Re: My questions for the future...

[Guest guest]

Hi Hailey,

I was diagnosed with Stills about 3 weeks ago.

How your body reacts to meds will differ from person to person, but here's what

I've had so far...

I've been taking Naproxen. My fevers are gone! The muscle/joint pains were

reduced significantly, but not completely. The rash remained. Fatigue

remained. For me at least, Naproxen helped a good amount, but still not enough.

The wonder drug that my rheumatlogist has had me on for the past week or so is

prednisone. There are pros/cons with it because of side effects, but I guess

i'm on a low enough dose (started at 40mg, now at 30mg) that i have no side

effects so far, and the plan is to eventually wean me off of it because

apparently you can't stay on it long term. The only pains i have now are in my

knees in the early morning and late at night, and even those are only a 2 or 3

on a pain scale of 10. I haven't noticed a rash / itchiness in a couple days,

so looking promising there too. Feeling relatively normal again! Of course,

the big question will be what happens to me as I continue to reduce dosage and

eventually have to stop taking it...but i'll take things one day at a time and

appreciate my health in the meantime.

I THINK i heard something about prednisone not being recommended for young

people (still growing), so maybe that's why your doc hasn't mentioned it. I'm

in my 30s, so no longer considered young Worth a conversation with your doc

at least.

As for job interviews...that's a tough one. I've never had a potential employer

ask if i had illnesses, so them asking you that seems a bit unusual...maybe it

depends on the type of work you're looking for. I'd say don't lie, but also no

need to volunteer info if you're not asked, and no need to go into negative

details. Depending on what you're interviewing for, hopefully you can

enthusiastically follow up with " but it will not adversely effect my performance

on the job! " Whether that will remain the case...who knows, but i'd say when it

comes to job interviews, think optimistically and present yourself in the best

light.

btw, try not to get too frustrated with others' ignorance about Stills. I bet

most of us had no clue about it until we experienced it. Admittedly, that guy

had absolutely no tact, so forget him.

Good luck ahead, hopefully the worst is already behind you!

-Mike

>

> A lot of you are far older then me and understand Stills a whole lot better

then me.

> But I have some questions.

> I am only 17, but what about when I'm ready to have kids, how will that work

out? I mean, it seems hard enough to carry my own 120 pounds of weight around

with all the pain, how will carrying a little one be like?

>

> And does the rash ever really go away? It seems like it mostly goes away and

then comes right back again.

>

> Have any of you guys tried Naproxen? My doctor prescribed it to me yesterday

to help with this relapse.

>

> Have any of you had problems getting jobs? Because I've gone to interviews and

when they ask if I have any illnesses I tell them the truth, 'I have stills

disease' and when they ask me to explain and I do they look at me like I'm crazy

and they never call me. One time I told the interviewer,

>

> 'Yes, I suffer from stills disease'

> He answered with,

> 'What? What is that? That sounds like some kind of std.'

> I just walked out before I had to punch him...

>

>

[Guest guest]

Hi Hailey,

I'm not a MD, but I was diagnosed when I was 12. Symptom free until I was

20 or so, then symptom free again until I was 28, then 36. I'm 49 now, so

I'm past due for another flare, I guess, but I didn't even think about that

until I typed all this.

My advice is not to worry too much. You may well shake this off. There

are a huge number of people who live symptom freee lives. Unfortunately we

don't hear from them very often because they're not hanging out in the

group.

I had two kids, and although I think it was harder for me to get pregnant

than it is for most women, I got pregnant with no fertility treatments. My

first pregnancy was fine, my second one triggered a flare.

Stress is also a trigger though, so learn to manage that without

internalizing it, and you'll be all the better for it.

In Michigan

[Guest guest]

Hi Hailey,

I'm not a MD, but I was diagnosed when I was 12. Symptom free until I was

20 or so, then symptom free again until I was 28, then 36. I'm 49 now, so

I'm past due for another flare, I guess, but I didn't even think about that

until I typed all this.

My advice is not to worry too much. You may well shake this off. There

are a huge number of people who live symptom freee lives. Unfortunately we

don't hear from them very often because they're not hanging out in the

group.

I had two kids, and although I think it was harder for me to get pregnant

than it is for most women, I got pregnant with no fertility treatments. My

first pregnancy was fine, my second one triggered a flare.

Stress is also a trigger though, so learn to manage that without

internalizing it, and you'll be all the better for it.

In Michigan