Connie Hart

 

 

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.

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Connie Hart
Harley09534@aol.com

 

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