Auto-immune diseases

Dave was feeling a little better yesterday, BUTTTTT to make matters worse
he was bitten by a Hornet on the back of the hand. It blew up like you wouldn't
believe, so off he trotted once again to the docs. All was well with the bite,
just to continue putting ice packs on it. When asked how the RA was, Dave
replied getting better slowly. Doc had that grin on his face (really bugs me)
and said I new you needed the prednisone keep it up you have to have it. If
only I could make him understand it was all done with patience and support from
this group, his script is still sitting on the sideboard.
Dave still isn't out of the woods yet but things are looking a little
brighter, i.e.;- out of bed for short bursts and his sense of humor is poking
its head out. I got him some St John's Wart this morning, and the lady at the
health shop was telling me her 22 year old daughter has just been diagnosed with
RA, so have passed on all the info as they were looking at alternatives.
Hugs to you all......LINDA

Hi guys did not want anyone to feel slighted. Because of security reasons I
never open mail with attached files, I delete them. so if you have sent me and
mail with attached files if you could send back in an unattached file then I
could read what it is you have to say. Thanks BTW my health is slowly
improving. Just need to know how long a brain can simmer at 104 degrees before
you get a little fried. Kelly

I think we all, well actually only those from the states, should write to our
congress, and senate to support this reform. Certainly we all know how
expensive these diseases are.
<A HREF="http://www.aarda.org/adv_issue_4.html"
Reform</A

Hello, Everyone. Glad you're all back. :-)
This is probably old news, and I may have missed correspondence about this
subject, but did anyone see James Colburn on Regis & Kathie Lee recently? I
missed it. And I know I've seen numerous posts regarding MSM in the past.
What is it? And what does it do? Also, I heard third-hand that Colburn used
some sort of "electro-magnetic" therapy for his RA. Anyone know about this?
I'm desperate. I'm in hell. I've had RA for only 2 years this month, been on
minocin for 19 months, and the only thing keeping me here (on earth) is the
fact that I have 2 little boys depending on me. I'm constantly in
excruciating pain from the top of my head to the tips of my toes. Can't move.
Can't function. Taking far too much Motrin. Don't know what to do or how to
hang on.
Help!
Lisa

If this isn't a contradiction Ill eat my chocolate. NOT
But talk about medico tech babble. Does this guy takes too much prednisone?
No they are mostly all this way.....................
love and prayers Robert Root

Lately when Julie (5 years old with linear scleroderma) goes out to
play when she comes in her cheeks, which should be a nice pink colour,
now are pink with whitish centers. Today was quite a warm winter day
and the sun was shining and she warmly dressed with hat, scarf and
mitts. Does anyone have any idea what this could be?
Jodi

SAN DIEGO, CA -- Nov. 11, 1998 -- Methotrexate, prescribed by
rheumatologists for decades, reduces the risk of death from rheumatoid
arthritis complications by up to 50 percent, according to research presented
at the American College of Rheumatology national scientific meeting.
Rheumatoid arthritis is a debilitating disease that affects one percent of
the adult population. It causes pain, stiffness and swelling in many joints
and, unlike osteoarthritis, often strikes at an early age. In its most
severe form, it is associated with a shortened life span.
Researchers examined records of nearly 2,000 patients over a 25-year period,
who were on any combination of six different DMARDs (disease-modifying
anti-rheumatic drugs), including methotrexate. Controlling for disease
severity and other variables, the researchers found that those patients on
methotrexate alone had half the mortality hazard as the average patient in
the group.
"Methotrexate is an effective RA treatment, but whether it or any other
DMARD actually improves long-term outcomes has not been clearly determined,"
said lead investigator Frederick Wolfe, MD, of Witchita, KS. This
demonstrates that methotrexate does, in fact, alter the course of rheumatoid
arthritis."

Does anyone know anything about IV hydrogen peroxide therapy? Is it
dangerous? Is it helpful for rheumatic illnesses?
Jodi

Now all you luvly people are back online I'm hoping someone can help me find
out the difference between ESR (sed rate) and CRP (C reactive protein). I
have looked up some sources on Sarah's links page and found that both
measure inflamation and there is often a correlation in the two measures.
However in the past 3 months my ESR has gone up - 58 62 68 ; while my CRP
has come down - 70 62 45 .I had a flare/herx in Dec but am feeling good now
after 6 mths on Doxy, dont feel the way an ESR of 68 would have felt pre AP,
so am a bit puzzled.
Barbara , RA 22yrs AP 6mths

http://chronicfatigue.miningco.com/library/weekly/aa012799.htm
--
Clark Signs:
http://members.xoom.com/sclark/
AP Support Group:
http://www.geocities.com/SoHo/Gallery/6412/
Lots of arthritis and health links:
http://www.geocities.com/SoHo/Gallery/6412/supportlinks.htm

http://neuroscience.miningco.com/library/weekly/aa012599.htm
--
Clark Signs:
http://members.xoom.com/sclark/
AP Support Group:
http://www.geocities.com/SoHo/Gallery/6412/
Lots of arthritis and health links:
http://www.geocities.com/SoHo/Gallery/6412/supportlinks.htm

Heres the url
http://lupus.miningco.com/library/weekly/aa011899.htm
--
Clark Signs:
http://members.xoom.com/sclark/
AP Support Group:
http://www.geocities.com/SoHo/Gallery/6412/
Lots of arthritis and health links:
http://www.geocities.com/SoHo/Gallery/6412/supportlinks.htm

Heres a mining company article defending the use of aspertame against the
adverse reports up on the net. Sure made me see red!
Sarah
--
Clark Signs:
http://members.xoom.com/sclark/
AP Support Group:
http://www.geocities.com/SoHo/Gallery/6412/
Lots of arthritis and health links:
http://www.geocities.com/SoHo/Gallery/6412/supportlinks.htm

Hi everyone,
Don't know if this person emailed anyone else, but thought, if not, some of
you might want to respond to him. Send replies to spacific@...
Thanks,
Kim :-)

Sunday
January 31, 1999
I am so glad to see that the email is up and working again. I have certainly
missed it. I went to see my Rheumatologist last Wednesday. Once again, I am
"the perfect candidate" for Methotrexate and Prednisone.
Just to remind you all, I live in Germany and have to drive 4 1/2 hours to see a
military Rheumatologist. The only one in Europe! The Doctor I had been seeing
from April 1997 until May 1998 decided to leave the Army. We now have a new
Rheumatologist. This is my second visit with him. On my first visit, I told
him that I was on Plaquenil 400mg daily, Doxycycline 200mg daily , Indocin 150mg
daily and Prilosec. I wasn't having any problems at the time (August 1998). I
was still having pain and little swelling now and then, but I was able to do
almost anything I needed or wanted to do. Except for opening jars! The Dr.
agreed to continue my medication as I had been since there were no problems and
even the blood work looked good (I'm sero-positive RA). My SED rate was down to
30 from 54 (I think).
In the last couple of months, I have been falling back a little with severe
fatigue, pain and swelling. I have two fingers on my right hand with
boutonnière deformities accompanied by 4 nodules on one knuckle, a trigger
finger on my left middle finger. These problems have been around since almost
the beginning. Now, I have the most painful left elbow. The problem with my
elbow just started around the end of December. The swelling is very noticeable
and there is a large round knot on the side of it. I cannot straighten it out
all the way anymore. I have been on the AP since June 1997. That is about 19
months. I have to say that I really do believe I have had some major benefits
from it. When I first started, I could barely walk, couldn't get out of bed by
myself, couldn't dress myself and ate only things that could be eaten without
being cut! For the first year I only left home when absolutely necessary. I
still have to have help getting my jeans off, I have trained my little schnauzer
to grab the end of the leg and pull! It works for me.
I have experienced several Herxheimer reactions along the way and I don't think
that is what it is now. My Dr. would like me to take 5mg of Prednisone daily
and then start on Methotrexate (going off Prednisone when the Methotrexate kicks
in). I have patted myself on the back for almost two years now because I was
able to regain some of my abilities and even feel a lot better without the use
of the drugs with scary names like Methotrexate! The Dr. says that I need to be
aggressive and do something now before permanent deformity sets in. He also
said that with technology the way it is today they can carefully monitor me on
Methotrexate and the blood work will show any problems long before they actually
happen. I just don't want to go that route. I have just gotten used to being
able to come and go as I want to without having to make too many allowances for
the RA. I've lived with the pain now for years, I just have learned to adjust
to it. The thought of starting a new drug and all the nasty side effects
doesn't appeal to me at all. I need some help here. If I am going to take
something in the class of Methotrexate, I want to try one of the newest drugs
available (i.e., Arava, Enbrel, etc.) I am not even 40 yet (until May anyway).
My Dr. suggested I ask people who are on or have been on Methotrexate about
their experience. I know some of you have posted about it before but I no
longer have those emails. Would you mind sending me some of your experiences
(good or bad) with Prednisone and Methotrexate? I would really appreciate it.
Does anyone have any other suggestions? I would like to stay with the most
"benign" treatment possible.
Thanks for your help.
JB

<<An eagerly awaited new painkiller, expected to have none of the common side
effects of over-the-counter pain medications, may have one serious downside.
The drug, from a class of medications known as "super aspirins" or COX-2
inhibitors, has already been approved by the federal Food and Drug
Administration (FDA) and is expected to be available by prescription within
the next few weeks. The drug is called celecoxib and will be manufactured by
G.D. Searle under the trade name Celebrex. But according to a recent report in
the Proceedings of the National Academy of Science, the drug may increase the
risk of heart attack, stroke and blood clotting disorders. Researchers studied
the effects of the drug on a beneficial protaglandin called prostacyclin. They
found that the drug suppresses production of prostacyclin, which is needed to
dilate blood vessels and inhibit clotting. Earlier studies had found that mice
genetically engineered to be unable to use prostacyclin properly were prone to
clotting disorders. Many older people who may want to take COX-2 inhibitors
for conditions like arthritis could be at risk for developing heart and blood
vessel problems from the drug. A second drug company, Merck & Co., is expected
to get FDA approval in the near future to market another COX-2 inhibitor
called Vioxx. COX-2 inhibitors were eagerly anticipated because unlike aspirin
and ibuprofen they do not block an enzyme known as COX-1, which protects the
lining of the stomach. Studies show that long-term use of aspirin and
ibuprofen are associated with thousands of hospitalizations and thousands of
deaths annually from stomach and intestinal problems.

Really missed you all- glad we are back on!
Can anyone that has taken C-Plus from Dr Franco let me know how they are doing
with this herbal remedy? Please tell me how long you have been taking it,
dosage, and results.
Carol*

<A HREF="http://bbs.msnbc.com/scripts2/post.dll"
Boards</A
the rest of the world by taking antibiotics. I urge you all to post on the BB
your opinion of this hogwash. Here is the link to the BB I started by posting
the following under antibiotics rgood4u Go get em gang! Kelly
Here is what I posted.
I could hardly believe it when I turned on Stone Phillips Weekend Magazine
health show and saw scare tactics, a dying baby, and guilt used to urge people
not to take antibiotics. Wake up Call folks Many diseases (like Arthritis, MS,
etc)are caused by mycroplasmas and are only treatable with antibiotics. Course
the medical world prefers that you spend $$$$$ on surgery, expensive treatment
which does not work, and shortens your life span by aprox 18 years. And you
may have noticed, at the end of the story the baby was fine, except for
hearing loss. I would urge you to give equal time to those of us who are on
antibiotic treatment, and not use scare tactics to keep people from getting
well. after all you stated that millions of scripts were written by doctors
for the cold last year and that all of them were wrong. I think that you are
wrong, and I think that it is good to know that there are some DR's out there
who take their oath to get pts well seriously. Now, about that equal time.....

Wendi
This is a great site hope you can access it .
If not write to me and I will send along the information
hugs Robert Root
http://www.risg.org/risglk.htm#Scleroderma

Usnomads@... wrote:
This message was for Janene. We have answered but would appreciate it if
some of you could send information and experience also.
Thanks, Chris.

Hi group,
Glad you're all back :) Steve set us up overnight and I logged in today
to find you all chatting!
I've updated our web page at rheumatic.org for the new server. Let me
know if I've stuffed anything up?
Some notes on the new server:
You can make any changes by going to http://www.onelist.com and clicking
on "User Center" at the left hand side. First time in you register and
then it will tell you which groups you're subscribed to. You can
subscribe/unsubscribe, change from normal to digest version and back
again and access archives of the list. Only members of the group can post
to the list and access the archives.
You can also send commands to the list via email:
To subscribe, send a message to rheumatic-subscribe@onelist.com
To unsubscribe, send to rheumatic-unsubscribe@onelist.com
To change from normal to digest, send to rheumatic-digest@onelist.com
To change from digest to normal, send to rheumatic-normal@onelist.com
You'll see messages from me using two different email addresses - it's
still me :) I'll get the group mail at work as then I can read and answer
in my lunchbreaks as I did before.
Hope this is smooth sailing from now on, and thanks for your patience
while we worked this out. It took a while longer than we expected as were
trying for other alternatives which didn't work out.
Chris.

For all you old timers, the following message was just received from
David Pippen.
Ethel
"I still get several inquiries a week on Sheila's progress. She
continues to do great. She said "I feel so good it's scary" a couple of
days ago. She has had no pain attributable to RA for the last several
weeks. Not even after a very stressful Christmas where our youngest had
emergency surgery to relieve a life threatening brain cyst. (She has
nearly fully recovered .... everything went great).
By the way, I will likely be a featured guest on ABC's 20-20 on Feb 14.
I was interviewed for a whole day concerning the work I have been doing
on electric blanket safety. The news correspondent is Arnold Diaz."

I took Earl to the pulmonologist Monday past. He wouldn't have gone then but
he couldn't get his rxs refilled. He had not been in 13 months. EKG was
good. The oximeter (hope that's right-looks like a clothes pin on the finger)
94%. Potassium was low. The xrays showed more lung scarring. He is much
weaker. Coughs more. Now either sleeps alot or sits with eyes closed all
day. He used to read or at least watch TV. He has lost over 70 lbs, much
of it fluid. The dr stopped one fluid pill, zaroxolyn, and left him on lasix.
But Earl started swelling again and this made the cough worse so I put him
back on the zaroxolyn.
Earl has been on a CPAP machine since before he was dxd w/sd. Dr. is going to
change it to a BiPAP. This one is supposed to DO some of the breathing for
him at night. He should rest better and thus feel better during the day. I
hope so.
I missed the mail. Glad y'all are up and running again.
Gloria and Earl (sd, in lungs, 3 1/2 yrs, AP 2 yrs)

I can't begin to tell you how much I've missed all of you. It's like I
missed my "fix" I'd like to say THANK YOU to all those who worked on the
new site.
I've had a wild time since I last posted. I work for the County Health
Department. There is a parking space about 1/4 of a mile away from the
clinic where I work. It is free parking. Until Dec. I paid $84 a month
to park next to the building. They closed the lot and I was left to walk
the 1/4 mile. I did that for 4 days. Every day at lunch I had to sleep
and i was in bed at 9 every nite somtimes with a nap after work. I also
put in for family leave at about the same time that I asked for a
handicap park space.The family leave was so I could make appts and take
off when I had flares without being hassled. I was turned down for both.
I wrote to the EEOC (equal employment opportunity commission) they deal
mostly with the disabled. Any way I had a "meet and discuss" with the
county lawyer and a personel jerk. I had a counsler. She was very good
but nothing was settled. The county felt since I now found another lot I
should just pay for that; after all other people may want a free spot
too!! Now I have to have a letter from my doc that says wht I shouldn't
walk to work,work 7 hours and then walk back to my car. I don't know if
she will do that. So whoever is praying please send a few prayers my
way. Thanks.
I also was in the hospital for hives. Aparently since I am very allerguc
to sulfa I shouldn't have taken the MSM and the SAM. I had hives for 4
days even after IV's of prednisone,benedryl and zantac. Then back to the
hospital for a shot of atarax! Anyway I had a real teriffic RA week
after that. I was feeling no pain!!! I am very suprised I didn't have a
flare after that. I wrote to Ethel since it was time for my week of
Clindy IV's and she suggested I hold off. Too late I already had two
days in and I wasn't going to stop. I really worried I'd either get the
hives back or my stomach was so messed up I'd get the C-deficil or I'd
get a nasty flare. Well I feel just like I did before the hives but I
only take a Oruvail every third day or so now. Took it twice a day
before.
Not used to all this typing anymore,wrists are hurting,so again---It's
good to be back on line with a great group.
,
Cooky

Hi ya, just a note to you all to watch out for the Flu, and if you get it
watch out for evil ER room nurses. I have had a fever of 104 for the last 24
hours, finally got it to break in the early am. Woke up drenched with sweat.
They wanted to admit me at hospital, but I said no after meeting said lovely
ER nurse and the nutso they had who called his self a doctor. I tried to tell
them about AP, mycroplasmas, and please let me see what medications you are
giving me and let me decide if I will take them or not. I had to get myself
out of there before I passed out and they gave me some methotrexate and
steroids.
I must admit when I told them I produce a TV show and am a volunteer for
Oprah online they were less than impressed. They did not believe me. when they
finally let me return to the lobby to wait for my show to be over and my tech
director to show up and take me home, the evil nurse told me I had to leave
the premises. I said I was waiting on my ride and she said who and I pointed
at the TV where my show was on the air and I said they are going to be here to
pick me up as soon as they clean up the studio. I said the name of my tech
director who also does all of their computer systems for that chain of
hospitals. The nurse said no the people on the TV will not be here to pick you
up, so I called the station again and said please hurry. My tech director did
hurry, and arrived just a minute or two before the cops which was lucky for
me. I do not do high temp fevers well. When I got home Was sure I wasn't
gonna make it through the night. Finally I got enough sense to take some
Tylenol and managed to break the fever.
Well, I am rambling here at this point so get your flu shots and stay away
from hospitals especially the St. Francis Hospital in Santa Barbara. You could
die there. Kelly

Hi Everybody
Thanks to all who had a hand in the hard work it must have taken to get us all
back together again. I have missed everybody so much. It's 6:30PM Saturday and
I just found all the messages, can't put in to words how much this means to me.
Hugs to all,
Jani

NEED TO FIND OUT WHICH ADDRESS TO USE

Whew!!! I made a huge mistake by replying to Steve's message concerning
our new group asking for feedback on the advertising on the bottom of
the messages. I just hit the reply button and inadvertantly was
UNsubscribing from the list! Boy, was I in a panic. Thankfully, Sarah
has put up a link at her site to our new address. Thank you Sarah!!
Now, back to my message............thank you thank you thank you Steve
for all of your behind the scenes work in getting our support group back
on line. It is appreciated far more than you know! As far as the
advertising goes on the bottom of our messages, it's not a problem.
However, when I was madly scrambling through the onelist home page
trying to find our group I was immediately greeted by the list of all of
their support groups.....from sex to everything else! I then remembered
that Sarah had put up a link on her site. Whew!!
Anyways, it's nice to be back (again!)
take care,
Connie

So pleased to have you all back in our lives again we have really missed you,
our computer crashed at Christmas, and only got it back a few days ago so we
didn't know what was going on.
Well Dave is in a very bad way, the arthritis is attacking the tendons in his
ankle and he has been bed ridden since New Year he is depressed and the doctor
wants to give him a hit of 200mls of prednisone and put him back on
antidepressants, he has refused them as yet and gone back on the weekly dose of
clindamycin hoping that this will help him. Does anyone have any suggestions, he
is getting to the end of his tether and thinks he will never get out of bed
again.
Hope you have all had a better start to the new year......LINDA

Hi everyone,
just wanted to say I have missed you!
Sherry

Wow!!!! Just happened to go to deejay email - acutally to find Sarah's
picture site URL.
It said - "checking for new messages" I said to myself ----"There won't be
any new messages... hmmmmmmm the best part of this day for me . Sending
my love to you all. Judy

Dear Group:
Last month I took a copy of Dr W. C. Douglas's article on breathing oxygen
with exercise to my MD who gave me a prescription to try it. It involves
breathing oxygen at the rate of 6 liters per minute while exercising for 15
minutes. In a few days, at 2 sessions per day, I experienced less fatigue,
more energy, less pain, more strength and a sense of well-being. In 3 weeks I
had a 20% improvement in arthritis symptoms, and still counting. Exercising
with oxygen results in a significant uptake of healing oxygen in the body.
This should speed up antibiotic protocol results because infection can not
survive a high oxygen environment. SAFETY============================ "Oxygen
therapy does not cause any harm to your lungs or your body, if used as
prescribed. You will not develop an addiction to oxygen. Oxygen therapy is
very safe and the only thing you need to remember about safety is to keep your
face and your oxygen away from flames. Talk with your health care provider if
you have specific safety concerns." COST============================== $65 per
month to rent a portable oxygen unit including all tank
refils.

<HTML
yeah!!! We are a group again</HTML

Great....now we can throw this question into the group again.
Donna

Do the new members still subscribe via the www.rheumatic.org website or do
they go to onelist?
I have a couple of gals here that want to subscribe.
xoxo
Donna
Ottawa, Canada
Scleroderma, Raynaud's 4 yrs, AP 15 months
(My Story) www.compmore.net/~donray

YYYYYAAAA HOOOOOOO
We're back. Geezzzzz I got a lot done around here while we were down.
Maybe we'll have a problem in the spring and I'll get that cleaning done
for a change.
Great to be back.
Donna
Ottawa, Canada
Scleroderma, Raynaud's 4 yrs, AP 15 months
(My Story) www.compmore.net/~donray

Just testing it out. I see no problem with it like it is. Denise's list on
onelist doesnt have any advertising that I have noticed
Sarah
--
Clark Signs:
http://members.xoom.com/sclark/
AP Support Group:
http://www.geocities.com/SoHo/Gallery/6412/
Lots of arthritis and health links:
http://www.geocities.com/SoHo/Gallery/6412/supportlinks.htm