My name is Connie Hart, I have had SD since 1986. I am currently 32 years old and have a wonderful husband and step daughter. In November of 1986 I began having sore throats and what I thought was flu symptoms. Around thanksgiving of that year my pinky and index fingers were swollen and painfull. I went to the med center and the doctor said I was retaining water and he put me on lasix. Of course that did nothing and I contiued to have the sore throats and swollen and painful fingers. After a couple of months of this i began having a rash at night with fevers of 101-102 then I would have the night sweats. The doctor I was seeing told me there was nothing wrong with me that it was in my head. I had just went thru a very stressful time before all this had started.
By this time it is the summer
of 1987 with no real improvments. I now am having swollen
knees,elbows,fingers,wrists.And I cannot walk,weighing only 90 pounds and my
mother and father have to carry me down the stairs to the doctors office.I go
the an orthopedic doctor because we thought there was something wrong with the
legs he had know idea what was wrong,but he had a Intern who was from a
different country and he felt it was Rheumatoid Rheumatic Fever and I needed to
see an internist. And that is when I found Dr.Allen and was treated with
penicillen shots weekley ,of course I had all the symptoms except for the heart
murmer. I was put on steroids and asprin therapy. That did not help
I continued to get worse. Untill one day I fainted and my mother rushed me
to his office and he walked out looked at me and sent me straight to the
hospital with dehydration,fever,sore throat,severe swollen
joints.I really felt like a guinnea pig because all these interns were coming in
and taking historys poking and prodding. Buy this time I was very agitated
and discouraged. No one knew what was wrong with me.It was now Janurary
1988 and I was crippled,weighed barely nothing and so sick I thought I was going
to die. Dr.Sanders a Rheumatoligist was called in at that time and
started running all these test and doing spinal taps,draining fluid out of the
knees. He did a test for lupus it was negative.WSR was very high,
Rheumatoid factor was negative.and bunch of other tests that were negative.
Finally after 6 days in the hospital he came in with the diagnosis of Adult
Onset Stills Disease. He spent a very long time with me and my mother explaining
what it was and how we were going to treat it. At that time there was very
little information out. He told us it was very rare and that there was
very few documented cases. I was immediatly put on ridura and some other
antiinflaitory and 100 gm twice daily of prednisone.Which of course was very
high but i was not responding to the other meds. Finally in 1989 I was put
on plaqunil and taken off the ridura (gold), and differnet anit inflammatorys
and the high dose steroids. Still no inprovements and in 1990 i agreed to
try the MTX. I was now on 17.5 mg of MTX,plaquneil twice daily and
ansaid
100mg three time daily and the high dose of predinisone.After 6 months there was
improvement and was weaned of the prednisone very very slowley it took a
year to get off and by then i weighed almost 200 pounds and was very moon faced
and had severe mood swings. I finally got of the pred and the MTX was
increased again and I continued to improve to where I could go to work and
live a pretty regular life.The plaquniel was then weaned off. I was
feeling better I had lost most of the pred weight.From 1990 to 1992 my sed rate
was still high but I was feeling better and thought maybe I had beat this thing
altogather. Unfourtually june of 1993 i started having severe knee pain
and a locking joint. It was found that I have severe joint damage and
avascular neucrosis from having this disease out of control from 1988 to 1991.
And of course the avascular neurcrosis is from high dose long term steroid use.
I had my first knee surgury and it was band aid togather as I call it..
But my wsr are normal and I am feeling better but know longer able to work do to
the knee joint damage and the deformity of my hands.I have been in a medication
induced remission since late 1992 and all the problems i have now are
secondary to the stills and are basically from the disease being uncontrollable
and the prednisone.Both my doctors were wonderful and they both tried to help me
in my pain but everything they tried i had reactions to or it didnt help.
As of now 8 knee surguries later I am walking on my own
for the most part some days with the aid of a cane or crutches.My wsr is normal
but I am in the beginnig of a flare which is the first since 1992. I am
now also batteling Iritis of the eyes is very frustrasted to know that I have
damaged my joints and bone but to know a have the eyes effected also is
frustrating. But with the support of my wonderful family and the Still
Group I will over come this obsticale also.
Connie Hart
Harley09534@aol.com