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Still's Disease and my frustration to return to normal.

My name is Alan and I live in South Central Wisconsin. On April 10th 2006 I went

to work with a small sore throat. By the time the day was over I was getting a

fever and could barely speak. My throat felt like I had a catus stuck in the

center. It was easer to spit than to swallow.That evening was bad . I had a

fever and could barely speak. My wife took me to the hospital. I wound up in

intenseve care for a week. Blood test after Blood test nothing comming up. MRI

scans, CT scans, chest pain, weak, loosing a pound of weight per day,heart tests

, more ct scans, and the shakes like I have never had. It was like a fish out of

water on the ice flopping around. Finally the Dr came up with the Influenza type

" A " . After a couple of days I was starting to get better and was released from

the hospital , a total reck, but doing somewhat better.

After comming home and going back to bed, later on that evening, something was

starting to take hold of me again. I still could not speek with a normal voice.

The catus throat feeling was back this time even worse. The next day I was

really in bad shape. I called up the Doctor and after the clinic review , I was

on my way back to the hospital sicker than before, mostly shaking intermittently

for about an hour, then getting the sweats so bad the beding had to be changed.

One thing that was consistant ,the white cell count was 24,000. Pneumonia was

the diagnosis, and after a couple of days I was released to go home.

That night, again, the shakes to beat the band. I was feeling so cold and just

shaking so bad, even with four heavy blankets on me. Shaking so bad you would

have thought I was having some sort of eplictic fit, but not so, I could speak,

I knew where I was and could even watch TV while I was shaking. The shaking

would last for about an hour and a half. After the shakes would stop then I

would start a fever. The fever would climb to a hundred and two in no time flat,

then break. I would sweating so bad my clothes would need to be rung out. I

would be dripping wet and feeling hotter than one could stand. This went on

every three hours, shakes with feeling very cold, fever and shakes, break with

the sweats. Repeating till I hit a hundred and five body tempture. My wife took

me to the hospital again. This time I was there for another five days with Blood

test after blood test, CT scans,throat test, scopes put every wherethey could

enter, the works. Nothing positive! except the white cell count was at 28,000

again. Then out of the blue, my knee swelled up like it was broken. The

rheumatoligest was sent in to test and evaluate me. He drew off the excess water

from the knee and made test. Knothing in the blood test except the white count

was extremly high. Bone marrow samples and test for cancer was made. The

oncologlist found a small identifiable rash on my back that was consistent with

the Still's Disease.

The next thing I knew I was taking 30mg of predisone. The shakes stoped dead in

the tracks. I was released with check up due in three weeks with rheumatoligy .

About a week later the shakes started up again, I was increased to 50mg of

predisone and back under control for another week. The shakes started up again

and this time methotriexate was added once a week at the rate of seven 5 mg

pills at one wack. The shakes were under control for another month.

By this time I'm a walking " sombi " . I was getting ready for work every day to

keep my self esteem. Getting ready for work was next to impossible. I could

barly lift my legs, I needed help getting up, I would look at my shoes to tie

them and a hour would pass by before I knew it. I mean to tell you it was

frustrating for me. I was sitting unable to particapate in nothing but watching

TV. I found I liked the food channel the best. I could not eat, everything

tasted like what wet cardboard smells like, just gross.

Early July the inside of my lower left jaw started to show bone , not a good

feeling . The bone was projecting out, punching it's way through the skin. This

was a side effect from one of the meds. I went to the doctor for advice and was

told to see the Dentist. The Dentist told me to see a Oral Surgeon. The Oral

Surgeon said I was in luck, he had seen this before. He prescribed some mouth

wash (Chlorhexidine Gluconate) and 6 weeks later the problem was gone. The skin

healed over after some bone spikes were easly removed with hemostats.

I thought I was doing ok till a month later, still off work on short term about

week 14, and the shakes start up again! Fever, Sweets, the whole routine again

even while on the medication. My Rumatoligest added daily Kineret shots to the

medication list as well as changing the dose of the methotriexate to shot form

at 1.2ml once a week. Finally I was under control again. That was good till my

leg swelled up like a dead deer belly and made me very concerned. Back to the

hospital and this time I have a blood clot in my leg. A Blood thinner medication

was added to the daily drug bin and the swelling went down to this day.

It is now November 22, I am on long term disability. I have to re-apply for my

job of twenty two years when I get a back to work ok. There is no guarantee that

they will alow me to return to employment with them. The days go by and I still

get ready for work each day. The amount of predisone I take now is 5mg per day.

I'm still on the blood thiners and I hate bumping against anything, it causes

bruses.The brusing takes about a week to heal. I take a Kineret shot every day.

Once a week I take a shot of methotriexate 1.2ml. I take Boneva once a month and

have been doing so sence the start of the predisone. I take folic acid every

day. I am able to get up on my own with out help for about a month and a half

now. I still feel a low level of shaking going on, but as the predisone is cut

the shaking tends to decrease. I have night sweats, but, it is limited to the

pillow case and really not as bad as the whole bed being wet like it would get

back in June. My leg blood clot swelling is doing better and due for a follow up

ultrasound. I can walk around the lumber yard and look for the wish list stuff

without getting the shakes half way through. In the past the shakes would hit me

and scare the living crap out of people near me. I have not had happen for two

months now.

I'm due to see the Doctor on the 28th of November 2006. I hope we can stop the

predisone and start droping the methotriexate dose. It is my understanding the

Kineret will be my maitenance drug.

November 29, 2006. Stills disease is still active! The rumatoligest does not

want to lower any meds at this time. I have been having some problems with my

voice the past day. This morning I woke up with a small low level shaking and

finger tingle. I have another appointment on December 28. If things take a turn

for the worst I'll have to see him earlier.

The above information is a small highlight what I have encountered with the

Stills Disease over the past 7 months. I am 56 years old and still have a lot of

fight left in me. I look forward to attempt return to work. I miss the job and

the life style. I hope this information helps you to understand the process of

overcomming Stills Disease , or maybe coping with it, and its' required

matenance drug. This will help you see the light at the end of the tunnel. The

best advice I can give is not to rush the medication and its' dose levels. If

you mess with the dose levels without the doctor telling you when, you will

stand a chance of having a relaps and have to start all over again.

Good Luck, Alan