Can you give a link for the international Psoriasis site?



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From: Shirley Duval [mailto:shenry_123@...]
Sent: Saturday, April 02, 2005 11:06 AM
To: Psoriatic-Arthritis@yahoogroups.com
Subject: Re: [Psoriatic-Arthritis] Newbie here



VIVIAN,
JUST BECAUSE THE EMBREL PEOPLE SAY DIARHEA DOES NOT HAPPEN WITH EMBREL
USERS, DOES NOT MEAN MUCH. ANY MED, AS YOU KNOW, CAN CAUSE DIARHEA. ALSO,
WITH AUTOIMMUNE DISORDERS, IBS IS PRETTY COMMON. I JUST DEVELOPED THAT
WITHIN THE LAST YEAR. INTERESTING THAT THE COLON CAN BE EFFECTED, BUT NOT
SURPRISING. I THINK THERE IS WAY TOO MUCH THEY DON'T KNOW ABOUT PA AND
PSORIASIS. I JUST CAME FROM THE INTERNATIONAL PSORIASIS SITE AND THEY
MENTION SEVERAL THINGS ABOUT PA AND PSORIASIS THAT IS NOT ON OTHER SITES,
SUCH AS DEATHS FROM THIS AUTOIMMUNE DISORDER EVERY YEAR. HOPE YOUR TX WORKS
FOR THE ARTHRITIC COLON.
SHIRLEY

Vivian Hooton <vivianhooton@...> wrote:
Here is another situation which I am experiencing. I have never been dx
with PA. I was hit by a car doing 50 miles an hour while I was seated on a
bench and then developed OA. I have had severe psoriasis since the age of
13, more than 50 yrs now. My dermatologist put me on Enbrel for the
Psoriasis. I had immediate relief of psoriasis and any arthritic sysptoms.
I had one complication from the Enbrel. It was severe, explosive diarrhea.
Repeatedly the Enbrel people say that doesn't happen. I can correlate the
bouts with the medication dosage. If I take Enbrel at night the problem is
less and can be controlled with Imodium. Everything was wonderful for 2
years until I got an upper respiratory infection and had to stop the Enbrel.
Unfortunately the diarrhea did NOT stop. It turns out there can be arthritic
changes to your colon. I work in the hospital lab so the Pathologist
reviewed the biopsy with me. He explained the changes you would see if
auto-immune arthritic changes happen
in the bowel. The GI doc said there were two different treatments if the
biopsy was arthritis versus if the biopsy was normal. Now I know which
treatment I will start.

Shirley Duval <shenry_123@...> wrote:HI CATHY,
I HAVE NEVER HEARD PA DESCRIBED SO WELL. I HAD TO LAUGH WHEN YOU SAID WHERE
IS WALDO. YOU HAVE A TOUGH JOB. HOW DO YOU DO IT WITH THE PAIN?

I WAS DXD WITH PA ON JULY 1, 1998. I HAD HAD IT FOR YEARS, BUT IT REALLY
EXACERBATED IN MAY OF 98. AFTER BEING DXD I REALIZED DOCS KNEW VERY LITTLE
ABOUT THIS WIERD ARTHRITIS SO I GOT AN INTERNET PLAN AND WENT SEARCHING.
NEEDLESS TO SAY, THERE WAS NOT A LOT OF INFO ON THE NET AT THAT TIME, BUT IN
THE PAST 6 YEARS THE INFO HAS INCREASED BY ABOUT 500 PER CENT. HAVE YOU DONE
MUCH RESEARCH? BEING A NURSE, YOU WILL UNDERSTAND MORE OF WHAT THEY HAVE TO
SAY ON THE DIFFERENT SITES THAN MOST OF US.

WHILE PA MOVES AROUND, IT EVENTUALLY CAN SETTLE IN SOME JOINTS AND JUST HANG
ON THERE FOREVER. MY KNEES AND BACK(PARTICULARLY SACROILIAC) HURT ALL THE
TIME NOW. MY KNEES HAVE SWOLLEN TO THE POINT I HAD TO HAVE THEM DRAINED.
HAS HAPPENED 4 TIMES NOW. HURTS SO BAD YOU DON'T CARE IF THEY HAVE TO STICK
A NEEDLE IN YOUR KNEWW. IT IS LIKE AN IV AS THEY DO NOT LEAVE THE NEEDLE
IN. THEN YOU GET A SHOT OF CORTISONE. IT IS INSTANT RELIEF. STILL SORE,
BUT THE TERRIBLE PAIN IS GONE. I HAVE TAKEN PREDPACKS BEFORE, BUT IT HAS
BEEN A LONG TIME. I LIKE THE IM STEROID SHOT AS THERE IS NOT A LIFETIME
NUMBER ON THESE AND THEY DO HELP. PAIN SO BAD FIRST TIME I GOT THIS SHOT, I
DID NOT EVEN FEEL THE NEEDLE.

DO YOU HAVE A LOT OF PSORIASIS? THE ITCHING DRIVES ME NUTS. SOMETIMES I
THINK IT IS AS BAD IF NOT WORSE THAN THE PAIN. I HAVE WOKEN UP IN THE
MORNING WITH BLOODLY FINGERS FROM WHERE I SCRATCHED IN MY SLEEP. OH SO
ATTRACTIVE.

THIS STUFF IS REALLY MORE DANGEROUS THAN DOCS TELL YOU. IT IS SYSTEMIC LIKE
LUPUS AS IT CAN EFFECT OTHER ORGANS. I HAVE IRITIS IN BOTH EYES FROM THE
PA. HAVE HAD IT OFF AND ON FOR ABOUT 7 YEARS. MY SISTER AND NEICE BOTH
HAVE IT ALSO. THEY HAVE PERMANENT DAMAGE IN ONE EYE FROM THE IRITIS-PUPIL
NO LONGER RESPONDS TO LIGHT. MY SISTER IS LEGALLY BLIND IN THAT EYE FROM
THE IRITIS. IT CAN ALSO EFFECT OTHER ORGANS SUCH AS THE HEART. DON'T MEAN
TO SCARE YOU, JUST LETTING YOU KNOW SO YOU CAN PROTECT YOURSELF. WHEN I HAD
MY FIRST BOUT WITH IRITIS I HAD NO PAIN, JUST VERY SENSITIVE TO LIGHT AND
ALL OF A SUDDEN I WAS ACUTELY AWARE I HAD THIS LEFT EYE. ONLY WAY TO
EXPLAIN IT. GUESS THIS WAS THE INFLAMMATION. WHILE I ONLY NOTICES LEFT
EYE, I HAD IT IN BOTH EYES. WAS GIVEN PREDFORTE BY THE OPHTHALMOLOGIST.
EVERYONE I KNOW WHO HAS HAD IRITIS HAS HAD THIS PROTOCOL USED. CHECK IRITIS
OUT ON THE INTERNET.

ANOTHER SCAREY THING - SURGERY. I HAD SURGERY FOR A ROUTINE HYSTERECTOMY IN
2003. THIS WAS ON THE 9TH, ON THE 17TH I WAS BACK IN THE ER WAITING TO SEE
A SURGEON AS I HAD GANGRENE AND NECROTIZING FASCIITIS OF THE ABDOMEN AS WELL
AS BEING SEPTIC. SURGEON, WHO IS A FIRST CLASS DOC, TOLD MY HUSBAND HE DID
NOT KNOW IF HE COULD SAVE ME. WELL, OBVIOUSLY HE DID SINCE I AM SENDING YOU
THIS EMAIL. LOST ALL MUSCLE ON RIGHT SIDE OF ABDOMEN. HAD HOME HEALTH CARE
WITH WOUND VAC AS THEY COULD NOT CLOSE THE INCISION. COULD STICK YOUR FIST
IN RIGHT SIDE OF ABDOMEN AND YOUR HAND UP PAST YOUR FINGERS FROM SURGICAL
SITE UPWARDS TOWARDS DIAPHRAGM. ENDED UP WITH HERNIA SIZE OF SOCCOR BALL
AND WENT BACK FOR SURGERY IN JULY OF 04. LEFT ME OPEN AGAIN FOR FEAR OF A
REPEAT OF LAST TIME. HAD DEEP WOUNDS AND ONCE AGAIN I WAS ON THE WOUND VAC.
NEEDLESS TO SAY, MY ABDOMEN IS DEFORMED. THE OB/GYN WHO DID THE
HYSTERECTOMY WAS A QUACK. WITH THE GANGRENE, I SMELLED TERRIBLE AND BROWN
PUS OOZED FROM ME.
HE TOOK HIS FINGER AND RIPPED OPEN THE SURGICAL SITE IN HIS OFFICE. KEPT
SCOOPING OUT ALL THIS BROWN NASTY STUFF FROM MY ABDOMEN. GAVE MY HUSBAND
NON STERILE GAUZE AND GLOVES AND TOLD HIM TO SOAK GAUZE WITH PEROXIDE AND
PACK ME WITH THIS. I BECAME PSYCHOTIC DUE TO THE SEPSIS. TALKED CRAZY
STUFF. THE NEXT DAY MY HUSBAND TOOK ME BACK TO THIS QUACK WHO CLEANED THE
BROWN STUFF OUT, WROTE RX FOR ERYTHROMYCIN AND WAS GOING TO SEND ME HOME.
THIS WAS A FRIDAY AND I WAS TO RETURN ON MONDAY. MY HUSBAND PULLED HIM OUT
OF THE EXAM ROOM AND TOLD HIM HE KNEW GANGRENE WHEN HE SAW IT AND SMELLED IT
AND I HAD GANGRENE. DOC RELUTANTLY CALLED OUR FAMILY SURGEON. HAD MY
HUSBAND NOT RECOGNIZED WHAT WAS WRONG, I WOULD HAVE DIED. I WOULD NOT HAVE
MADE IT THROUGH THE WEEKEND.

NOW, YOU MIGHT ASK, WHAT DOES THIS HAVE TO DO WITH PSORIASIS. STREP AND
OTHER GERMS, AS I AM SURE YOU KNOW, LIVE ON THE SKIN AND DO US NO HARM. BUT
WHAT HAPPENS WHEN FLAKES GET IN SURGICAL WOUNDS. I AM CONVINCED A
PSORIATICS SKIN IS MORE INVOLVED THAN JUST WHERE THE OBVIOUS PSORIASIS IS.
I SAY THIS BECAUSE IF YOU TAKE AN EMERY BOARD AND RUB IT LIGHTLY ON OTHER
PARTS OF YOUR BODY, THE SKIN FLAKES EASILY. NOT SO ON PEOPLE WHO DO NOT
HAVE PSORIASIS. PLUS, WHERE YOU HAVE WOUNDS OF ANY KIND YOU CAN DEVELOP
PSORIASIS. THERE IS A NAME FOR IT BUT I CAN'T REMEMBER WHAT IT IS. CALLED
________________ PHENOMENON. I GUESS WHAT I AM SAYING IS TO BE YOUR OWN
ADVOCATE IF YOU HAVE SURGERY AND WATCH OUT FOR NECROTIC TISSUE WHERE THE
WOUND IS CLOSED. ONLY ONE AREA WHERE A STAPLE WAS SHOWED NECROTIC TISSUE.
THANK GOD FOR THAT THOUGH. MY HUSBAND SAID WHEN HE GAVE ME A SHOWER HE
PUSHED ON THAT AREA AND BROWN PUS JUST OOZED FROM THERE, SAID IT WAS LIKE A
GEYSER. IT ACTUALLY SHOT A STREAM OUT
MY ABDOMEN WHERE THE ONE STAPLE HAD NOT CLOSED THE INCISION DUE TO THE
NECROTIC TISSUE THERE.

I AM SO LUCKY TO BE ALIVE. I KNEW I WAS IN BAD SHAPE. THE SURGEON DID
EMERGENCY SURGERY ON ME. I CAN REMEMBER BEING ON THE TABLE IN THE OPERATING
ROOM AND ALL I COULD THINK OF WAS MY TWO CHILDREN. I THOUGHT, HOW UNFAIR TO
THEM. THEY ARE ADOPTED FROM RUSSIA. HAD ALREADY LOST ONE SET OF PARENTS,
NOW THEY COULD LOSE THEIR MOTHER. FUNNY HOW I WAS NOT AFRAID TO DIE BUT
JUST KEPT THINKING ABOUT THEM. GOD MUST HAVE LISTENED TO ME. FOR SEVERAL
DAYS, THE SURGEON SAID I WAS NOT OUT OF THE WOODS. THEY BLASTED ME WITH IV
ANTIBIOTICS AND KEPT THE SITE CLEAN WITH A CLOROX SOLUTION. I WENT HOME
AFTER A WEEK AND WAS FOLLOWED BY HOME HEALTH UNTIL THE END OF JUNE. THE
WOUND VAC WORKS GREAT. WITHOUT IT I WOULD HAVE BEEN MONTHS HEALING WITH
HOME HEALTH COMING TWICE DAILY TO CHANGE THE WOUND DRESSING.

I TRIED TO SUE THE SOB BUT GOT NO WHERE AS HE HAD PUT IN HIS NOTES IT WAS
HIS IDEA TO CALL THE SURGEON. EVEN THOUGH I KEPT THE RX FOR ERYTHROMYCIN HE
HAD GIVEN ME THAT DAY WHICH I THOUGHT PROVED HE WAS GOING TO SEND ME HOME.
WHY WOULD YOU GIVE SOMEONE AN ANTIBIOTIC RX IF YOU WERE SENDING THEM TO THE
ER TO SEE A SURGEON AND WHY WOULD YOU PRESCRIBE ERYTHROMYCIN FOR GANGRENE.
I HAVE BEEN THROUGH HELL THE PAST TWO YEARS AND I JUST HAVE TO LIVE WITH IT.
NO COMPENSATION, NO NOTHING. IT IS EXTREMELY HARD TO SUE A DOC IN VA. THE
DIMWIT CLOSED HIS OFFICE IN MAY, 2003 AND TOOK A POSITION WITH THE VETERAN'S
HOSPITAL IN THIS AREA. IS HEAD OF WOMEN'S CARE FOR OUR VETERANS. MAKES ME
SICK. THE ONLY THING I CAN DO IS MAKE A COMPLAINT TO THE VA LICENSING
BOARD. HE HAS ALREADY HAD ONE COMPLAINT WHERE HE WAS SANCTIONED. THERE ARE
OTHERS HE MESSED UP TOO. HOPEFULLY HE WILL LOSE HIS LICENSE. HE WAS ONLY
IN VA FOR A YEAR AND THERE ARE MULTIPLE SUITS AGAINST HIM.

SORRY BOUT THE LONG EMAIL, BUT I THOUGHT YOU MIGHT WANT TO KNOW. THE ONLY
WAY WE CAN PROTECT OURSELVES IS THROUGH KNOWLEDGE. I DON'T HAVE MUCH FAITH
IN DOCTORS ANYMORE. ESPECIALLY SINCE THE NEUROSURGEON WHO HAD PERFORMED
SURGERY ON MY HUSBAND'S NECK TOOK OUT A GOOD DISC AND LEFT THE BAD ONE
THERE. HE HAS PERMANENT NERVE DAMAGE IN BOTH ARMS AND HANDS. COULDN'T SUE
HIM EITHER AS HE LISTED DOUG ON HIS BANKRUPTCY EVEN THOUGH DOUG HAD NEVER
BEEN AWARDED ANYTHING. HAVE BEEN TOLD BY SEVERAL LAWYERS HE COULD NOT DO
THIS BUT APPARENTLY OUR LAWYER THOUGHT HE COULD.

OH WELL, NO WONDER I AM NUTS. GLAD I WAS A CLINICAL THERAPIST SO I
RECOGNIZE THE SIGNS.

HOPE YOU DO WELL WITH WHATEVER TX THEY GIVE YOU. HOPE TO HEAR FROM YOU.

HUGS,
SHIRLEY IN PORTSMOUTH, VA - NEAR VA BEACH

Cathy <tiggertown@...> wrote:

Hi all.
I was diagnosed last year, and have been doing ok till about a month
ago. One day I got very stiff and painful all over, was put on
steroids for a week and did great.
Last night I woke up with arm pain and tonight have severe stiffness
in that hand.
What a weird disease..............kind of like where's
waldo........never know what or where it will pop up.
Look forward to meeting you all here.
I am an RN in gastroenterology.

Cathy





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