--- In StillsNet@yahoogroups.com, TSmetham30gas@... wrote:
>
> HI TO ALL   MY NAME IS PAUL    ( UK )
> I WAS FINALLY  DIAGONISED  IN JUNE  1999 .
>
> I HAD MY FIRST EPISODE    IN MAY  1987  AFTER TEST  AFTER TEST
WAS TOLD I
> WAS MAYBE BITTEN  BY A FLY ?? OR SOMETHING PUT  UP WITH  NO
ENERGY  AND RASHES
> FOR 4 YEARS  NO  MEDICATION  .
> THE RASHES  WENT AWAY FOR  8 YEARS , I THEN HAD A 24 HR WARNING
SIGN IE A
> RASH AND I  THEN  COULD NOT MOVE WITHOUT GREAT PAIN .
> COULD NOT EAT , VERY HIGH FEVER ETC .
> TAKEN INTO HOSPITAL    MOST OF YOU THEN KNOW THE   TIME'S AND
TEST'S THAT ARE
> THEN CARRIED OUT  AFTER 4 WEEK'S  I WAS  THEN TOLD I HAD THIS
RARE  DISEASE
> STILLS .
> I WAS PLACED ON  METHOTREXATE    BEEN OK FOR 7 YEARS  NOW AND DOWN
TO A LOW
> DOSE OF  5 mg  A WEEK .
> THE DOCTOR DID SAY THAT  NOTHING IS KNOWN  ABOUT THE  DISEASE  .
> I HAVE TRIED TO THINK  BACK TO WHAT HAPPENED
> MY PERSONAL  HISTORY     IN  MARCH  1987  I CAUGHT  CHICKEN POX
AFTER
> CATCHING NOTHING AS A CHILD  AND  HAVE BEEN TOLD THAT  SOMETHING
LIKE THIS CAN
> TRIGGER  THING'S  OFF .
>
> I HAVE ALSO BEEN TOLD AS YOU GET OLDER  AND ANOTHER  FLARE UP
HAPPEN'S YOUR
> BODY WILL FIND IT HARDER TO FIGHT  , HAS ANYBODY HAD ANY  PROBLEMS
ALONG THESE
> LINES .
>
> I TRY NOT TO THINK ABOUT IT TO MUCH /// BUT IT IS ALWAYS IN THE
BACK OF  YOUR
> MIND
>
>
> YOURS     PAUL     S
>
> THE
>
>
> [Non-text portions of this message have been removed]
>
Hi Paul.  I know how you feel honey.  I had been in pain for 2 yrs
and then last Augest I got measles at the age of 24 and it seemed
afer that the fever never went away and the pain got worse and the
wbc and fevers went higher.  Was in hospital in June having the
horrible test ran and was just diagnosed the beginning of Sept.

hi sonia
   u may be right
   virus truggers a stills on a genetic back ground
   it may be aqny virus
   but evryone with viral infections do not get this disease
   dr k s anand MD DNB
   consultant rheumatologist'
   pune
   india

sonia1md <sonia1md@...> wrote:
           Hi Paul,

My daughter had the chicken pox vaccine but when she was 7 she
developed a mild case of chicken pox. Three months later she had
her first major systemic flare.

I have also wondered if there was a connection between that virus
and her getting stills disease.

She is now 11 years old and is currently treated with 15 mg. of mtx
every week by injection. She is currently coming out of a flare and
developed GERD due to high doses of Aleve.

She doesn't usually get the high fevers anymore. Just joint/muscle
pain, swollen lymph nodes and blotchy rash.

Hope things go well for you.

Sonia (mom to Aundrea age 11 systemic jra (stills) Gerd)-

-- In StillsNet@yahoogroups.com, TSmetham30gas@... wrote:
>
> HI TO ALL MY NAME IS PAUL ( UK )
> I WAS FINALLY DIAGONISED IN JUNE 1999 .
>
> I HAD MY FIRST EPISODE IN MAY 1987 AFTER TEST AFTER TEST
WAS TOLD I
> WAS MAYBE BITTEN BY A FLY ?? OR SOMETHING PUT UP WITH NO
ENERGY AND RASHES
> FOR 4 YEARS NO MEDICATION .
> THE RASHES WENT AWAY FOR 8 YEARS , I THEN HAD A 24 HR WARNING
SIGN IE A
> RASH AND I THEN COULD NOT MOVE WITHOUT GREAT PAIN .
> COULD NOT EAT , VERY HIGH FEVER ETC .
> TAKEN INTO HOSPITAL MOST OF YOU THEN KNOW THE TIME'S AND
TEST'S THAT ARE
> THEN CARRIED OUT AFTER 4 WEEK'S I WAS THEN TOLD I HAD THIS
RARE DISEASE
> STILLS .
> I WAS PLACED ON METHOTREXATE BEEN OK FOR 7 YEARS NOW AND DOWN
TO A LOW
> DOSE OF 5 mg A WEEK .
> THE DOCTOR DID SAY THAT NOTHING IS KNOWN ABOUT THE DISEASE .
> I HAVE TRIED TO THINK BACK TO WHAT HAPPENED
> MY PERSONAL HISTORY IN MARCH 1987 I CAUGHT CHICKEN POX
AFTER
> CATCHING NOTHING AS A CHILD AND HAVE BEEN TOLD THAT SOMETHING
LIKE THIS CAN
> TRIGGER THING'S OFF .
>
> I HAVE ALSO BEEN TOLD AS YOU GET OLDER AND ANOTHER FLARE UP
HAPPEN'S YOUR
> BODY WILL FIND IT HARDER TO FIGHT , HAS ANYBODY HAD ANY PROBLEMS
ALONG THESE
> LINES .
>
> I TRY NOT TO THINK ABOUT IT TO MUCH /// BUT IT IS ALWAYS IN THE
BACK OF YOUR
> MIND
>
>
> YOURS PAUL S
>
> THE
>
>
> [Non-text portions of this message have been removed]
>






shanmu


---------------------------------
  All new Yahoo! Mail "The new Interface is stunning in its simplicity and ease
of use." - PC Magazine

[Non-text portions of this message have been removed]

You can live with Stills. It will take your down every so often.

I had my first outbreak at age 7 in 1954. Drs. thought I diagnosed
rheumatic fever. Was on penicillin and a brief, unsuccessful treatment
with cortisone. Missed 2 years of school and it went away. Had another
bout when almost 11 for about 9 months. Again, in complete bed rest.
Had anpther bout age 16, still docs were hung up with my purported
enlarged heart and rheumatic fever or worse. Various lymph nodes
removed and was anemic a great deal of the time from constant blood
taking. This bout went away and I only missed half my junior yr of
highschool. Went to college. All I ever took was aspirin for pain
during all of this, execpt for the cortisone early on.

May have had a short outburst then in the late 60s. Moved to
Washington DC for law school and DR noticed my spleen was enlarged,
reviewed my past medical history (in Ohio) and decided I had cancer.
Performed exploratory on belly and removed spleen which I was told was
useless when one was an adult, in 1971. Of course, when the spleen was
removed, it was found to be OK. The medical history made the Drs think
I had an enlarged spleen.

Finally I ran into some drs in New York City who knew about Stills
when I had an outbreak in 1980 (age 32). Although it took a while, and
removal of some lymph nodes and bone marrow, I was put on high doses
of ecotrim (aspirin that dissolves in intestines)--equiv to 18
aspirins a day--and, thus remission. I had another outbreak in late
2000 and this time rheumatologist put me on about 3 days of prednisone
and I am currently taking daily choline magnesium trilisate to keep
salicilate level OK.

Basically, my problem is the loss of the spleen. The spleen fights
pneumonia and other such bacteria. Don't let anybody take your spleen
no matter what they think. It wont help you at all.

Maybe I am lucky with how my Stills goes into remission, but I think
the less medicine you take the better, and if you have GI problems
with aspirin try one of the types that does not dissolve until the
intestines or ask about the stuff I am taking now.  If I had had the
opportunity to take some of the current drugs that are offered, I bet
I would be dead. Better to let the Cheshire cat take over your body
for a while then be dead.

One note on the Chicken Pox. I got it during my bout as a 7 year old
and a couple of the spiked fevers put it away sooner. Does that help.

Hi Paul,

My daughter had the chicken pox vaccine but when she was 7 she
developed a mild case of chicken pox.  Three months later she had
her first major systemic flare.

I have also wondered if there was a connection between that virus
and her getting stills disease.

She is now 11 years old and is currently treated with 15 mg. of mtx
every week by injection.  She is currently coming out of a flare and
developed GERD due to high doses of Aleve.

She doesn't usually get the high fevers anymore.  Just joint/muscle
pain, swollen lymph nodes and blotchy rash.

Hope things go well for you.

Sonia (mom to Aundrea age 11 systemic jra (stills) Gerd)-

-- In StillsNet@yahoogroups.com, TSmetham30gas@... wrote:
>
> HI TO ALL   MY NAME IS PAUL    ( UK )
> I WAS FINALLY  DIAGONISED  IN JUNE  1999 .
>
> I HAD MY FIRST EPISODE    IN MAY  1987  AFTER TEST  AFTER TEST
WAS TOLD I
> WAS MAYBE BITTEN  BY A FLY ?? OR SOMETHING PUT  UP WITH  NO
ENERGY  AND RASHES
> FOR 4 YEARS  NO  MEDICATION  .
> THE RASHES  WENT AWAY FOR  8 YEARS , I THEN HAD A 24 HR WARNING
SIGN IE A
> RASH AND I  THEN  COULD NOT MOVE WITHOUT GREAT PAIN .
> COULD NOT EAT , VERY HIGH FEVER ETC .
> TAKEN INTO HOSPITAL    MOST OF YOU THEN KNOW THE   TIME'S AND
TEST'S THAT ARE
> THEN CARRIED OUT  AFTER 4 WEEK'S  I WAS  THEN TOLD I HAD THIS
RARE  DISEASE
> STILLS .
> I WAS PLACED ON  METHOTREXATE    BEEN OK FOR 7 YEARS  NOW AND DOWN
TO A LOW
> DOSE OF  5 mg  A WEEK .
> THE DOCTOR DID SAY THAT  NOTHING IS KNOWN  ABOUT THE  DISEASE  .
> I HAVE TRIED TO THINK  BACK TO WHAT HAPPENED
> MY PERSONAL  HISTORY     IN  MARCH  1987  I CAUGHT  CHICKEN POX
AFTER
> CATCHING NOTHING AS A CHILD  AND  HAVE BEEN TOLD THAT  SOMETHING
LIKE THIS CAN
> TRIGGER  THING'S  OFF .
>
> I HAVE ALSO BEEN TOLD AS YOU GET OLDER  AND ANOTHER  FLARE UP
HAPPEN'S YOUR
> BODY WILL FIND IT HARDER TO FIGHT  , HAS ANYBODY HAD ANY  PROBLEMS
ALONG THESE
> LINES .
>
> I TRY NOT TO THINK ABOUT IT TO MUCH /// BUT IT IS ALWAYS IN THE
BACK OF  YOUR
> MIND
>
>
> YOURS     PAUL     S
>
> THE
>
>
> [Non-text portions of this message have been removed]
>

--- In StillsNet@yahoogroups.com, "yvonne" <rn742003@...> wrote:
>
> --- In StillsNet@yahoogroups.com, "kevscuttie24" <kevscuttie24@>
> wrote:
> >
> > I my name is RaiAn and I was diagnosed yesterday with Still's
> Disease
> > after suffering for 3 years with it and being put through
horrible
> > test like bone marrow biopsys and spinal taps.  I found this
group
> and
> > wanted to join to get support and to also give support.
> >
>
>
>
> Hi RaiAn, my name is Yvonne. I have a 14y/o son who was diagnosed
with
> Still's at the age of 2yrs. Just wanted to say hi and welcome to
the
> group.!!
>Hi Yvonne.  At 2 the poor baby

--- In StillsNet@yahoogroups.com, Arthurnator@... wrote:
>
> In a message dated 9/26/06 12:18:05 AM Central Daylight Time,
> kevscuttie24@... writes:
>
>
> > RaiAn,
> >     I'm so glad you finaly got a diagnoses after 3yrs and
treatment can
> > finaly begin.
> > I bawled like a baby on my 18th b-day because I was no longer a
child and if
> > I got realy,realy sick no one would care or atleast think it was
as
> > important.
> > Stills disease is a pediatric disease and my now 8yr old son got
diagnosed
> > at 2 just 21 days after the very first symptom.
> > Due to the whole 6 week continuous symptoms criteria we had to
fight a bit,
> > but being such a young little guy the pediatricians fought like
crazy to get
> > him into a ped rheumy.Our Dr.actualy cried with us and begged us
not to take
> > him to the ER, due to the tests you have gone through.
> > I hope you have quick results with the meds and start feeling
better soon.
> > Hugs
> > Becki and David 8 systemic JRA
>
> Thanks, it is harder being an adult and being diagnosed because
they don't think of looking for it at first.  I see the Dr to start
treatment on the 4th of October.  The other complication is I am a
diabetic and steroids and diabetes don't do well together
>
>
> [Non-text portions of this message have been removed]
>

--- In StillsNet@yahoogroups.com, "tomatoesrus" <ddamann41@...>
wrote:
>
>
> Hi,
>
> Just read posts from men and women who have recently beeen
diagonised
> with Stills Disease.
>
> I was diagonised in 1989 after months and months of tests and 2
weeks in
> a hospital.  I do believe there is hope for all.  After several
years of
> recurring episodes, I seem to be in remission. Some joint pain and
a
> rash whenever I take a bath or am exposed to the sun.
>
> No medication now except for Paxil for depression.  After an
arthritis
> doctor made the diagonsis and after no medication helped, she
suggested
> Gold Shots.  Since they were considered experimental, insurance
would
> not pay for any of the shots. Very expensive, but I think they
worked.
> After about 6 months of the shots, my symptons mostly went away.
>
> I am not suggesting Gold Shots for anyone else, but am just
telling what
> happened to me. I wish you all well and hope that this
misunderstood
> disease will be cured some day. You are all so brave to tell your
> stories.  Thanks for sharing.
>
> Diana Amann

I am open to many suggestions and remedies.  I am so tired of taking
all the pain medicine that just adds to the already horrible fatigue
I have.  I will have to look into the shots
>

HI TO ALL   MY NAME IS PAUL    ( UK )
I WAS FINALLY  DIAGONISED  IN JUNE  1999 .

I HAD MY FIRST EPISODE    IN MAY  1987  AFTER TEST  AFTER TEST  WAS TOLD I
WAS MAYBE BITTEN  BY A FLY ?? OR SOMETHING PUT  UP WITH  NO ENERGY  AND RASHES
FOR 4 YEARS  NO  MEDICATION  .
THE RASHES  WENT AWAY FOR  8 YEARS , I THEN HAD A 24 HR WARNING  SIGN IE A
RASH AND I  THEN  COULD NOT MOVE WITHOUT GREAT PAIN .
COULD NOT EAT , VERY HIGH FEVER ETC .
TAKEN INTO HOSPITAL    MOST OF YOU THEN KNOW THE   TIME'S AND TEST'S THAT ARE
THEN CARRIED OUT  AFTER 4 WEEK'S  I WAS  THEN TOLD I HAD THIS RARE  DISEASE
STILLS .
I WAS PLACED ON  METHOTREXATE    BEEN OK FOR 7 YEARS  NOW AND DOWN TO A LOW
DOSE OF  5 mg  A WEEK .
THE DOCTOR DID SAY THAT  NOTHING IS KNOWN  ABOUT THE  DISEASE  .
I HAVE TRIED TO THINK  BACK TO WHAT HAPPENED
MY PERSONAL  HISTORY     IN  MARCH  1987  I CAUGHT  CHICKEN POX  AFTER
CATCHING NOTHING AS A CHILD  AND  HAVE BEEN TOLD THAT  SOMETHING LIKE THIS CAN
TRIGGER  THING'S  OFF .

I HAVE ALSO BEEN TOLD AS YOU GET OLDER  AND ANOTHER  FLARE UP  HAPPEN'S YOUR
BODY WILL FIND IT HARDER TO FIGHT  , HAS ANYBODY HAD ANY  PROBLEMS ALONG THESE
LINES .

I TRY NOT TO THINK ABOUT IT TO MUCH /// BUT IT IS ALWAYS IN THE BACK OF  YOUR
MIND


YOURS     PAUL     S

THE


[Non-text portions of this message have been removed]

In a message dated 9/26/06 12:18:05 AM Central Daylight Time,
kevscuttie24@... writes:


> RaiAn,
>     I'm so glad you finaly got a diagnoses after 3yrs and treatment can
> finaly begin.
> I bawled like a baby on my 18th b-day because I was no longer a child and if
> I got realy,realy sick no one would care or atleast think it was as
> important.
> Stills disease is a pediatric disease and my now 8yr old son got diagnosed
> at 2 just 21 days after the very first symptom.
> Due to the whole 6 week continuous symptoms criteria we had to fight a bit,
> but being such a young little guy the pediatricians fought like crazy to get
> him into a ped rheumy.Our Dr.actualy cried with us and begged us not to take
> him to the ER, due to the tests you have gone through.
> I hope you have quick results with the meds and start feeling better soon.
> Hugs
> Becki and David 8 systemic JRA




[Non-text portions of this message have been removed]

--- In StillsNet@yahoogroups.com, "kevscuttie24" <kevscuttie24@...>
wrote:
>
> I my name is RaiAn and I was diagnosed yesterday with Still's
Disease
> after suffering for 3 years with it and being put through horrible
> test like bone marrow biopsys and spinal taps.  I found this group
and
> wanted to join to get support and to also give support.
>



Hi RaiAn, my name is Yvonne. I have a 14y/o son who was diagnosed with
Still's at the age of 2yrs. Just wanted to say hi and welcome to the
group.!!

Hi,

Just read posts from men and women who have recently beeen diagonised
with Stills Disease.

I was diagonised in 1989 after months and months of tests and 2 weeks in
a hospital.  I do believe there is hope for all.  After several years of
recurring episodes, I seem to be in remission. Some joint pain and a
rash whenever I take a bath or am exposed to the sun.

No medication now except for Paxil for depression.  After an arthritis
doctor made the diagonsis and after no medication helped, she suggested
Gold Shots.  Since they were considered experimental, insurance would
not pay for any of the shots. Very expensive, but I think they worked.
After about 6 months of the shots, my symptons mostly went away.

I am not suggesting Gold Shots for anyone else, but am just telling what
happened to me. I wish you all well and hope that this misunderstood
disease will be cured some day. You are all so brave to tell your
stories.  Thanks for sharing.

Diana Amann

Hey there. I'm Tom and I'm a newbie with Still's. Just wanted to say
hello to the group.

Hope everyone has a great weekend.

Tom

I my name is RaiAn and I was diagnosed yesterday with Still's Disease
after suffering for 3 years with it and being put through horrible
test like bone marrow biopsys and spinal taps.  I found this group and
wanted to join to get support and to also give support.

We would like to remind you of this upcoming event.

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