Rheumatic

Hi Kathy, Forget the Humira. Get rid of the toxic cocktails! Why aren't you on
Minocin or talking about Antibiotic Protocol and finding out about the
Infectious Theory. It's all in the books by Henry Scammell and Dr. Thomas
MacPherson Brown. The titles are: "The New Arthritis Breakthrough", by Henry
Scammell, "Scleroderma, The Proven Therapy That Can Save Your Life." by Henry
Scammell and"The Road Back", co-written by both Scammell and Dr. Brown. Those
toxic drugs suppress the immune system. What you want to do is enhance the
immune system so that it will start working on it's own again. I hate these
docs who give you a temporary feel good medicine while the meds rob you of life.
Meth, Prednisone and all the rest are just Dr. Feelgood remedies while you die
inside. It's like putting a bandaid on a cancer. Wake up. and think! Get
healthy. These illnesses have an Infectious origin. Get rid of the infection
and boost the immune system. You got a lot of research
work to do. After 18 months of being on antibiotics, resting, eating right,
thinking positively and surrounding myself with a good support group at home and
on-line, I am in remission. I was given up for dead several years ago. This
year I spent the winter traipsing thru the Caribbean and last Saturday night, my
husband and I danced the night away at my friends birthday party and I am going
on 71 in August. It can be done. Look at Lance Armstrong who was ion his
deathbed from cancer and got up to win all those trophies. Got married, had
children, is on T.V all the time and became not only a celebrity but a
millionaire. Good luck kid, ~~~~Dolores
Kathy <sunbriar@...
methotrexate (yeah) but now he wants me to try Humira. Anyone have any comments
about this med before I go get it? He said my bloodwork was showing some kidney
issues and that I may have had an issue before he even started the methotrexate
and I should stay away from celebrex, ibuprofren and aspririns for ever... I
felt no better on methotrexate and maybe even worse (not sure cause I have other
issues to deal with) but my hands still hurt and other parts too, only the pain
pills seems to help. So he says to start the humira and see if that helps. he
said if it doesnt we can just go with the pain pills alone. I also see my endo
next week, and Ill tell him all this too, cause Im not sure how my hormones are
affecting all this arthritis. kathy

Dear Fran, I'm so sorry about your hip. Oh geez, you must be reeling. And you
are handling with so much grace, it is amazing. I hope you get the relief you
need soon and your holidays are as lovely as they can be.
lots of love,
Beth
Fran Mishler <fran@...
Dear Kathy and everyone,
After reading your email, I agree with you completely that we all want a
doctor who is up on the latest medications, and one who is willing to
discuss the side effects with us and one who is willing to monitor our side
effects if they do happen to occur. Unfortunately from my experiences it's
tough to get all of that from your doctor these days. I know we are never
supposed to "settle" for a doctor and believe me I've seen over 7
rheumatologists in my life. I'm currently with a doctor who is an associate
professor at a teaching hospital at one of the major universities in my
state. I thought maybe he would be up on everything and smart enough to
figure out which drugs would suit me best. So far he's just been ok. I
like him personally, and he is very intelligent, but he tends to not discuss
side effects unless they are the big ones, like infection from Enbrel. He
bases his decisions on the percentages, and my body doesn't always tend to
go with the flow.lol.
I also have to admit that I'm not the typical subject when it comes to side
effects from these drugs. So far I've been allergic to MTX, Enbrel, and
Humira. The Sulfa drugs made me sick at my stomach and Plaquinel didn't do
much of anything. Since I've been on Arava I've had increased energy and my
pain has even gone down a bit. I didn't think I had any real side effects
from Arava except it seemed to bother my sleeping. After Enbrel caused
possibly heart problems and Humira almost put me in the hospital, with
chronic lung infections several times, I felt like this was no big deal.
Now there is a chance I could be wrong. Last Monday my hip started hurting
and hasn't stopped. It came on really quickly and is more painful than it's
ever been in the 20 years I've had bursitis on and off. I saw my pain
doctors two days ago and they think it's possible I have AVN, avascular
necrosis basically where the top of the femur bone just starts to decay.
They sent me for a CAT scan, which I had done yesterday. I won't know the
results until the 28th. If there is no sign of AVN, they are willing to
give me another injection in my joint to stop the bursitis, but if it is
AVN, I have to go see a surgeon. What's strange is they think I can't have
surgery based on my predinsone usage, but I know people have had surgery on
more than I am on now.
To say I'm frustrated is a major understatement. This can be caused from
predinsone as well as Arava, but based on my past experience I'm betting on
the Arava. Though I'll have to stop the predinsone as well if the test is
positive. No one of course told me of this side effect with Arava, but even
if they had I'm sure I would have gone ahead and tried it anyway. That's
how desperate I was to feel better, and still am. The way I see it, it all
comes down to individual choices. We all make them everyday and they always
affect our daily life and our future. We do have to remember that with
these choices we have consequences and these are very powerful drugs that
they don't know a lot about yet. Let's face it, if you take a new drug, do
well and have no side effects, you are on cloud nine and wish and hope they
worked this well for everyone. You want to sing to the world that Enbrel or
Humira has given you back your life. If you have a serious side effect, you
want to warn the world of the problems they could face just trying to get
better.
I'm not saying either side is right. All I know is I want as much
information as I can get before I make these big decisions. Having a doctor
on your side during this is critical. (My rheumatologist is out of town
right now, but my pain doctors are available. I also have the wealth of
knowledge of this group and the internet to look up the answers I seek) I
wish we all had a crystal ball that would let us know which drug would help
us or at the very least just not hurt us worse than we already are. So far
though I haven't found one that works.lol.
I think the main thing to do is to keep trying every day to get better. You
can't give up, though for a while there I was really ready too this time.
Mainly, it's the thought of surgery, the constant pain that has been
incredible this time, and the loss of being able to walk. My husband bought
me a walker and I can get around somewhat with that, but I have to go
slowly. I feel more like 89 than 49 every day. It's so very hard to go
backwards when you finally make some progress after 5 years of misery. I
just hope with all your help and what ever inter strength I can find, I can
face the future with grace and dignity.
Be thankful for all you do have and enjoy all the moments this holiday gives
you with your loved ones. I think the real blessing of this disease, if
there is one, is it opens our eyes to what is truly important in our
lives.friendship, loved ones, moments of happiness, and the little joys that
come with every day life. We look for these now since we've had to put so
much of our future dreams on hold. I hope you all have a wonderful
Christmas, and Holiday. I hope you find pleasure in the little things and
keep on searching for ways to fight this horrible disease. Love to
everyone. Fran

My PCP (a D.O.) just switched me to Mobic -- 15 mg, 1xday -- last
week. (Was on Vioxx for about a year, and have been on Celebrex for
almost 2 now, I think.)
And heck, wouldn't you know that I'd JUST bought a giant bottle of
Aleve at Costco when the news broke ... I'm still taking it, though.
I can remember a few years back when I WAS taking Vioxx reading
studies about the increased risk of stroke and/or heart attack,
especially amongst those taking higher dosages. Why all the sudden
brouhaha, I've wondered?? They've known about this for years! I
don't know ... seems to me the litigious nature of our society has
brought this sort of thing on ... and it's a shame that drugs that
genuinely improve the quality of some peoples' lives will now be
unavailable to them, simply out of fear of lawsuits ... it's a shame
that freedom of choice (that is, an individual choosing what is or is
not an "acceptable risk" for them) is being taken from us, too.
Will be interesting to see what the rheumatologist will recommend at
my upcoming appt. in February. Am thinking by that time they'll be
saying Mobic is a no-no!
Hope you all had a lovely holiday!
Warmly,
Cat

I agree with the comment that "all drugs have side effects." The problem
is in figuring out what the side effects are. Especially difficult since
the information is generally coming from the manufacturer or people in drug
development. (There was an excellent article in AARP on this topic, but I
can't locate it.)
I was on Vioxx for a number of years, but went off because I had infections
of the urinary tract, bladder and lungs. Vioxx seemed to be implicated,
but you had to search hard to find such info in the literature. I suspect
that some of these other side effects may be a reason for pulling Vioxx. I
know that these side effects are unusual, but it seems that many of the
people at this site have unusual effects. The md's are dependent upon the
information which they get from the drug companies.
I live in Canada which has a universal medical plan. I see whatever md I
wish. I currently am seeing a rheumatologist, a dermatologist, an ent, a
gastro-enterologist, as well as my GP. My last tube of Dovenex (120 gr
tube) cost me 9$ CA while I see it listed on the web for US purchase for
over 200$ US. I've had 2 GI bleeds in the past year and went to the
emergency room where I received excellent care. I do live in a major city
which is always helpful in getting good health care anywhere. Our national
health plan has it's problems, but it remains #1 on all polls for support
by the citizens. I pay more taxes than I did when I lived in the US, but I
feel that it's worth it to provide universal health care to everyone.
I find there's a lot of mis-information in the US regarding medical
programs in other countries. It would be useful if people could get
unbiased information about programs in other countries, as well as about
medications.
Jim
--
No virus found in this outgoing message.
Checked by AVG Anti-Virus.
Version: 7.0.298 / Virus Database: 265.6.5 - Release Date: 12/26/2004

prolotherapy - has anyone tried this? here is a web site explaining about it.
www.getprolo.com I've been getting trigger shots in my back and shoulder to
neck area they help alot. also there is a herb that helps - the name of it is
pregnenolone has anyone else tried it?
Jan from AL

Hi Carol
My MRI of the knee showed fluid in and around the tendons which they said was
indicative of inflammatory disease.
Hope you get some good answers.
Barb

"...84 percent of the ticks exhibiting infection with a single
Mycoplasma pathogen. Co-infection rates were also very significant,
at 27 percent, and 3 percent of the ticks were infected with all
three Mycoplasma
pathogens. ..."
..."We now have evidence of the presence of human pathogenic
Mycoplasma species in deer ticks." ...
"...more doctors should consider testing suspected Lyme disease
patients who are not responding well to treatment for Mycoplasma." ...
* * * * * * * * * * * * * * * * * * * * * * * * * * *
MYCOPLASMA REGISTRY REPORTS
for gulf war syndrome & chronic fatigue syndrome
© 2007 Sean Dudley & Leslee Dudley. All rights reserved.

Hi group,
I went to my GP on the 23rd.. He had the result of my MRI. He said it showed
fluid on my knee . Have any of you had Pa to start likr this ? I see a rhemy on
the 12th. I'm real nervous .. I haven't done anything about my P or Pa in
years..the last time it flared my P soo bad it was awful! but I hurt really bad
these days .
Not just joints but muscles too? It is bad. My GP is doing a bunch of blood
test
What should stand out pointing to Pa?
I know it sounds silly but I would like to know what to look for..
Thanks,
Carol

In my short time in this group I have learned so much and remain
humble by what I so often think are my own troubles with this
diease. So very many of you have symptoms and degrees of disability
much more so than I do. Sharing the struggles and trimuphs with you
has made me a better person. It is when you look outside of
yourself that you are able to absorb the growth that is the seed of
life. It is with this that I say, "Thank You". God bless all of
you. I look forward to the coming new year and the continued
sharing from all. With Love, Carolyn

Hi Fran,
Your post about choices was so very true. We do have many choices in
our live, the emdications we take and more. It is difficult when we
don't know the side effects of the drugs, especially if our doctors
haven't mentioned them to us. My general physician was the one tha
ttold me about stopping mtx while taking anti-biotics. You would
have thought my rhumi would have told me. Not to mention, with Vioxx
and Celbrex coming off the market, I bet all those anti-inflamatory
drugs will be taken off the market at some point. I just pray that
the Diclofenac that I am taking now will continue to work for me, and
doesn't cause any problems. I hope that the Vioxx didn't do any
damage to me as I was on it for over two years.
Well, as always I love reading your posts. It's been a while since
I've posted. I'm home for the holidays, so haven't been checking
group mail much. Takie care, and again its always good to hear from
you.
Love and hugs,
Carla

For this holiday, I received the Black and Decker Lids Off. I have such pain
when I try to open jars and such. It is really a nice device. It is very
simple to use and no pain!
Sarah D in MN

In the last two years I have been able to make great progress with
my PA. Lately I have been having a lot of pain in my lower back. I
lift weights, but I also notice it when I bend over. Yesterday I cut
wood and it basically was unbearable. Unfortunately i ahve to sit a
lot at work. Does anyone have similar problems in their back or is
it more structural?
Scott

Denise, I just checked your doggie cookie site.
Are you still at Fort Leonard Wood? I travel from St. Louis to SW Mo on a
regular basis, and so am through St. Robert every few weeks.
Since your email address is Bell South, I assumed you were in the South. ;)
--
Jean

Allison, that' is such great news that it went so well for you. Won't
it be nice if we can cut down on painkillers. You made me feel
reassured that things will be ok. I know everyone is different, but
at least I am hearing positive things about the treatment. Thank you
for sharing all this with us.
Have a wonderful holiday!
Gentle hugs
Pat

Hello group,
I am writting you from Iowa, as I am visiting my Grandma and other
family and friends. I have already been home a week and am enjoying
some time away from home. It was a hassel getting here. I flew from
Lincoln, Nebraska to Moline, Illinois, which is not too far from the
town where my Grandma lives. I was to leave Lincoln on a 6:45am
flight last Thursday morning. I managed to get there early, however
their was a long check in line. When I got to the counter, of course
their were computer problems, and I had 9 minutes to make it through
security. Yeah right! With Jacques, my Seeing Eye dog, we always
get wanded and patted down cause of his collar, leash and harness
having metal on them. So, I had a strong feeling we were not going
to make it. And, sure enough as I just put my shoes on from beign
searched, they told me I'd missed my flight. So, I called my grandma
and told her taht I got a flight for later on that afternoon. I
decided to sit there at the airport for the next five hours as I
didn't want to bother my friend who had woken up early to bring me to
the airport. I did get breakfast paid by Northwest Airlines. I
wasn't going to complain. I finally arrived here about 6:30pm last
thrusday evening. Boy was Jacques and I exhausted. We didn't sleep
the night before as I had so much to do, and just didn't want to
sleep cause I knew I'd not get up in time. Good thing I could doze a
little here and there at the airport.
On Saturday, we went to Illinois to visit my family for our family
Christmas. That was neat to see everyone and catch up on all that
has happened over the last year. I've also managed to spend time
with my best friend of 13 years, and her boyfriend. Taht was
aawesome. Besides just taking it easy here at my Grandma's place,
it's been an enjoyable trip.
Not a lot of flares with the pa, but I can tell that I am not
sleeping on my nice comfy bed...and at nightime I get more tired and
soar even if I have not done a whole lot. I I guess at home I have a
lot of accessable stuff, like my bed, specific computer chair to sit
in, and things like that. Her place is all one level, so that is
great, but I still miss the comforts of home. It's hard to remember
that my family doesn't always understand the way this condition ameks
a person fell. I have slept a lot here, and fo course Grandma
doesn't understand that the pain soemtimes wears me out, etc. I'm
trying to deal with it. I jsut remember that she doesn't have the
condition and may not realize it etc.
Well, enough of my ramble. I know this is more of a personal post,
but I just wanted to let you all know how things were going. The
support cane is also working great! I know it has beena while since
I posted about that too. Oh, and Jacques was scared of the airplane
so that will be a pleaseant trip home for him. I think his ears have
been bothering him with ear infection, so I hope he can do ok on the
flight. Poor guy, eh shakes and pants, and whimpers a bit.
Anyways, hope you all have a Merry Christmas and a Happy New Year!
Love,
Carla and Jacques

Dear Kathy and everyone,
After reading your email, I agree with you completely that we all want a
doctor who is up on the latest medications, and one who is willing to
discuss the side effects with us and one who is willing to monitor our side
effects if they do happen to occur. Unfortunately from my experiences it's
tough to get all of that from your doctor these days. I know we are never
supposed to "settle" for a doctor and believe me I've seen over 7
rheumatologists in my life. I'm currently with a doctor who is an associate
professor at a teaching hospital at one of the major universities in my
state. I thought maybe he would be up on everything and smart enough to
figure out which drugs would suit me best. So far he's just been ok. I
like him personally, and he is very intelligent, but he tends to not discuss
side effects unless they are the big ones, like infection from Enbrel. He
bases his decisions on the percentages, and my body doesn't always tend to
go with the flow.lol.
I also have to admit that I'm not the typical subject when it comes to side
effects from these drugs. So far I've been allergic to MTX, Enbrel, and
Humira. The Sulfa drugs made me sick at my stomach and Plaquinel didn't do
much of anything. Since I've been on Arava I've had increased energy and my
pain has even gone down a bit. I didn't think I had any real side effects
from Arava except it seemed to bother my sleeping. After Enbrel caused
possibly heart problems and Humira almost put me in the hospital, with
chronic lung infections several times, I felt like this was no big deal.
Now there is a chance I could be wrong. Last Monday my hip started hurting
and hasn't stopped. It came on really quickly and is more painful than it's
ever been in the 20 years I've had bursitis on and off. I saw my pain
doctors two days ago and they think it's possible I have AVN, avascular
necrosis basically where the top of the femur bone just starts to decay.
They sent me for a CAT scan, which I had done yesterday. I won't know the
results until the 28th. If there is no sign of AVN, they are willing to
give me another injection in my joint to stop the bursitis, but if it is
AVN, I have to go see a surgeon. What's strange is they think I can't have
surgery based on my predinsone usage, but I know people have had surgery on
more than I am on now.
To say I'm frustrated is a major understatement. This can be caused from
predinsone as well as Arava, but based on my past experience I'm betting on
the Arava. Though I'll have to stop the predinsone as well if the test is
positive. No one of course told me of this side effect with Arava, but even
if they had I'm sure I would have gone ahead and tried it anyway. That's
how desperate I was to feel better, and still am. The way I see it, it all
comes down to individual choices. We all make them everyday and they always
affect our daily life and our future. We do have to remember that with
these choices we have consequences and these are very powerful drugs that
they don't know a lot about yet. Let's face it, if you take a new drug, do
well and have no side effects, you are on cloud nine and wish and hope they
worked this well for everyone. You want to sing to the world that Enbrel or
Humira has given you back your life. If you have a serious side effect, you
want to warn the world of the problems they could face just trying to get
better.
I'm not saying either side is right. All I know is I want as much
information as I can get before I make these big decisions. Having a doctor
on your side during this is critical. (My rheumatologist is out of town
right now, but my pain doctors are available. I also have the wealth of
knowledge of this group and the internet to look up the answers I seek) I
wish we all had a crystal ball that would let us know which drug would help
us or at the very least just not hurt us worse than we already are. So far
though I haven't found one that works.lol.
I think the main thing to do is to keep trying every day to get better. You
can't give up, though for a while there I was really ready too this time.
Mainly, it's the thought of surgery, the constant pain that has been
incredible this time, and the loss of being able to walk. My husband bought
me a walker and I can get around somewhat with that, but I have to go
slowly. I feel more like 89 than 49 every day. It's so very hard to go
backwards when you finally make some progress after 5 years of misery. I
just hope with all your help and what ever inter strength I can find, I can
face the future with grace and dignity.
Be thankful for all you do have and enjoy all the moments this holiday gives
you with your loved ones. I think the real blessing of this disease, if
there is one, is it opens our eyes to what is truly important in our
lives.friendship, loved ones, moments of happiness, and the little joys that
come with every day life. We look for these now since we've had to put so
much of our future dreams on hold. I hope you all have a wonderful
Christmas, and Holiday. I hope you find pleasure in the little things and
keep on searching for ways to fight this horrible disease. Love to
everyone. Fran
*
I agree with you, Ronnie. Although Enbrel has not been around as long as
MTX, ALL drugs carry risks including MTX. I personally want a rheumy who
wants
to help me fight this disease with the best available armor while
recognizing the need to monitor me constantly to ensure that side effects,
if any, are
identified early. It is up to us to be alert to changes going on inside us
and to tell our doctors EVERYTHING and to discuss the results of our
frequent
blood work with our doctors. If we don't want to use the best available
medications, we may as well revert to using leeches since they've been
around a
long while, too. Some doctors are so afraid to try new things that their
patients end up suffering needlessly. I am not saying that is the case
here, but
perhaps it is best to have a doctor who presents the patient with options
and information so that together you can decide on the best course of
treatment
while being cognizant of the risks.
Kathy F.
In a message dated 12/22/2004 12:53:26 P.M. Eastern Standard Time,
ronevans@... writes:
Why does your doctor not have confidence in Enbrel? It was a miracle for
me
where inject able MTX was torture. You may want to get a second opinion
and
give Enbrel or another biologic a try for a few months. You can always
stop. It may surprise you.

I'm in my recliner. I got up to get some water and suddenly I
Hi Fran,
Are you sure it's not the fibro?
It sounds a lot like an episode I went through a few years ago.
It was caused by a 'nodules'in the hip itself.
A physiotherapist eventually 'worried' the nodules into submission.
Suzie.

Hi Jane,
Have a great holiday. And thanks for all of your contributions. I'm
on vacation and just checking in occasionally.
Look forward to seeing you back in the new year :)
Marti

Hi Jane and everyone else,
Sorry that I've not been posting so often recently. A bit busy between this
and that. It looks as if we all are right enough as there has not been so many
posts to read in recent days( You will be happy about that eh Kathy? Gives
your fingers a bit of a rest)
I just wanted to second Jane's good wishes to everyone.
Hope you all enjoy the holiday season. Go easy on the turkey or whatever
other goodies you have over the next week or two.
I also hope that this time next year we are all talking about the pain we
USED to have.
All the best,
Martin.

Thanks for asking, Pat!
My first Remicade appointment went VERY well, and this
morning I'm feeling postive results -- despite the
sub-freezing temperatures and the sub-zero windchill
here these past few days.
I was nervous and exhausted from my MTX the night
before. I was also convinced that I had a sinus
infection and a gallbladder flare. The nurse and the
doc looked me over and assured me that my temperature,
blood pressure, TB test, and chest xray were fine. I
settled into the recliner with a stack of magazines --
and it was smooth sailing. It took three tries for the
IV nurse to find a good vein (my fault, not hers) and
then all systems were go!
Seriously, finding the vein was the hardest part. I
felt no other pain or discomfort. They gave me a
blanket when I got cold, checked my blood pressure and
temp every half hour, answered all my questions. Two
hours later, the treatment was done, and they turned
me loose. I go back in 2 weeks for a second dose
(which may have a risk of allergic reaction), then 4
weeks after that for a third dose. Then they'll put me
on an 8-week schedule. They also warned me to see a
doc immediately at the first sign of infection.
I swear, I think I felt results almost immediately.
Leaving the doc's office, I was less stiff than I
should have been after sitting for three hours. My
feet hurt less than they did earlier in the day. And I
was able to turn my head to the left without turning
my entire upper body. (You know, the movement you make
when you check behind you before backing out of a
parking space.)
I went straight home. Although my co-worker had warned
me that I would be terribly fatigued and want to sleep
through the evening, I felt no more tired than usual.
My sweetie and I nuked some leftovers and watched a
movie on TV. I went to bed at my usual time.
This morning, I woke up on schedule, but with less
brainfog and stiffness, and I got down the stairs
without clinging to the rail for dear life. I am still
a little stiff, but not nearly as bad as it has been.
It's still early, and I haven't been out in the
weather yet.
Some notes from the doc:
-- He's had good results with Remicade with his RA
patients, and with the 10 other PA patients he's
treated. He mentioned the recent approval and good
results of Remicade use for Anklosing Spondylitis, and
reminded me that AS is a close cousin of PA. He said
the Remicade should help reduce that deep, all-over,
achy, "roving tendonitis" type pain I've been feeling.
-- On MTX dosage. I must continue MTX for best
results, but I can reduce to 16mg with my next dose.
(I felt better on 16mg than I do on 20mg).
-- On Mobic dosage. He said the Mobic is to make me
feel better. After we're fully loaded on the Remicade
(early February), I can start skipping doses of
painkiller. I hope the same holds true for the muscle
relaxant.
That's it folks. So far, I'm a happy camper. I'll keep
you posted on how long this initial goodness lasts,
and what kind of rebound I get.
Happy Holidays!
-- Allison
=====

Rosalind, I am speechless to read your e-mail asking people to shorten their
e-mails just because you haven't enough space. I, for one enjoy the details,
especially the ones that explain why something is happening and what we all can
learn from it. These e-mails are never taken to be personal. This is a group
site and we have many issues to discuss and a lot to learn. If you haven't
enough space, then do what the rest of us do, get more. You also have a delete
button, use it. I detect you have a control issue and you want to control
people's e-mails. You should try to control yourself first or remove yourself
from the list. Last I heard this is a free country and you don't have to read
the book. An offended avid reader. Dolores
Rosalind Gittings <rosalig@...
I just wanted to ask if people could please delete all but the most
relevant parts of the email they're replying to. I have limited
mailbox space and often cannot receive large emails, or they prevent
other emails coming through. I know I can go to the website to read,
but because of time limitations I prefer to read all the emails at
once from my mailbox.
Thanks and blessings,
Ros

I am in San Diego and speak frequently to people in drug development for
companies such as Pfizer. I spoke to several scientists at a cocktail party
last weekend about Viox, Celebrex, etc. Basically they say you can't get
something for nothing. All drugs have side effects. These new drugs are
being held to a higher standard and are being tested to a much greater
degree than older drugs. If aspirin was developed today it would never be
approved because of health risks and side effects. Tylenol probably
wouldn't either because of toxicity. Neither have ever been evaluated for
increases heart or cancer risk or much of anything else. What it comes down
to is that you have to weigh the benefit versus the risk. If your coronary
risk doubles from 3 per thousand to 6 per thousand does it warrant not using
the drug if it dramatically improves your quality of life? Furthermore, it
seems that the majority of cases are at the maximum therapeutic dose in
elderly people with a history of heart related illness. It seems a lot of
this is the media trying to make headlines and attorneys trying to make
money. I was on both Celebrex and Viox and they already have solicited me.
What may happen is the crippling of the pharmaceutical industry. The USA
does drug development for the entire world. There is no drug company
conspiracy. What may happen long term is that we will be reduced to the
level of more socialized countries where they tell you to take aspirin and
go home and suffer if you have arthritis. Personally, give me my Enbrel,
Viox, and Celebrex. I'm not at all sure I could have lived without them
when I was at my worst. And by the way, check out the risks you take for
all sorts of things like stroke, etc while on MTX or any of the older
treatments.

Hi Allison,
I was just wondering how your remicade appt went yesterday. I was
thinking about you all day. Please let us know when you have some
time. I know it is getting busier each day as we get closer to the
holidays. Just wanted to let you know I was thinking of you.
gentle hugs
Pat

Hi Janet! Geoff here.
You wrote:
"I have been on Arava and it has turned up useless at best. My Rummy wants me to
try emberl. Dr Mercola informed me that since my remission has stopped in 2000
the protocol willnot take hold again so I had to go to trex,plaquinel and been
on Arava for 5 years and it has now quit. Does anyone know what anti-inflam meds
I could add to Arava. My Dr says there are none other than big stuff. And I
informed her NO thanks."
Thank you for the kind comment. It sounds like you're in the pits. Maybe
Mercola's right, then again, maybe he's not. Dr's are great guessers -- but
that's all it is -- a guess. And when it comes to what you feel in your own
body, you are by far more accurate than any machine, test, or guesser -- degreed
or not. If you fell poorly, something is wrong. The place the guessers have
you is when you feel great and there's trouble afoot. Obviously this is not the
case for you.
Try taking up the old standby route:
Ease tension and reduce stress. If you have one of those bio-feedback toys
from RadioShack or some such place -- use it. Reducing the stress reaction has
huge benefits. Do you read the papers and watch the news? Why? Have you not
noticed newsprint sells on bad news -- as do radio and TV. Truly, other than
knowing we need to pray and contribute as laid on our hearts for those lost and
suffering, what tangible gains is there in knowing the lurid details of a murder
2,000 miles away? "Journalism" thrives on presenting us with pictures in film
and word of the weeds in yards far away -- but what of those in our own yards?
Check your diet at the door. Have you become complacent? Try a 2-day fast
with electrolyte water. Make sure you're on the 1 meal in-1 meal out bowel
plane by drinking plenty of clean water. What about meats, grains, fruits and
processed sugars? Those sugars are killer, remember?
Supplements? Vitamin C is still a Godsend.
Do you sleep? Sleep studies revealed humans sleep in 3-hour cycles and if
left to their own devices will develop a standard 9-hr sleep routine which
yields significant health benefits from stress reduction to healing. The 8-hr
sleep session was an invention of industrialization. Shoot for 9, good,
comfortable hours, in total darkness.
How are your kidneys and liver? Filtration maintenance is critical for
good health and energy. You may want to check on some flushes and tonics.
Exercise anyone? Even 10 minutes of daily stretching helps.
Friends? If you can't go out with them, ask them over to visit and be sure
to stay the course of catching up on mutual interests, the outside world, loved
ones, etc. The pity party is a usually useless, and drives friends away like a
broom after mice.
Don't forget the Epsom salt baths and various other rec's on the rheumatic
site.
HTH,
Geoff
Acts 2:39

Tonight I posted a short piece on my blog about the issue of prayer and
healing as it relates to my own battle with Psoriatic Arthritis. I thought
some folks on this list might be interested in it. You can access it here:
http://chuckcurrie.blogs.com/chuck_currie/2004/12/does_prayer_hel.html
****
Chuck Currie
233 Spring Avenue
Webster Groves, MO 63119
314-963-0496
<http://www.chuckandliz.com
www.chuckcurrie.blogs.com

dear carolyn,
thank you so much for the time and trouble you took to give us such
useful information. although most of it is common sense, there are a
number of things i learned from your message (and i have always
thought of myself as quite knowledgeable on this subject).
everything you wrote bears consideration. your message was very
helpful.
thanks once again,
karen

Hi everyone, Sorry about the long text of my last posting. Of
course my intention is not to replace any education that you should
be receiving from your own physicians. Despite the length of my
addressing self injections, I actually only highlighted it. It's
not complicated. I now feel that I made it too lengthy, inserting
too many words of advice. A dear friend of mine is on Enbrel
injestions for advanced rheumatoid arthritis. I've been giving her
the injections for several years. When I read the instructions for
self administering I thought they were far too complicated. I was
very glad to see that a push on cap is now being provided to cover
the med vial so that you can retrieve the medicine with the syringe
with out using a needle. Previous to this you had to withdraw the
med using the one and only needle provided. In nursing we are
taught that once you stick that needle through the rubber that it
dulls the needle and you must change the needle. You can cause pain
with a dull needle. Glad they took care of that problem. One
correction from my last note. I had heard of psorisis during my
nursing career. What I had not heard of or dealt with was
psoriatice arthritis. Warmly, Carolyn

hi micky,
have you tried mobic (meloxecam)? i was on vioxx and obviously had
to stop in september. i don't find mobic quite as effective, but it
is certainly better than no NSAID and it is easy to take. just a
suggestion.
take care and merry merry christmas micky,
love, karen

In a message dated 12/22/2004 1:03:55 PM Eastern Standard Time,
mickysz@... writes:
Oh Heck! What do I do know?
Hi Micky,
I stopped taking cox 2 and started Naproxen. Last night on the television
they said that it is now proven that Naproxen in large doses cause heart
disease. They consider what I take large doses. What do we take???
Janet

Hi, Michelle:
In researching AS, Professor Ebringer found that the disease is caused by a
mechanism called 'molecular mimicry;' the same process that destroys heart
valves during certain infections with streptococcus.
Ebringer was head of the Middlesex AS Clinic for many years, and one of his
problems was to differentiate between early stages of AS and RA, and he had
supposed that a similar mechanism could explain RA and found in every case
elevated IgG (an immunoglobulin that can initiate the cascade of inflammation)
that was specific against the Proteus mirabilis germ. It was determined that
this germ resides in the upper urinary tract and is very difficult to eliminate
and it was supposed that even a chronic sub-clinical infection by this germ will
cause RA. FYI the nemesis in AS is the common bowel bacterium, Klebsiella
pneumoniae and corresponding increase in IgA-Kp. This is fact, and I have AS
and have proven that the anti-Kp diet works--but works MUCH faster when done
along with an antibiotic protocol. Tests in the past did not take into account
one of the major triggers of AS: Candidiasis. So some people got a little
better on antibiotics (but did not follow the proper
diet, so Kp developed resistive strains rapidly and recolonized), and of course
the people with candidiasis got worse using antibiotics.
In the case of RA, I do not have any feedback regarding diet (hundreds of
people with AS have eliminated symptoms using diet alone), but Ebringer gave a
couple of lectures here in the US and he mentioned something he called 'the Oslo
diet,' and suspected that this Proteus bacterium could be reduced in the tract
by taking enough certain fruit juices like cranberry as it is fructose and
another sugar (mannose, I think) that causes the germ to be expelled (they have
flagellae 'hooks' that don't like slippery surfaces). Some other dietary
measures have been discussed both here and on the Mercola site, but I think that
Cipro would be the best antibiotic to treat this type of infection with, but it
should be taken in high dosages and moderate cycles with anti-C. albicans
efforts alternating between. Ebringer did not like to recommend antibiotics
even for AS, but I had great results. His website:
http://www.kcl.ac.uk/kis/schools/life_sciences/life_sci/ebringerR.html
I think that he is working on a live internet chat on AS, and certainly people
with RA would be invited to join in. I would add MS, also, since he has some
results with this thanks to his work on Mad Cow (BSE) by now.
Please understand, I don't want to counsel against any of Dr. Brown's work,
especially since I have no reports of positive results, but this is something
that is worth knowing about and when I was so ill with AS (and I have seen RA
cases as bad and even worse), I would have experimented with anything to get
even a little better. I believe that we have layers of 'guests' in our bodies
and many might not be as beneficial as simple "gut flora" implies, and we have
picked up fungi, protistae, and stuff I will not even mention in addition to the
over 200 'enterobacteriaceae' and over 3000 viruses in our portable sewars. I
say EVICT them with considerable abandon and let Allah sort them out! Start
over with our friendly flora and immune system libraries--The boy in the bubble
did not need them to survive.
I think most UTIs are caused by E. coli, but about 15% could be due to P.
mirabilis, but as I write this I remember and think that where there is one
bacterium there can be others--it is the HOST as much as the guest that matters.
In AS, we make Kp unwelcome by eliminating starches, but I don't know any tricks
outside the big guns and fruit juices--for RA.
I wish the best and hope You experience relief soon,
John
smoosh215 <smoosh215@...
John,
You wrote to KElly about RA typically caused by post-uti infection.
Do you have any more info on that? I ask because when I was pregnant
with my twins I had one that wasn't easily cured due to antibiotics
and being pregnant. I must say that it took several rounds of
different antibiotics to get rid of it. About 1 year later during a
stressful time after the death of a dearly loved grandmother and sleep-
deprivation from the twins, I developed RA symptoms. Coincidence?
I'd love to hear what you know...
Michelle

To One and all
Have a great Christmas and new year as I'm off to see the outlaws in
Ireland! I will be spending Christmas there and will not have any access to
my beloved computer for 12 Days!!
Anyway I hope that we are all feeling better in the New Year, especially you
Fran as you seem to be having a tough time of late.
The one thing I want from Santa is a Cure for this horrible disease, but
failing that I'll settle for a cool black pint of Guinness!
Take care out there and don't let the buggers get you down....
Micky

To all my friends and compadres in the PA group, the Annies, Fran,
Kathy, Michelle, Micky, Marti & Martin, Orin, Linda, Sue and all the
rest whose names I can't recall due to the fog in my brain, I'm
sending my wishes for a wonderful, relaxing holiday season with your
friends and families. Thank you all for the atmosphere of caring and
support that we provide each other with here, it's truly priceless.
I'm going on holiday today and won't return until 1/3, and we'll be
installing a new computer at home, so I won't be checking messages
often if at all. Hope to "see" y'all in the new year!
warm blessings, jane

Suzy,
That is one of questions I am going to ask my Rheumy today when I
see him. My memory and concentration is getting worse as time goes
on to the point that even I notice it. If someone stops me in the
middle of a sentence, I forget what I was talking about. :-(
I am on both MTX and Enbrel and have been for a few years and it is
only in the last 6-8 months that I have been having this problem.
No other meds have been added.
This happened once before but I had started taking a med to help me
sleep. Some type of depression med that makes you drowsy.
I'll see what he has to say.
Dick

Janet Arava does the same thing Enbrel, Remicade, etc., do. It shuts down
your immune system essentially. Don't be fooled just because it's a tiny pill
compared to an injection or infusion. Remicade nearly killed me in more
ways than one. They're all very dangerous. I'd go for an aggressive version
of
the AP, just my 2 cents fwiw.
Jill
************************************** See what's free at http://www.aol.com.

Good morning
Just read this on the wire
All Doctors in the UK have been advised to stop prescribing the so called
Cox-2 drugs following revelations that they increase the risk of heart
attack. MHRA the UK licensing body wrote to all Doctors instructing them to
take all patients off of all Cox-2 Inhibitors.
Oh Heck! What do I do know?
Micky
Michael Szczygiel
Sales Co-ordinator
Davies Turner & Co Ltd
Dartford
Tel: 01322 283308
Fax: 01322 282156
Please note: All Business of whatsoever nature, be it as agents or principal,
with any party whatsoever, shall solely be conducted in accordance with BIFA
Standard Trading Conditions.
These conditions have clauses which may limit or exclude our liability and a
copy is available on request.

Why does your doctor not have confidence in Enbrel? It was a miracle for me
where inject able MTX was torture. You may want to get a second opinion and
give Enbrel or another biologic a try for a few months. You can always
stop. It may surprise you.

Wow, that sounds awful, Kelly. I do have rheumatoid
arthritis and it was diagnosed in three months so I'll
have to consider myself lucky. My doctor wouldn't give
me anything until he could figure out what it was. He
said prednisone could alter the test results. He did
blood tests, MRI's, 2 nerve conduction tests etc.
After $10,000. worth of tests, the RA one was
positive. Then he put me on prednisone until I could
see a Rheumatologist.
I just reread your email and something jumped out at
me. The Flu!!!! That was the one symptom that I forgot
to tell my doctor. When he heard that, he had the
blood test for RA and for Lyme disease done. I felt
like I had the flu for 100 days. Prednisone got rid of
that flu feeling for me. Does it work for you?
I sincerely wish that someone figures out what you
have soon!! I do take 10mg of Methatrexate a week by
injection. I haven't had any real problems on it. It
was making me nausous for two days after I took it. So
I started taking it before bed and also taking a
vitamin on those days. It seems to help.
As I said, I hope you get some help real soon, Kelly!
Maureen

Hello everyone. I read most of my digest that is e-mailed to me
daily. I recently inquired about vitamin supplementation and would
like to thank the many for valuable input. I wish that I had the
time and energy to respond daily but am not very articulate after
working long days and trying to manage this disorder. For almost 18
yrs. my professional life was in Nursing. I left in 1997 and now
work in a unrelated field. Having been out of medicine for so long
leaves me feeling " rusty " . However, like riding a bicycle,
certain aspects never leave you. I am very proud of the many of you
who have taken such proactive steps in your treatment. I feel
hesitant to reveal my background in nursing to my physicians. I
sometimes feel hesitant in asking questions with that info being
known. Sometimes I feel as though I should know such and such
because of my background. My expertise was in Geriatrics. I should
also tell you that my nurisng experience with psorisis is almost nil
and had not even heard of it until it was suggested to me after many
failed courses of tretment and misdiagnosis' Like many health care
professionals, I was only given a limited amount of nutritional and
dietary study; much of which is now outdated. I must feel a great
level of comfort with this group to reveal one of my insecurities
here. Take this as a high compliment. Now I feel compelled to
address the many of you who have concerns over self injections.
Please be reassured that this is to be expected. You should not
leave your Dr.'s office without the physician referring you to
either their nurse (I guess med techs now) or to a clinic or local
hospital for instruction. I hope it helps for any facing this that
I as well as hundreds of millions in the health profession had to
conquer this fear. Quite frankly, most of would have preferred
attempting this on ourselves for the thought of causing another pain
or having them witness our fear made any self inflicted pain seem
trivial. Most of us learened by getting the feel of it by injecting
water into a orange. Belive it or not this feels very much like
injecting into human tissue. Of course, you will need to learn how
to read the numbers on a syringe to give youuself the corrrect
dose. Hey, they are just numbers, but accuracy is essential. In a
nutshell, my best advice is that it is a big of a deal as you make
it. I think that you should not be surprised attempting something
new and feling awkward. It usually gets better in less time than
you think. When I'm giving a injection to someone I always try to
distract them in a subtle way. Injecting into a tense site will
likely cause pain. So if you tense up, don't look at the nurse and
think that a lousy injection was given. At times pain can be
expected not because of the one giving it or tension but certain
medications have a high ph and burn like hell and little can be done
aobut it. Dilantin comes to mind. There are many others. I have
read that some of use are using ice to numb the area. I have
concerns over this. I'm not saying don't but please get a Dr. or
pharmasist's opinion. I don't believe that any of the home assigned
injections are anything other that subcutaneous (s.q.) This is
unlikely to cause dicomfort to warrant any numbing actions. I can
see why it would be of psychological benifit though. I think that
if you really feel tense that a nice warm shower would be
bernificial to relax you, provide additional cleanising prior to
injection etc. Relaxing is great, numbing not always. Also, I hope
that all of you that insist on using ice always follow with the
alcolhol wipe prior to injetion. Ice looks clean but just think
about it: Multiple hands have likely been around that ice and even
though it came from a freezing enviroment it can still be
contaminated. You never know if some sort of liquid from chicken,
meat, etc could have been in contact with it. A few years ago, here
in Miami, several cases of hepatitis were traced to a ice coming
frim a machine. I know that it is just a minute pinprick of a hole
but in fact it can provide opprotunity for diease to enter your
body. There are several modes of transmission for diease that
differ according to the organism. Common colds, etc. are airborne
and easily spread through sneezing, ets. Aids and hepatitis are
spread through contact of bodily fluids. Why do you think health
professionals panic if they accidently stick themselves after
injecting a patient? We know that this tiny pinprick of an area is
all it takes. I mean to educate all of you, not frighten you. The
fact is it is highly unlikely that you would become infected. Think
of it as the same reason that you wash your hands after using the
bathroom. Also, a alcohol wipe does not sterilize the area.
Alcohol defats the superficial olily area that most of us have on
our skin which holds much bacteria. Its essential to use one prior
to injecting but if you had been let's say outside mowing the lawn
or doing something where you got rather dirty, its not enough. Good
old soap, water and then the alcohol wipe, okay. I have tomorrow
off. I will try to address more later. I hope that I didn't bore
any of you. Thank you for making me feel so welcome. Carolyn

Now that I am doing so much better, it is like I woke up from a three-year
fog! I look back and wonder how I kept functioning as teacher, mother and
wife. The answer is...not really well.
Chronic pain brings fatigue brings brain fog.
Ease up on yourself. The stress of worry just adds to the problem.
Ks Di

People who depend on may have to wait until March 2005 or longer per
an FDA new article on December 17, 2004. Xanodyne sold it rights to
MTX to a company called Mayne Pharmaceuticals. (888)-606-2245.
American Pharaceuticals (800)551-7176 is opening a new manufacturing
place in Switzerland which is not up and running. The FDA is trying
to get them in gear. (FDA.com).
Problem is that the MTX drug with preservative has not been available
since October.
This Drug was a miracle for me. I went from being completely bed
ridden to working full-time. It gave me my life back. I intend to
write several letters expressing the urgency of this matter. This
might mean that I will be back in bed for a possible of 5 months.
This is not acceptable to me. If anyone else feels this way please
call and write letters to these companies and the FDA.
If anyone knows of a drug that works as well as the injectable mtx
with preservative. Please let me know. My doctor doesn't have
confidence with Enbrel and I am scared.
God Bless,
Carolyn

Hi Kathy;
I was also on MTX for 4 years before I learned about AP.The
consequences were horrible,lost my hair and nearly went into liver
failure.I brought it down from 7.5 mg to 0 in a month and did not feel
any worse.It suppresses the immune system which is crazy.One need a
strong system to fight disease.After gettin of of it along with gluten
and the foods that I was sensitive to,I was in remission in less than a
year.Now I could kick myself for wasting all that money on Mino during
that time as it could not do much under the circumstances. Lynne G.SD

Has anyone else had any problems or should I assume it is rare? I
haven't found much on the Internet.
Suzy (who does remember she asked this once already) (smile)

Hello, all
I am searching for a doctor in south Florida for antibiotic therapy.
Can anyone provide a doctor they know or have used?

I also agree with Karen. I suffered with cluster headache/migraine for a long
time. My GP prescribed 10 mg of amitriptylene and it definitely improved sleep
patterns. I have since stopped taking it after 2-3 years. I just started 15mg
MTX per week and I notice that I have not been sleeping as soundly. I may have
to start taking the amitriptylene again. A tip for its use is that if you have a
hard time getting up in the morning then take it a little earlier in the evening
( I usually only get up at 8:00 -8:30 and have full time job..I need 9 hrs a
night otherwise the migraines start). I used to take it right before bed time
(11:00-11:30) and was always zonked in the morning. Part of this maybe be the
tiring effects of PA..I don't know.
Dave

Hi there Janet :)
I live in Canada, so we're pretty close to legalizing it, and it's
prescribable here, so that's cool.
Glad to hear some feedback on the Flurbiprofen, I've been doing a
little research today on it, seems harmless enough anyway...but I'll
keep an eye out for hives..hives are kinda like mosquito bites, right?
Thanks for the feedback :)
love and light
Crystal

In a message dated 12/20/2004 8:25:34 PM Eastern Standard Time,
turrelle@... writes:
She also wants to take me off the Naproxen and put me on Flurbiprofen
instead. Anybody know anything about this stuff? It sounds like
ibruprofen....?
She also has signed me up for a marijuana for pain control study, and
is willing to give me a perscription for it, so that's cool.
Wow, Crystal,
Looks like you had a great experience. Don't worry about injecting
yourself. I was so scared to do it the first time and after it was over I
couldn't
believe I stressed out about it that much. I took Flurbiprofen years ago
and it really helped. It is generic for a drug called Ansaid. It worked great
and then I started hiving from it and had to stop it. Where do you live
that they want to do a marijuana study. You must not be in the states. Well,
take care and good luck.
Janet

Hi Michelle;
I am Celiac also.Usually rice and corn are o.k.So many prepared
foods have gluten in them and you really have to cook from scratch,soy
sauce,ketchup and all mixes and sauces just about have some.It take
12-18 months to clear it from your body
Lynne

Hi Fran,
I'm so sorry that you are going through another setback. I hope your
procedure is painfree and it helps you as well. I'll be thinking of you.
Janet

First let me apologize for not changing the topic of my post.? I had thought I
did and was rather surprised that I evidently didn't.? So, several months ago,
there were several people who posted ingredients for sinus irrigation.? I would
love it if you can repost that.?
thanks
Melinda

Ok, now THAT was what I expected a first visit to be about. This
doctor checked every single movable joint in my body, tested blood
pressure, eyes, etc. She asked me alot of questions, and then I got
to ask her all mine. All total I was there for about an hour and a
1/4. The Results are currently as follows:
the rhumy wants me to start taking injectable MTX, as the 20mg dosage
doesn't seem to be having any affect on anything but my psoriasis.
None of my joints have changed, and in fact, more have become
involved. So I guess starting in the new year I'm going to have to
learn how to give myself injections...BRR!!! I will need your help on
this folks...i'm so scared of needles, just typing this out is making
my eyes well up with tears....
She also wants to start me on Plaquenil, as apparently MTX and
plaquenil together work pretty darn well, Imagine, an anti-malarial
drug working together with MTX works better. Funny thing that.
She also wants to take me off the Naproxen and put me on Flurbiprofen
instead. Anybody know anything about this stuff? It sounds like
ibruprofen....?
She also has signed me up for a marijuana for pain control study, and
is willing to give me a perscription for it, so that's cool.
She sat and patiently answered every single question I had in my
book. We covered different drugs, why and when they should be used,
physiotherapy(which she suggested I look into for my back, which she
says is definatly involved) MRI/Xrays, what I expect in a care giver,
man..every single question I could come up with.
That was a MOST positive visit. She also told me that although the
rhumy I went to see before was an excellent rhumatologist, that an
initial visit should take more than 10 mins, which is about what I
had with him. She said she's heard about his manners before, and was
shocked when I told her that people I'd met here on the boards have
had experiences with him as well, and that we networked the way we

Hello
may I ask you how many capsules you get for 150 $?
thanks
soheila

Just wondering, do any of you have Erythema Nodosom also? (red bumps
under the skin. Flares are very painful) I would just like to know
because I do and it is also an autoimmune disease.
Sandy

Sorry...I am Martha Minneci who owns a flower shop in Tennessee!!
************************************** See what's free at http://www.aol.com.

Hi Karen,
My Rhuemy took me off the MTX becuase it wasn't helping much and left
me on just enbrel. After stopping the MTX my psorisis came back and
pain got worse. Now as you know, he is putting me on the remicade. I
asked him about the MTX and he said he doesn't want to restart it. He
wants to see the results of the remicade alone. I know personally, if
i get good results with just the remicade than I don't want to add
another drug to the list of meds I already take. I am glad you have a
Rhuemy who will work with your wishes.
Gentle Hugs
Pat

Hi Shari,
Glad to hear there is a fellow Long Islander out there. My son lives in
Long Beach and I live in the East Meadow area. I have had PA for many years
probably but was diagnosed about 2 1/2 years ago and have been on the board for
a while. The people here are great and so is the support. I don't know what
I would have done if I didn't find them.
Janet

i used minocin non generic from lederle purchased in canada for 3 years
and did well on it. i've heard that non generic is important.
monique

Gentle hugs, Fran. We understand.
--Allison
=====

Okay, so I'm wondering what everyone's thoughts are on biologics versus mtx....
I realize the biologics are almost always given with mtx as the combination is
the best, but they don't have to be and I have been thinking about trying to
exist on just one once (cross my fingers) this flare subsides. I was heading
towards the Remicade, as it so far has been a miracle drug for me (even without
the mtx ~ as I wasn't taking it when I recieved the very first treatment), but
the doctor feels if I try to make it on just one, he would recomend (although
would agree to my wishes) only because of it's proven track record (people have
been taking this drug for years and years and so they sort of know what to
expect after long term use), with the biologics, they don't yet. It isn't as if
they expect there to be issues, but they simply don't have the data yet...
Thoughts??
Karen (idaho)

Hi Pat,
I loved remicade. It has been my favorite after 37 years. The side
affects can be scary all right. good to keep watch for them.
I actually had fewer infections than I did when taking MTX. Once I
went for a treatment and just felt a little under the weather which
is pretty normal for me...they found a slightly elevated temperature
and sent me home. Seems the tuburcolosis problem is almost completely
gone since they started testing for latent TB before giving the med.
They do watch for the congestive heart failure now. I had to stop it
when I got numbness in my feet, hands, and face,,,it can cause some
central nervous system things...when i stopped it my symptoms went
away..apparently that stuff is reversible.
I saw a few people with small ports put in due to their vien trouble.
My viens got worse as the treatmnts progressed...
so...the good news: my skin cleared within 2 weeks. My joint pain
subsided considerably after 3-4 months. I would consider taking it
again if they offered it to me.
Hope this helps you,
Marti

Dear Mr.Popatlal,
If you are still in India and if you have few days time to spare before you
need to leave India it is davisable to go for a course of treatment in any of
the Ayurvedic hospitals in Kerala where there is effective system f or
management of arthritis.Even though Ayurvedic treatments are available in most
of the Indian States there are a number of well known hospitals here which
specialise in this particular ailment. These hospitals are run mostly by
traditional houses who have centuries old experince besides they have updated
the system to meet the needs of the modern day.
My wife has been suffering from arthritis and we had taken treatment in the
Kottakkal Aryvaidyasala, Malappuram district Kerala and we have benefitted very
much.
The medicines are non toxic and can be taken for a long period.
You may visit the site www.aryvaidyasala.com
Phone no 04832742216--19
Please note that we are not connected with this institution and we have no
business interest in providing this information.
Regards,
P.K.Menon

Dear Group,
By now you would think, there isn't much this disease could throw at me
that would catch me off guard. I mean I've gone through allergic reactions
to several drugs, doctors who didn't know what I had, many years with out a
real diagnosis, and the pain never completely ever leaving me. But yet
still it manages to surprise me.
I've been taking it easy the past few days, since you know I was going
nuts with Christmas..lol and my 4 crazy little Christmas trees. Which are
all still standing by the way and never did make it to the swimming pool...a
real accomplishment for me. Well last night my husband and I were watching
a movie and I'm in my recliner. I got up to get some water and suddenly I
felt like someone was stabbing me in the back of my upper thigh. It thought
well this is new, but maybe it's a freak pain that can go as fast as it
came...hope, hope, hope...Well I should have known better and I shouldn't
have been surprised.
Today my leg is so bad I can't put any weight on it at all without wanting
to scream. I can't figure out if the pain is coming from my lumbar disc
area, where I know I have another bad bone spur, or it's bursitis back in my
hip with a vengeance. I just had my hip injected about 3-4 weeks ago and I
doubt very much if I can talk the pain doctor into doing it again. When he
did it, the pain was totally gone. I couldn't believe how much better my
hip felt, but now the pain is worse than ever before. I'm wondering as the
shot wore off, could it have made the pain actually worse? The bad thing is
sitting even hurts. It feels like I'm sitting on a sack of sharp rocks and
they are digging into my flesh. The front of the thigh was where the pain
was before and it still bothers me, but the new pain has taken everything
else from my mind. I'm not even noticing if my hands are still burning or
numb. They are still red, so I'm guessing the burning is still going on. I
had a doctor tell me once that if the pain is bad enough, your brain will
only let one spot get through at a time. (I guess? that is something to be
thankful for?)
Has anyone ever had bursitis in the hip this bad? I suppose I could be
dealing with just arthritis and not bursitis, but the pain doctor was
positive based on where the pain was coming from it was bursitis. I'm so
discouraged because Christmas is only a few days away and I was thinking
this year, I'm so much better than last year and it's going to be a great
holiday. Don't get me wrong, I'll still have a good time with my family and
I wont' let them down, but it won't be the same with this constant
unrelenting pain.
I'm going to call the pain doctor tomorrow, and I"m scheduled for physical
therapy on my hand. There is no way I can do that now since just walking
into the place is going to be impossible, let alone sitting there trying to
work on my hand. I won't even be able to tell if it's any better or not.
The problem is even if I can get my doctor to inject it again, he's gone
until the 22nd and the 23rd. Well if anyone else has ever had this type of
pain, let me know if you have any secrets or tips that can help me in the
meantime.
I keep forgetting that PA is a disease that just keeps on giving... Take
care everyone and have a pain free holiday. Love, Fran

That would depend on what organism(s) you are dealing with. When treating
these diseases, Zithormax is often prescribed along with another antibiotic
and sometimes it is prescribed alone.
Ethel

Hi, Pat!
Looks like you and I will be going through this at
about the same time. I get my first dose this
Wednesday, 12/22.
I'm nervous too. From what I've read, Remicade has
been flagged for its potential side effects related to
blood disorders and lymphoma, and for increasing
chances of infection. That concerns me, but I'm
willing to give it a go. But that doesn't stop me from
asking myself at least once a day -- do I really want
to do this?
What pushed me over the edge, along with the constant
frustration of PA, are comments by my friends: Just
when I think I'm having a good, low-pain day, someone
says something like, "You're limping more than usual
today. Are you okay?" <sigh
I had a long chat with a co-worker who has PA and has
used Remicade for over 2 years. It works wonders for
him, and he's never experienced any disturbing side
effects. His joints are much improved and he has a
spring in his step, but after 2 years he's getting a
few scales again. We work in a IT training school, and
his wife runs a daycare in their home, but with
common-sense cleanliness, frequent handwashing, and
alcohol gel santizer, he stays healthy. In fact, I've
never seen him miss work for illness.
He gave me three pieces of advice:
1) be fully hydrated before and after the treatment to
help plump up your veins, and avoid caffeine and other
diuretics that day.
2) don't make any plans for the remainder of your
treatment day -- expect to be fully exhausted /
fatigued. (Just to be on the safe side, I'm planning
to take the next day off, too -- I'm ALWAYS fatigued
anyway and I have the vacation time available).
3) take something to read. The infusion takes about 2
hours, and they keep you for another hour or two
afterward to make sure you don't have any adverse
reactions.
When I warned the nurse who will be administering my
Remicade that I have small veins, she told me to drink
plenty of water and assured me she uses the smallest
possible needles.
I had a choice between Remicade and Enbrel. I chose
Remicade because I really HATE the idea of
twice-weekly injections with Enbrel (3 years of weekly
allergy shots in both arms will do that to a person).
Also, the full cost of Remicade is supposed to be
covered by my insurance company, rather than the high
pharmacy co-pay with Enbrel.
Good luck, Pat! I'll keep you posted on my experience
so you'll have more information before you go in. If
you learn anything new, please post it, too.
Hang in there!
-- Allison
=====

I completely understand your point. I tested .4 for Lyme AB Detection-EIA and
it showed that <1.21 was low. DId not say what was high, I assume anything over
1.21. Their scale is evidently different than the one used ofr your wife but I
too wonder what .4 really means? What makes 1.21 specifically a positive result?
Seems like an arbitrary #...
jkrutch2000 <jkrutchik@...
a Lyme test done and the result was
"negative", however, the result was .02.
A borderline positive is .03 and a .04 is positive. What I don't get
is how anything above zero can be considered negative. You either
have the antibodies or you don't...what am I missing?
You can't be a little pregnant....

Linda,
I'm in the U.S. -- Kansas City MO.
Folbee is a generic form of Foltx.
http://www.foltx.com/content.php?pg=PackageInsert
My rheumy prescribed it to replace my regular folic
acid supplement because I was experiencing extreme
fatigue. The tablet (folic acid, B6, B12) regulates
homocysteine levels, and is prescribed for people who
don't seem to be absorbing nutrients properly.
Hope that helps!
-Allison
=====

To the group,
I am worried I am going to forget to wish everyone a very happy and
less painful holiday season. Thank you for a year full of wonderful
advice and concern. I am thankful for each and everyone of you, and
wish that everyone is able to make some wonderful memories this
season, not based on pain.
Gentle hugs
Pat

I just read an ad in Alternative Magazine about a new book titled Natural
Therapies for Emphysema and COPD. I have not checked it out (the website is
www.innertraditions.com <http://www.innertraditions.com/
provide this info and also ask if anyone knows of the book, can recommend
it, or even better knows someone with COPD that actually got better
following the recommended therapies. Many thanks for your consideration of
this off-topic issue. El
The exact link is:
http://www.innertraditions.com/Product.jmdx?action=displayDetail
<http://www.innertraditions.com/Product.jmdx?action=displayDetail&id=2218&se
archString=1-59477-163-4
_____

Hi Everyone,
I just got the approval for remicade and my first infusion is Dec
30th. My insurance turned down the request for Humira. I am really
scared about the remicade because what I read so far, it seems there
can be quite a few side affects.
Does anyone have any experience with it? I also have terrible veins
and know they will have a hard time with starting the infusion, but
that is the least of my worries. It says that the FDA put a black box
label on it, because it can have bad side effects some leading to
death.
My problem is I have to try it because the enbrel stopped working and
I am in the middle of SSD application and don't want it to look like
I am going against treatment. I know when you research meds all the
bad stuff pops out at you. So I am trying to keep a postitive open
mind. I know it can help alot with both the PA and P. It is just
scary because of the risk of infection and cardiac problems.
Anyway, if anyone is on Remicade please let me know your experience.
Thanks
Pat

Kathy,
You might want to have your medical folks test you for Lyme's Disease. I
have that and can relate to a lot of your symptoms. El
_____

Hi Annie,
I am a bit of a lurker as they say but I fealt that I just had to say
something about your story.
I too have been through the false nail thing. As my work involves a
lot of paperwork and my nails are constantly on display as I show
people which bits they have to fill in and/or sign, I became very
self conscious of them. So for years, I went through the process of
getting fibre-glass nails attached.
In the end it became rather costly and I now just manage by making
sure my own nails are sanded back and covered in nail-polish (dark of
course as the light ones show too much of the pitting!!!)
When I read your story, I thought what a lesson it was to all of us
who worry about the way we think other people look at us.
Congratulations - May you have many many years of wedded bliss.
Thank-you for reminding us all that it truly is what's inside that
counts!!!
Sue from Australia

In a message dated 12/18/2004 11:38:17 AM Eastern Standard Time,
k1p1braz@... writes:
Hope my hands are ok, as I want to cudle and spoil this ittle baby
Margaret
I hope so too. I can't wait to be a grandma. My daughter is getting
married next year. Have fun and Merry Christmas.
Janet

Allison, I took copy of a previous message of yours about the Folbee tablets to
my rheumie and he confessed to never having heard of that particular tablet.
Are you by any chance in the British Isles or Australia where the medication
might have a different name? Thanks. Linda in the old state of Wa.

Just want to wish you all a happy and painfree Christmas. my son,
partner and my brand new(2 weeks old) baby grandson are coming on
Tuesday for the holidays. As they will be using the bedroom where my
computer is in may not get the chance to post later in the week.
Hope my hands are ok, as I want to cudle and spoil this ittle baby
Margaret

In a message dated 12/17/2004 8:20:47 PM Eastern Standard Time,
xytably@... writes:
I think we should do a fundraiser at all local shopping centres on
international PA day (whenever that is) involving sponsorship of PA affected
people
in a race around the inside of the centre.
HA...that is funny! But seriously, if you ever want to fundraise for PA (in
the US at least), there is an internet site called i-give that is linked to
online retailers. If you go to i-give first, then go to the retailer site
from there to shop, i-give will donate a percentage (paid by the retailer) to
the charity of your choice. NPF is one of the choices. I do a lot of
shopping online, and love that I can do this. Each purchase is usually only a
$1-2
donation, but it adds up over time. There are hundreds of retailers to
choose from, and all of the "big" names you may already be shopping at...
Rachel

Thank you for the wonderful response Tracy. I'm sorry to hear that you are
having such a time with your pa, but I am so grateful to know that you have some
fantastic support! Just give that fiancee of your's a great big hoorayyyyy from
me and Merry Christmas to you both!
Hugs, Annie in the Valley

Yes, I have always had P inside the ear canals from 8 to 50, it has been one of
the grossest indignities of the disease. One gp said don't use cotton buds, use
hair clips (bobby pins) the curve is perfect to scrape excess scale outward,
whereas the cotton bud may push them further in. I haven't tried putting
daivonex in their yet, but it should be helpful on a temporary basis. I am sick
of people looking strangely at me when I am picking stuff out of my ears that
drives me insane with itchiness. It is like having cockroaces dancing on your
eardrums. (Not that I have ever experienced that sensation! Thank goodness!)
Marilyn

They announced on Fox News today that Celebrex has been found to double your
risk of heart attack. It seems that if your risk as low the benefit may be
worth it.

Your welcome Karen. I'm glad I you appreciate the efforts and I'm also
thankfull that you and everyone else here have done the same for me. I've
fought a
long and lonely battle with this disease and I hate to think where I may
have
been if not for stumbling in to this group and finding others who can
understand and relate to my sometimes overwhelming challenges.
Orin
That was Superb, which was a good reason to be alive when I read what you
spoke about, for if I was not here I would have missed out on seeing your
great post. It made me smile so much, full of energy and so truthful.
Thanks for cheering me up, I'm still smiling now just thinking about you at
the Temple. lol
On the subject of STAT3 I'm with you on that, it does seem to me that this
time they might have actually got to the bottom of psoriasis I really do
hope so... One to keep an eye on, if you here anything before us then please
keep us informed.
Micky

I suspect we are all trolley huggers, too vain to accept walking aids, and
viciously bopping family members over the head if they try to commandeer our
faithful supports in the weekly shopping excursion. I think we should do a
fundraiser at all local shopping centres on international PA day (whenever that
is) involving sponsorship of PA affected people in a race around the inside of
the centre. Donations from every shop passed could impose handicaps on the
leaders by heavy items dropped into the lead trolley, and the shopping centre
should provide a wheel jam repairer to get the trolleys in prime condition
before the race. The winner gets 6 months hire of one of those wicked scooters
that old people ride around on terrorizing the neighbourhood!
Marilyn

yes, I can relate-there is a good book I just ordered
called "But you look good!" here is the link:
http://www.myida.org/ordersus.htm
there are also other good pamphlets-"why dont they
just take something?",etc & books on there with info
about explaining things to others.
Sad that these are necessary.....
Deb

Contrary to what some people may have heard and read earlier, Pfizer has not
removed Celebrex from the market. They have withdrawn its use from a cancer
study - NOT from the market. At this point, Pfizer has said that it has no
plans to withdraw Celebrex from the market but it is obviously reviewing the
information made available from the cancer study. If you have any concerns,
please talk to your doctor. It can be harmful to stop taking medications
suddently.
Kathy F.

Another way to think about PA and how we live our lives...
Life's journey is not to arrive at the grave safely in a well preserved
body, but rather to skid in sideways, totally worn out, shouting "holy s**t,
what a ride!"
Take care and have a great day. Love, Fran
a..

This may sound strange but I have found that people that were once
close to me have changed since I have been ill and forced to retire
early. This includes my own Mother. I have Systemic Lupus, Scleroderma
and Myasthienia gravis. I like most of you have terrible pain but when
I take my meds I can for the most part function especialy when the pain
meds kick in.I have had several opperations to connective tissue areas
like carpal tunnel and rotator cuff if the shoulders, back surgery. And
got some outward signs like shinny skin on my forehead and side of face
and yes sometimes those butterfly's. I walk with a cane alot and some
times walk with it because I know the day will grow worse between pain
pills and activity. Yes I look normal most of the time and can even
move good at times. but the comments keep comming like your a faker or
you better not let people see you do that. I was dx with
COPD,ANTIPHOSPHOLIPID SYNDROME OR BLOOD CLOTTING DISEASE,ARTHRITIS TO
MENTION A FEW. Why do people hate people that are sick? does it happen
to you also please let me know. I refuse to defend myself anymore with
telling people how I am so now even if I feel terrible I say good.
take care all ,
Vinny

In a message dated 12/17/2004 8:02:41 AM Eastern Standard Time,
miamired2004@... writes:
[Editor's Note: Please be VERY careful before you do anything to boost your
immune system. PA is NOT caused by an underactive immune system, but rather
by an immune system gone haywire.
Hi Kathy,
I have been taking Ester C and grapeseed extract. I was told they are
anti-oxidents and I figured it would help since I am on the Enbrel.. Have you
heard anything about them since I don't want to defeat the purpose of Enbrel?
Janet
{Editor's Note: No, I haven't heard anything, but I would still ensure that
your rheumy is OK with your taking them. Please let us know what he/she has to
say. Kathy F.]