences with the medication your
rheumy thinks you should be on. The sooner you get diagnosed and treated, the
more likely you are to be able to slow down the progression of the disease
before it does irreversable damage.
Wishing you wellness,
Kathy F.

At the present time I am 73 years old (perhaps the oldest in the
group?). I was diagnosed with psoriasis when I was 35 years old.
Diagnosed with PA about 3 years ago. In fact I diagnosed myself by
looking at the psoriasis web sites and this site to determine what
was ailing me. I beleive that I have had undiagnosed PA since I was
52, therefore I went thru all sorts of pain and problems for 20
years, especially in my feet. So many Dr.'s I visited didn't have a
clue. Now I have a terrific rheumatolgist, I am on remicade and it
has done wonders for me.

I tried Acupeds first but they are expensive
discovered doing research the best detox pads are from Japan
so found these
http://www.healthmarvels.net/<http://www.healthmarvels.net/
used one last night with cayenne pepper in it and put on ball of my feet - I
wasn't stuffed up this a.m.
I bought several different types

Allison,
Sorry to hear you've had such a difficult day and please feel free to vent all
you want. Encore, encore!
One of the things that helped me overcome my anger at the indifference of others
was the realization that I was wrong to EXPECT others to understand. I can't
really understand the agony of losing a child because I've never lost one. I
can't understand the horrors of war because I've never fought in one. I can't
possibly know what it is like to be black in America because I was born white.
No matter how well intentioned I may be, I will never fully appreciate what many
people go through. It doesn't make me a bad person, it just means that I CAN'T
possibly understand their experience. So, if I can't understand their
experience, why would I expect them to understand mine? It doesn't make them
bad people, it just means that they can't appreciate what it is like to live
with chronic pain since the age of 16 because they haven't had to. So - I no
longer get angry at others for not understanding because it was wrong of ME to
expect them to understand. My problem is not theirs, just as their lives are
not mine. Realizing that really freed me from a lot of anger and frustration.
In any case, I hope you feel better and please feel free to let off more steam
as often as you'd like!
Wishing you wellness,
Kathy F.

I have PA, or as my Rheaumatologist puts it: Inflammatory arthritis
and Psorasis since there doesn't seem to be any one diagnostic tool
that gives the PA Dx definitively. I've got it bad, rapid onset and
unremitting for the past 3+ years. :( Someone told me about a book
written by a chiropractor called "Healing Psoraisis Naturally" which
follows an "alkaline" (vs "acid") diet- in a nutshell: 80% of your
diet being fruits and vegies and the other 20% meats, starches, fats.
Even in the book it says that PA is very difficult to treat and
doesn't promise the diet will 'cure' PA. Regardless I have been
following it and thought for a while my Psoriasis was a little
better, but it didn't last. Anyway I am losing weight and figure it
won't hurt anything so I'll keep following it. I was just wondering
if anyone else is following said diet and if they have any positive
experiences to report. Thanks.

Hello Mary,
Thankfully I haven't had any more of these episodes since I reduced my minocin
intake but I'm still scheduling an appointment with a neurologist and an eye
doctor. I'll post an update once I get a diagnosis. Thanks for your email !
Yesenia
samorgblu <arzona.mf@...
Yesenia,
Please see a neurologist as soon as possible. In the meantime try not
to bend down if you can.
Wish you lots of luck and and please let us know.
Mary

Hi! Yesenia,
Delighted to hear the good news. Thanks for your response.
Mary

fyi, interesting article
http://www.xagena.it/news/medicinenews_net_news/b04f44eace1a193f15006e8a8a45624e\
.html
DanB

How are you feeling today? I hope it's a good one for you.
Owen won't 'talk' online. I'm not sure why, but I continually get
the "I might later" reply. He's been great, though. I think back to
when I was 14, and if that if it was me, I'd probably be an angry,
teary mess. That's not to say he doesn't get bummed out, but he seems
to get over it after a big cuddle.
It's all been so quick. Besides the 1st toe (which was thought to
be bone cancer), everything was quiet until late August, when a big
toe came up. Since then PA has ripped through him, and still is, even
though he's on mtx injections. He looks like being in a wheelchair
soon, I'm piggy-backing him around, sometimes, and he can't go to
school, even though it's that close, we can see it from the
frontyard. I do know something will slow the bone eating soon.
Love Leanne

Has anyone gone to Mayo Clinic/Jacksonville seeking treatment for PA or
Fibromyalgia? I made an appt. to go yesterday, as I am sooooo frustrated with
my
current rheumatologist. Could you share your experience?
RJ

In a message dated 11/2/2004 5:46:37 AM Eastern Standard Time,
lbschroeder@... writes:
Also the recent threads about Vitamin D have given me some thoughts. I
never drank milk. Hated the stuff.
I also hated mild and never drank it. I did have other dairy products. I
wonder if there is a connection.
Janet

Thank you all for your responces to my Enbrel question, especially Ronnie. I am
going to
be able to give this a try with a little less aprehension because of you all.
btw... I am 45 and have have been dealing with PA for over fifteen years
although it wasn't
officially diagnosed as such until about 12 years ago. I have been dealing with
P for over
20 years now. This all started, for me, after a blood transfusion for a back
surgery.
Tom in Anchorage with 16 inches of snow and -5 degrees F this am...

answers below. I have pa, fibromyalgia, osteoporosis, diabetes and ITP,
migraine, stress/depression and a oesophogeal ulcer because of all the
anti-imflamatories I was given in the 80s..

Hey, Greg.
How are you? I'm writing to respond to your posting. We live in
Tasmania.
You also wanted to speak to someone who's had PA since they were in
their teens. Well, we're sort of that. I'm the mum of Owen who has
severe PA, he's 14 now. He's only had it for about 9 months.
Where do you come from? We've lived here for 2 years, having moved
from NSW, north of Sydney.
Anyway, if we can help, just let us know.
Leanne

This article appeared in today's paper in Vancouver, BC.
Has anyone tried this medicine called "Amevive" or heard about
whether it benefits PA as well? It sounds like it might be
beneficial because it effects the immune system:
New medicine has 'major impact' on psoriasis
Mario Toneguzzi
Calgary Herald
Tuesday, November 02, 2004
CALGARY -- The first new medication for psoriasis in more than a
decade has been approved in Canada.
Dr. Kirk Barber, a Calgary dermatologist, said AMEVIVE is a biologic
medication showing a major impact on patients with moderate to severe
conditions of the disease. Psoriasis affects about one million
Canadians.
"The burden of the disease is significant," said Barber, adding that
it affects patients' quality of life similar to those with other
serious health issues such as heart disease.
"What has been developing over the past 10 years is that psoriasis is
not necessarily a skin disease only," said Barber. "Psoriasis has a
significant immunological component."
Barber was involved in the original research and first clinical trial
for the new medication four years ago.
AMEVIVE is a systemic therapy that works by helping to rebalance
overactive T-cells in the immune system. These T-cells are thought to
play a major role in the underlying cause of psoriasis. AMEVIVE has a
dual mechanism of action that includes selectively reducing the
number of these disease-causing T-cells.
"It has been a successful treatment," said Barber.
Allan Stordy, 45, of Calgary, participated in the clinical trial for
the medication.
"Anyone that lives with psoriasis and in the moderate to severe
category, you know that it has a fairly big impact on your life with
having this disease," said Stordy, adding the disease showed up on
the majority of his body -- on his arms, trunk and legs. "Up until
recently, there was no real clearing of sorts for your skin."
Following his last treatment, Stordy said he had "100-per-cent
clearing" which is "quite remarkable." "It's really a sense of
freedom," he said.
Stordy said he had clearing of the disease for seven months but now
it's returned and he may require more treatment.
The medication is administered through an intramuscular injection,
once a week for 12 weeks. Barber said patients then take a 12-week
break from medication. They can take another 12-week course of
medication depending on their response to the initial treatment.
Barber said the medication can reduce the severity of the disease by
75 per cent and further treatment can reduce it even more.
He said the medication can be combined with other therapies such as
light therapy and cream.
Psoriasis is an autoimmune skin disease in which skin cells multiply
10 times faster than the normal rate. It is characterized by sharply
defined, raised, reddened, scaly plaques. These plaques can be
painful, unsightly and persist for long periods.
PSORIASIS: SKIN CONDITION LEADS TO MENTAL ANGUISH:
According to a Canadian omnibus survey conducted in September:
1 in 30 Canadians have psoriasis, characterized by scaly patches of
varying size on the skin often affecting legs, arms, feet or scalp.
71% of respondents do not believe psoriasis to be contagious. But
more than a quarter of them said that they would be uncomfortable
hugging, kissing or getting into the same swimming pool as someone
with the disease.
10% of sufferers have contemplated suicide.
Next to congestive heart failure, the physical symptoms of psoriasis
have a greater negative impact on its sufferers than diabetes,
chronic lung disease and arthritis.
Source: Psoriasis Education Program
Ran with fact box "Psoriasis: Skin Condition Leads to Mental
Anguish", which has been appended to the end of the story.
© The Vancouver Sun 2004

Hello All- I have a question for everyone and I would love any responses.
I have been concerned about PA just like all of you and the affects it will have
on my future. I am 27 yr old female. I worry about not being able to carry a
child to term when I do decide to get pregnant, I worry about being in a
wheelchair if it gets to that point, but my main WORRY is how the PA attacks are
immune system and joints...I have a red belly button where my Psoriasis is..it
gets dry and flaky and I have spots like this in certain places all over my body
(luckily all hidden places) and it got me to thinking...If this inflammation is
all inside my body and attacking things, can it attack my organs? Is my heart
alright, is my brain ok (as I have the P covering my scalp)??? My father had P
(never diagnosed with PA but always spoke of pain in his hands and feet and
back). He went to a doctors appt for a physical because he was feeling fatigued
and tired all the time. They found he had heart disease. They gave him 2 years
to live at that point. They said a "Virus" settled in
his heart which attacked the muscle of the heart making it not beat like it is
suppossed to. Could the virus have been from the PA?? I mean it's a long shot
but I am kinda worried about this. What do we know about PA attacking main
organs? Does anyone know of anyone that has experienced this? I am worried about
the disfigurement of my hands and all my joints, but what if I should be more
concerned with it attacking my more major organs?? I would love to hear any
responses or any thoughts anyone has on this subject.
Scared in Indiana, Lina

Hi everyone
My blood results are good too, i think that is from medication (salazopyrin
and tetracycline) tested after nearly 2 months on meds - so the drs think
there is nothing wrong with me! I hate them. There is never any "fluid" type
swelling but, my knuckle bones are gigantic and weird looking - anyone know
how to get them back to normal?
Ken, sounds like you are in remission?
Tamara Trenka
Senior Property Manager
Ian McNamee & Partners Pty Ltd

Hi Lynne
I did a search on the Sickkids site and found the press release. Here's a link:
http://www.sickkids.ca/mediaroom/custom/diabetesopen06.asp
Hugs
Paula

age 36 years.. PA for year and half

Carol,
Can you get the Minomycin or TEVA brands in the UK? We have received
good reports on both of these alternatives to the former Minocin by Lederle.
Sincerely, Harald

Dear Susie, I don't think I could have taken the eye rolling thing when I
was describing my pain. That is so rude it's unreal. Not to mention
extremely unprofessional for a doctor. I know doctors must talk about their
patients after we leave with their staff and that's really something that no
one can help. But in front of you when you are trying to communicate your
pain to her!!!! I would be running to find another doctor.
I do think out of all the arthritis types out there, PA isn't the most
common. From your descriptions though she should have at least diagnosed
you with RA, and then you would have been on a similar treatment plan. My
family doctor never did get PA right, but he did at least tell me he knew I
had at the very least RA, osteoarthritis, fibromyalgia, and some other type
he couldn't figure out. I have no problem when I doctor tells me he doesn't
know. I just hate it when they act like they know everything and won't
admit that they are lost with my problems. The worst thing a doctor can do
in my opinion is not know what is wrong with their patient, and yet still
not refer them to another specialist to find out. Lets face it they can't
know everything, and some of them are highly specialized. The least they
can do is pass us on to someone who can help us. The least she could have
done was research your symptoms on the Internet and even then would have
come up with PA just from the description you gave in this email. I think
she had you lumped into a chronic complainer, if she didn't believe your
pain was real, why would she believe your other problems were real either?
Boy doctors sure can make me mad at times...lol. I would keep looking for
another doctor Susie and I know it's a real pain. I hate doctor shopping.
It's the last thing you want to do when you feel bad, but that's when you
need a good doctor the most. Well take care and I'm glad you at least told
her off on the diagnoses. Love, Fran

Chris and group.....I hope this email will be removed from our digest.
Honestly, it really bothers me to have something like this show up on our
digest.
Susie from Oklahoma

it sounds as if he has psoriatic arthritis . as u know it is so hard to
diagnose . you should get him to a rhematologist as soon as possible .
unfortunately most of the joint da mage occurs early in the disease . the
doctors could at
least put him on mobic or an anti inflamatory before too much damage occurs .
i feel bad he is so young. yes we do know that there is a familial component
to the disease and since u have it he is showing early signs of the disease .
get him some help as soon as possible
cathy from ma.

What is the email address Susie? Then I can ban them.
Chris.

Hi Greg,

Hello to everyone,
There have been so many posts to catch up on lately that I spend more
time reading them leaving less time to post. Welcome to all the
newcomers. Martin - thinking of you during your hospital stay. Orin,
good to see you posting again.
I wanted to post a warning about not taking infections seriously when
you're on biologics. On Nov 4 I managed to cut my left index finger
while washing dishes. It didn't bleed much, barely cut the skin, so I
didn't think much about it. On Nov 8 I did my Humira shot, and the
next morning woke up to a hot, red, swollen finger, unable to bend
it. I felt silly about it but went to the doctor who was quite
concerned and glad I came in when I did. I'm now finishing up a 10-
day course of antibiotics (one that incidentally, causes joint and
tendon pain - what was my doctor thinking), and it's much better with
just some redness and soreness remaining. I'm going to be much more
cautious in the future with antiseptic applied to all skin breaks,
certainly never expected this from such a small cut.
I also reached a milestone, of sorts, and used a wheelchair to
navigate Walmart this past weekend, at my husband's insistence. I'm
too chicken to try driving a cart yet, so my step daughter wheeled me
around. What a different perspective from a sitting position - no
wonder small children are overwhelmed in there and want everything
they see - it's all in their faces :) It was a humbling experience,
but necessary, and well worth it. I actually had the energy that
evening to attend a local production of "Oklahoma" with my husband, a
rare night out as I'm usually crawling in bed as soon as I get home
from work (and it's not because I'm a newlywed Martin). Anyway, I see
the rheumies tomorrow, so I'll see what they think of my baseball-
sized ankle and how to proceed.
Warm blessings to all, Jane

I know this is an "orphan" disease and not much research is being
done. We get the drugs tested on us after they have been developed
for "bigger" diseases like RA. There's not much money to be made by
the drug companies on our disease as the numbers are not there.
I am the only patient my GP has ever had in his 20+ years of practice
with PA. He too did not diagnose me. I did it myself, asked for a
Dermy appointment and he comfirmed it and sent me to a Rhuemy.
Pharmasists are another group that may not have heard of it. I have
also found that nurses in hospitals don't know what PA is when
filling in my history when I'm in on unrelated matters.
Do not be too angry with your doc about the PA but it does sound like
her attitude needs some work in general.
Patti

For those of you who are using Vitalzyme and having success with it...I have a
question for you.
In the past I had tried vitalzyme, but found it almost impossible to put into my
schedule. Since it needs to be taken on an empty stomach and the minocin and
thyroid medicine need to be taken on an empty stomach, and the vitalzyme should
not be taken with other supplements or medication.....
How do you manage to use this product? And are you finding it successful with
inflammation?
Thanks,
Roni

Wishing we had something like that in Canada.
Crystal

I used Vitalzyme for several months - it did help me with pain and energy - had
to carry it w/me so I could take it.
but, I started noticing growths on my face - attributed it to my MCTD. Had a
facial in November and they told me the growths were from excess enzymes.
so stopped the Vitalzyme a month ago and all growths are gone - my energy is
lower but my pain level is ok.
Sandy
Beaumont CA
MCTD, on Ap 7 years

Thanks Sandy! I appreicate you sharing your experience with me.
Roni

Hello Pat!
My name is Leanne, I live in Australia, and I'm a member here
because my 14y.o. son has P.A. I understand how you're feeling, so
take a BIG deep breath.
It'll be okay, regardless of whether your son has PA or
something else. At the moment, the worrying is likely to make you
flare, so try to cross that bridge when you come to it. My son Owen,
has a particularly nasty dose of PA, and yes, it it dreadful to see,
but the strength these kids show, is amazing.
Please keep me posted, on how both you and he, are going
Love Leanne

Dear Kathy,
That was so well said. I'm going to copy your email and send it to my
daughter who has had fibromyalgia since she was 14. It has changed her life
so much and she deals with people who don't understand everyday in college.
It gets to the point that if you cant' convince people how you feel, you
still have to accept yourself the way you are, whether they do or not. I
understand how Crystal feels and everyone has days when we want to shoot a
person for being so ignorant about our disease. But you are right, it isn't
their disease it's ours. Hopefully, in the future people will understand
what a chronic illness is like, but I think I'd rather think of a future
where chronic illness just doesn't exist.
Take care, Love, Fran

I was introduced to Chiropractic care after being rear-ended last thanksgiving.
My
Chiropractor uses an electric stimulation device that really seems to do a
number on
muscle pain and stiffness. My son and I went to our state fair this past fall.
There is always
a pavillion with vendors of all types. This year there was a couple selling a
portable device
that does the same thing as what my Chiropractor has. I bought the device and it
seems to
help along with the meds prescibed by my docs. Has anyone else found electrical
stimulation to help?
Tom in Anchorage

Hi Kim,
I think the AP may be very helpful for your thyroid. I was diagnosed with
Graves a few years ago and almost started the AP then. I wish I had. At
that time I did not know I had Lymes and that as a result I would be
diagnosed with Lupus and RA as well as develop Raynauds and Sjogrens. I
truly believe all those will go away with the AP and other things I'm
trying.
For my Graves, I took Tapazole pills (vice radiation) and my thyroid
normalized within a year. I have not been on any meds for thyroid for
several years. Previously I was hypothyroid and I took Armour thyroid. I
then had a very stressful eight months and found myself supposedly with
Graves. Yoga and focused breathing helped a lot during my Graves episode
and I continue to practice yoga. Thyroid issues run in my family but I saw
that radiation was not the quick and easy fix purported and the procedure
just never made any sense to me so I decided to use the protocol that all of
Europe and Japan use (the Tapazole) vice the radiation.
My acupuncturist recently introduced me to a couple of books about iodine.
There are a couple of doctors out there (and they've written books) that
believe that iodine deficiency is linked to thyroid issues as well as breast
cancer, prostate cancer, etc. Very interested reading. One doctor is David
Brownstein and his book is Iodine, Why You Need It. The other doctor is
David Derry and his book is Breast Cancer and Iodine. The theory is that
Americans are very iodine deficient but the belief is that we are not so no
one ever tests for it. (The test consists of collecting urine over a
24-hour period after taking an iodine supplement.) One doctor (Brownstein)
recommends an iodine supplement called Iodoral. I hope this info is useful
to the group. El

Dear Allison, my experience with MTX is limited since I had a bad reaction
to it. But being told to "ride it out and take your meds" would have ticked
me off to say the least. I think sometimes they say that just to get off
the phone. It's so frustrating when you turn to your doctor for some help
and have the door slammed in your face.
What ever you decide, when you see him again, figure out if he is the right
doctor for you. There are good ones out there, but it takes a long time to
find the right one. Good luck and I hope the pain gets better soon. Love,
Fran

hi my son was on a high dose of methotrexate his liver count went up
and had to come of it. but we where told about certain side effects
to report straight away and one was mouth ulcers ,i think, maybe
someone can confirm ,but is this not either your red cell or white
cell count going up and causing this, also if this happened they
would take a blood test to see and if it was he would be taken off
the medication immediately, go back to doc

Dear Janet, Sorry to hear you are still feeling so bad. Have you ever
tried Xanaflex at night for sleeping? My daughter who has such bad fibro
takes it every night. According to the doctor, (if he is correct and who
knows these days...) it isn't addicting or dangerous. It relaxes her
muscles and just puts her to sleep. She takes 2 at bedtime and doesn't get
up afterwards. Of course if you had small children, it would be hard to
take something like that. I'm on it as well, and only take 1 at bedtime. I
could increase it to 2, but I feel a little groggy the next day. Plus with
me, if my pain is bad I still wake up in about 2 hours. So it doesn't work
completely for everyone, but it has made a big difference in her sleep. I
just thought maybe it would help you. Hang in there. love, Fran

Age70, bouths fo arthritis since 1939, off and on all my
life,psorasis for 25 years, and dehibilating arthritis for 17
years. And yes the trerm Old Junk Car truly describes my
condition. On good days I am the Tinman and on bad days when it is
flaring I am old Junk

Hello, it's lovely to speak to you. My name is Leanne, and I'm the
mother of a PA sufferer (Owen 14y.o). We live in Tasmania, Australia.
Owen's Rheumy told us that the chemical in bone, that gets
attacked by your immune system, is also in certain blood vessels in
your eyes, the heart and lungs. Add to that the fact that mtx can
damage those same organs. In Sept (I think) Owen had an
echocardiogram, then had a full lung function assessment, and a
special examination by an Opthamologist. It will be repeated every 6
months. Please don't panic, if these things have an 'eye' kept on
them, your chances of problems are greatly decreased.
It's a really scary problem, but you will get loads of support
here, by people who are dealing with exactly the same fears.
I hope you have a good day.
Leanne

Patrice,
The following is the text of one of my earlier emails, slightly updated:
Carlson is the brand recommended and sold by Dr. Mercola. Carlson
sells two types of Norwegian fish oil in bottles: Carlson Cod Liver
Oil and Carlson Fish Oil. The difference is that the Fish Oil is more
concentrated than the Cod Liver Oil: 1600 to 1900 mg of Omega-3 fatty
acids vs. 1100 to 1250 mg -- almost 50% more. The drawback of the
Fish Oil is that it is also about 50% more expensive when sold in
16.8 oz (or 500 mL) bottles -- $30 vs $20. My assessment is that both
oils are about equivalent when measured in benefit per dollar.
Another factor is the availability of Lemon Flavor, which makes both
oils taste good as opposed to fishy. The Lemon Flavor comes at additional cost.
According to my studies, people with RA should be taking 3000 mg
Omega-3 fatty acids (EPA plus DHA per day). To reach this amount, you
would need to take 2.5 measuring teaspoons of Carlson Cod Live Oil or
1.7 measuring teaspoons of Carlson Fish Oil. A measuring teaspoon is
larger than a real teaspoon and holds 4.93 mL, or approximately 5 mL,
of liquid.
A measuring teaspoon is the approximate equivalent of five 1000 mg
softgel fish oil capsules. To determine the number of softgel
capsules per day needed to take to reach 3000 mg of Omega-3 fatty
acids, divide 3000 mg by the mg of Omega-3 fatty acids per capsule.
For example. Carlson's Super 1000 Cod Live Oil capsules contain 240
mg of Omega-3 fatty acids. You would need to take 3000 / 240 = 12.5
such capsules per day.
Sincerely, Harald

I JUST FOUND OUT I HAVE LUPUS FINNALY I HAVE A NAME FOR WHAT I HAVE. EVERYONE
THOUGHT I WAS CRAZY FOR BEING SICK ALL THE TIME. I HAVE ALREADY HAD HEART
SURGERY AND HAD A STENT PUT IN. AND NOW I HAVE NO INSURANCE AND DONT KNOW WHAT
TO DO?? I KNOW I CRY ALL THE TIME I JUST HURT. I HAVE NO KNEES TO SAY TO WALK
WITH JUST BARELY, AND MY HEAD HURTS ALL THE TIME. I USE TO WORK AND FELL AT
WORK AND FELL OUTSIDE OF WORK AND ON OCT OF 2004 I HIT THE CONCRET WITH MY
FORHEAD. I LOST CONNSIONSS. ANYHOW I HAD A CRACKED NECK AND CONCUSION AND THEN
ON TOP OF THAT THEY TOLD ME I HAD LUPUS THEN. BUT ONE DR SAY IT WAS SOMETHING
ELSE. MS AND LUPUS SO I HAVE BEEN TRYING FOR DISABILITY FOR 2 YEARS NOW AND
GETTING CLOSE FOR MY HEARING, I CANT GET A MEDICAL CARD I HAVE NO KIDS AND MY
HUSBAND IS DISABLED ALSO, K
Robin Westover <rw_creations@...
off my chest. I worked Monday and Tuesday
of last week. Wed. Thurs I spent in bed. Friday I went to the
doctor because I felt awfull and my ear was leaking guck. he told me
I had ear infection and gave my antibiotics. Also a new drug for the
RA
Saturday when I woke up my face was swollen and my eye lid swollen
shut. I thought it was infected, and there was a marble size lump
in front of my ear. sunday there were more marbles in front of my
ear, my eye lid was swollen shut and there were blisters on my
forhead. My hair line hurt like crazy. Ice didn't help, wet heat
did get my eye lid down a bit. So Monday morning back to the
Doctor.
I have Shingles, on my face. I've never heard of it on the face.
Today my whole forhead is swollen and blisters across it.
I got upset this morning with the phone company and started crying
and then my whole body started hurting and has hurt all day long. I
took a hot shower and have had the heating pad on me. Then went to
make dinner and burned my finger and flipped potatoes all over. The
chicken wasn't done, I tried to cook it in a crock pot but hadn't
given it enough time so I had to fry it and cook the potatoes in the
oven. After I burned my fingers I just cried and cried. I couldn't
stop. Finnally my dear husband barrowed an ativan from his mother
and I calmed down but my body still hurts. my wrists, elbows, knees.
upper arms and upperr legs. I can't sleep even with the Ativan.
I couldn't sleep last night because the muscles in my legs hurt and
my knees hurt.
I'm frustrated. I go to the rhuemy next wednesday but how to I
survive untill then?
any advice?????
People try not to get Shingles. everyone ought to have the chicken
pox shoot even if they have had the chicken pox because that is what
causes shingles. The chicken pox virus that stays in your body.
sorry for carrying on, it has just been one of those weeks. and I
haven't been able to work since last tuesday. That doesn't help
finances any.
Robin
kathy Bedilion

Hi,
Can you please post a link to Xiangyang Zhang's topic. I can't seem to
find it and I'd love to read the whole thing.
Thank you

sherry -42- have had p since i was 15-pa diagnosed 4 years ago...although i
had it at least 2 years prior....oh..well maybe 8 years prior since i had the
neck pain forever.............anyway...also have "bursitis" but starting to
wonder if it is fibro.........on methotrexate again and etodolac..and
predisone........damaged finger.....toe....hips and lower back hurt a lot
lately..........but ankles were really bad for a bit..............

Dear Janet, You are right. I deal with IBS on and off, but considered it
from my fibromyalgia. But that's another one that all of us share as well
and the list goes on.... Love, Fran

--
Hi Cathy,
An old antihistamine called atarax helps me to sleep. It has a
generic and isn't too expensive. I use it when the small dose of
doxepin and klonopin I am on don't work. Also...does neurontin help
other symptoms for you? If not maybe you could try switching to
klonopin if your doc thinks it is a good idea.
Good luck.Lack of sleep is awful.It makes everything else worse.
Marti

Cheri-
I agree with you on the pedicure. If I had a choice of manicure or pedicure
it would absolutely be feet down in the whirlpool for the pedicure.
Nothings feels better. the manicurist is a friend of mine, so it is a little
more
embarassing when I go for a long time and they look bad. She always teases me
about letting her feel like she has acomplished something! She also does a
"quick-mani-pedi" and you soak your feet in a tub of warm soapy water with
marbles on the bottom. While she does your nails she will remind you to move
your feet - it feels GREAT. I actually combed the stores to find glass marbles
to do this at home. I actually do it without the water and just stick my
feet in a tub of marbles. Great on a hot day or when my feet are exceptionally
hot (put the marbles in the refrigerator)- just slowly move your feet back
and forth in the tub. Breathe slowly ....stretch if you can - kinda a
yoga-spa experience.
let me know if you try it
Gentle hugs & prayers,
Carol M. in CA

I think someone explained how to set up the digest but I didn't save that
email. Would someone be willing to explain again, how to change over to the
digest from the emails? Thanks
Alane

From the FAQ on www.rheumatic.org
6. EXPLAIN THE JARISCH HERXHEIMER REACTION.
This drug-induced flare reaction may occur within hours, the next day or
within the first weeks after the patient starts the antibiotics - or any
time there is a change in antibiotic or dosage. It is caused by a die-off of
organisms, which in turn create toxins that circulate in the body. This will
often cause a temporary worsening of symptoms. Patients may experience a
range of symptoms from mild fatigue and sleepiness to flu-like symptoms -
chills, low grade fever, night sweats, muscle aches, aching and swollen
joints, nausea, hives, skin rashes, depression and short term memory loss.
Hives and rash are sometimes mistaken for an allergic reaction.
If the Herxheimer reaction is severe, the medication may be stopped and a
small dose of prednisone (no more than 10 mg.) may be prescribed. When the
flare subsides, the medication is re-introduced at a slow rate.
When this Herxheimer reaction occurs, it is a good indicator that the
antibiotic is reaching its target - a very positive sign. The length of time
for this reaction varies from patient to patient. About twenty percent of
patients do not experience the Herxheimer reaction. Scleroderma patients
seem to experience the Herxheimer reaction less often than RA patients.
Oxidative therapy may be useful in reducing these symptoms. Garth Nicholson,
M.D., director of The Institute for Molecular Medicine in Huntington Beach,
California recommends peroxide baths (four 16 oz. bottles of 3% hydrogen
peroxide in 20 inch bath or Jacuzzi, with 2 cups of Epsom salt. Patients
soak in hot water plus the Epsom salt for five minutes until pores are open,
then add the peroxide solution. This should be repeated three times a week
at bedtime. No vitamins should be taken 8 hours before bath. The peroxide
can also be directly applied to the skin after a hot shower/tub. The
peroxide should be left on for 5 minutes and then washed off.
Another useful suggestion from Dr. Nicholson - blend one whole lemon, then
add 1 cup fruit juice or water and 1 tablespoon of olive oil. Strain and
drink liquid.
Far-infrared saunas have also been found helpful in removing toxins from the
body. Instructions for building an inexpensive far-infrared sauna can be
found at www.mercola.com or www.drlwilson.com.
It is very important to drink adequate amounts of water to flush the toxins
from the body - no less than two quarts a day. Water not only flushes the
toxins out of the system, but lubricates the joints and carries nutrients to
the cells. You also need to make sure you have two to three good size bowel
movements daily. Should constipation be a problem, try taking a rounded
teaspoon of pysillium (Metamucil or a generic) in 8 ounces of water, one to
three times daily. Drinking warm prune juice on first arising in the morning
is also helpful. If necessary, you may also add powdered vitamin C (to
tolerance) to the prune juice.
Note: Scleroderma patients may have intestinal problems that involve lack of
motility in the colon. If they need a fiber supplement for stool
irregularities, they might do better with a product like Citrucel
(methylcellulose). They should avoid products with the active ingredient
pysillium.

I forgot to mention that O24 is a spray that you rub into the affected
painful area, not a pill.
Linda