Hello everyone

June 16, 2003

Hey ,

Welcome to the group

I have only been on the prednisone for about a month now so I can't help you

there, but I have had major sleep problems for 2 years and I have always

slept like a bear my entire life. They put me on Trazodone first and that

worked for about a year, tried amitriptyline and flexoril and they made me

feel severely depressed and groggy. Ambien works great but my doc won't

give me much. When my pain is under better control I seem to sleep better.

They have told me to just use tylenol pm now and that does work pretty well.

As far as activities go, right now I am limited to 10 minutes. I try to

walk for 10 minutes a day. Have you been to physical therapy? They can get

you set up on a program. They have me work with 2 lb weights and

therabands now. I also do pool therapy twice a week when I can and can be

in the pool for 30-40 minutes doing exercise. This is hard as several years

ago I was pretty into weight lifting and could leg press over 200 lbs. Now

I can barely get the top off a bottle.

Will you play basketball agian, anything is possible!!! Since my pain has

continually spread and gotten worse over the past 2 years I am not the most

hopeful but I was never a big athlete either. I miss downhill skiiing the

most. Don't think my knees could handle that right now.

Anyway there are many in the group that are physical miracles, Superman runs

20 miles a day and is in the military, you will have to talk to him when he

gets back.

Glad you are here!

Lynn Renae Dudenhoefer

lynndude@...

-On any path that you may stroll,

-keep your angel in your soul!

-- Re: Hello everyone

Hello,

Fairly new and have not spoken up,

Had a few quick questions though, I have had still's for 6 years now and

have

never been off of prednisone, Has anyone else been on it that long without

some sort of break from it?

Does anyone have trouble with activities such as sports like basketball, or

weight lifting?

should i give up the idea that i will play basketball again?

Do most have trouble sleeping? I wake up about every 15-30 min. every night.

Oh by the way my name is , I am 23 will be 24 next month.

June 16, 2003

Hi

My name is ,I am in Wichita, KS. I also had most of the symptoms you

described at the onset of stills disease. Sorry to here about the un-necessary

operation. When I was given prednizone my fevers immediately went down also. I

have had Stills for 4 yrs now and been a member here for aprox. 2 of those yrs.

My rhuemy here in Wichita is DR. Shaver, Who do you see? I know of 1 other

person here in Wichita that has Stills. As far as the medicines go, for me, some

seem to work for a while. Recently got off MTX and prednizone, doc was concerned

about long term effects. Am now trying Plaquenil, this stuff is hard on my

tummy, lol. I am 47, got stills at 43. I have not posted much the last few

months, but I have been reading all posts.

Take care

rjones202@...

Wichita, Kansas

Hello everyone

Hello everyone. My name is . I am 16 years old. I was diagnosed

with Stills Disease in April. For the past year I had been really sick.

It seemed that every other month I would get sick with flu like symptoms. I

would have extremely high temperatures, vomiting, sore throats, my whole

body would just hurt and ache. One night towards the end of March I was at

work ( I HAD a waitressing job ) and my right side started hurting. It hurt

so bad I couldn't even stand up, or drive home. I had to call my Mom and

make her come get me. Whenever we got home, I went straight to bed. I can

remember laying in bed with five quilts on top of me, crying, thinking to

myself, what was going on. My Mom came in my room at one in the morning,

and said come on, I'm taking you out to the emergency room. She said I had

that gray look to my face and my temperature was now up to 106. Whenever we

got out to the emergency room, they ran some test and took some blood. My

white blood count was extremely high, and since my right side was hurting,

they said it was my appendix and it needed to be removed ASAP. So I had

emergency surgery and my appendix was removed at 8 o'clock that morning.

After the surgery was over, the doctor came in my room and said that the

appendix was fine. But I no longer had the pain in my right side. I still

had a high temperature, and then that next day a faint rash appeared on my

face and arms. My doctor continued to run test, but couldn't figure out

anything. After being in the hospital for 2 days, having an unnecessary

surgery, and still not knowing what was wrong with me, my parents we're a

little bit frusterated. My doctor then decided it was time for me to go to

a bigger hospital 2 1/2 hours away. I was rushed by ambulance to a hospital

in Wichita, Kansas to see an infectious disease specialist. When I got

there he did more test. Another 5 days passed, and we still knew nothing.

I still had 104-106 temperatures, chills, vomiting, and the rash. The

infectious disease specialist came in and said he had done everything he

could, and what I had was not in his field. He said he was going to send a

rheumatologist in. My family and I were like a rheuma.... what?! We had

never even heard of a rheumatologist before. This was all very new to us.

She came in and did more testing. She finally gave me 800mg of prednizone

through my IV. It was like a miracle drug! My temperature was gone, and I

was ready to get the heck out of the hospital. I did a little bit of

whinning around to my rheumatologist and told her that my temperature was

gone, I was 2 1/2 hours away from my friends, I was still in school, and I

just wanted to go home. She said that I could go home, but she explained to

me I was still sick, and the prednizone was just like a band-aid. She also

said she was waiting on a test to come back, and she was pretty sure she

knew what I had. She said that she thought I had something called " Stills

disease " She sent me home on 80mg of prednizone and I had to come back in

one week. Whenever my family and I got home, we did some research on

Stills... and I was shocked. Everything that had been going on the past

year, all pointed back to Stills. It was so crazy! I knew once I did the

research, Stills was what I had. When I went back to see my rheumatologist

one week later, sure enough, she had got the tests back and Still's was what

I had. I am now on 40mg of prednizone, 400mg of plaquinel, 100mg of

trazodone(to help sleep), and tylenol3 for the pain. I am really glad I

found this, reading everyone elses post, It's nice to know there's other

people out there going through some of the same stuff and are willling to

help you with any questions.

Myers

_________________________________________________________________

Add photos to your e-mail with MSN 8. Get 2 months FREE*.

http://join.msn.com/?page=features/featuredemail

June 16, 2003

And a big welcome to you Bill! My nickname is Melt and I've had Stills

since the seventies. As you have probably read, we are a great group of

family here. Join right in and let us know how we can help in any way. I

never say never with this disease because it can change on a dime or be nice

for a very long time, lol. Always keep your dreams and if you can't do the

ones you want for a while then find new ones while you wait. Happy you have

joined us.

Till soon, Melt

Re: Hello everyone

> Hello,

> Fairly new and have not spoken up,

> Had a few quick questions though, I have had still's for 6 years now and

have

> never been off of prednisone, Has anyone else been on it that long without

> some sort of break from it?

> Does anyone have trouble with activities such as sports like basketball,

or

> weight lifting?

> should i give up the idea that i will play basketball again?

> Do most have trouble sleeping? I wake up about every 15-30 min. every

night.

> Oh by the way my name is , I am 23 will be 24 next month.

>

June 16, 2003

Dear Bill,

it is very nice to meet you and I am glad that you wrote to the group. I

have been on the same amount of prednisone for over three years. I haven't

been below 30mg. I started off at 80. This is a lot of time for me. I

want of it very badly. I have noticed big changes in my body as far as

strength go and exercise. I was a faithful runner and worked out on weights

a lot. Yes, I do notice changes...How long have you been on it Bill? I do

have trouble sleeping. I was taking Amptytripylene (spelling)....but I

recently stopped because of all the weight gain with the prednisone. I

have gained 53 pounds with that and prednisone, so I tried Ambien again this

week. That's not working either and he gave me 10mg tabs. Yes, prednisone

makes it hard for me to sleep and makes me moody as well. I am sorry that

you are having a rough time at it too friend. I have kind of been in a

slump the last few months. I know where you are coming from. Be well.

Sincerely, Sue #2

-- Re: Hello everyone

Hello,

Fairly new and have not spoken up,

Had a few quick questions though, I have had still's for 6 years now and

have

never been off of prednisone, Has anyone else been on it that long without

some sort of break from it?

Does anyone have trouble with activities such as sports like basketball, or

weight lifting?

should i give up the idea that i will play basketball again?

Do most have trouble sleeping? I wake up about every 15-30 min. every night.

Oh by the way my name is , I am 23 will be 24 next month.

June 16, 2003

Welcome back RJ!

Good to hear from you again. I have wondered how you have been doing.

So sorry about your dad and then your step dad yet too.

Oh , I got a tear in my eye and a chill down my spine, when I read

that you have found your daughter after *23* years! How wonderful!

That is very strange about being able to walk for several months! Thank

God, it was only temporary, and let's hope it doesn't come back. You

must have been a bit scared.

Thanks for checking in, before we had to send the cavalry out!

~~tricia~~

Wisconsin

*****************************************************************************

**

-- Re: Hello everyone

Hi Caroline

Soooooooo, lol. Yes RJ. I think Pattymelt give me that name because there

were getting to be a lot of then and I see there are more

now. A ton of things have been going on, my dad passed on thanksgiving day,

my step dad in law has passed and on and on. Good news is I found my

daughter after 23 yrs. on Christmas day, her birthday. Her mom and I never

married. She lives in Colorado Springs, Co. same place as In Colorado.

I grew up there my self. Spent the last 5 or 6 months unable to walk till 3

weeks ago. The docs don't have a clue what was wrong, after trying PT,

Acupuncture, traction, epidural shot, MRI pictures nothing helped. Then one

morning I awoke and just stood up like I should, not realizing what I

June 16, 2003

RJ...I meant NOT being able to walk for several months! What

a difference in the meaning of a sentence when one word is

added or deleted.

~~tricia~~

********************************