New/Old Member - Andy

[Guest guest]

Hello Group

My name is Puente and my son Andy has Still's disease. I was a member

of the group a few years ago and some of the old timers may remember me. I

have rejoined in order to learn about new medications and treatments that

people have tried; what worked and what didn't.

First, for the newer people in the group, as well as updating the older

members (Cat - sorry about not staying in touch, too much happening with

Andy), let me give you Andy's background. He was diagnosed 14 years ago when

he was 25. It was the usual story; admitted to the hospital with spiking

fevers, he was examined by almost every specialist there is and given every

test in the book. On the sixth day, a rheumatologist arrived, looked at the

chart, asked two questions, and diagnosed him with Still's. One of the

questions was did you have JRA as a child? The answer was yes when he was

eight years old. He was treated with six months of aspirin therapy (30 tabs

of baby aspirin per day) and he went into total remission until that summer

some 17 years later when AOSD struck. Despite all of the drugs he has been

on over the years, his disease continues unabated and is still ravaging his

body.

Within 18 months of the onset of the disease he had his first hip

replacement, followed a year later by the second one. Then in year 4 he had

his first knee replacement and then his second one sometime later. He had a

C2-C4 vertebrae fusion, a procedure that requires the head to be immobilized

with a metal ring screwed into the skull and sleeping upright in a chair for

3 months. Both ankles and feet are fused with plates and pins. Bones in his

hands have fused spontaneously and recently he had jaw surgery to correct a

problem in one of the joints. His shoulders are extremely painful but he

wants to put off those joint replacements as long as he can.

He has been on Plaquenil, Methotrexate, Arava, Enbrel, Celebrex and now

Orencia. His pain meds have included over the years: Tramadol (Ultram),

Oxycodone, and a few others. Prednisone has been his mainstay; he is

currently on 15 mg a day, but at times up to 80 mg per day. He also takes

200 mg of Celebrex 2x daily, Orencia - one infusion per month and Oxycodone

for pain as needed. He was on Tramadol, but became addicted to it and had to

go through full-blown withdrawal (sweats, chills, cramps, etc.) to get off

of it.

For those of you who are new members and have recently been diagnosed, I do

not wish to frighten you with all of these details. Andy's case is very

extreme and it is rare that Stills patients have this many problems. So, it

doesn't mean that your disease will progress in this fashion. I list his

background and his drug regimens here so that people whose joints are more

affected than others can help me and Andy with some possible solutions.

Despite his problems he continues to work full time as a private school

teacher, has a loving wife, a 2 year old son, and one (a girl) on the way.

However, his rheumatologist is concerned (and so am I) about the disease and

its progression. Orencia is not having the desired effect and he is

searching for alternatives.

That's where all of you can help. I would like to hear in some detail what

has helped you. I know all of the drugs that are on the market today and a

few that are in Phase III testing. What I am looking for is what has worked

for you. The more specific you can be the better I will be able to assist

Andy and his doctor in looking at what works in Stills patients and what

doesn't. I know that all people are different and what works for one won't

necessarily work for another. Even though Andy has been on a number of the

more powerful drugs that haven't worked, maybe some of you have tried

various combinations that he has not. I know that his doctor is struggling

to find a solution. Most rheumatologist don't have that many Still's

patients and they are just as eager to hear about possible combinations that

have worked for other people. Let's face it, there is not much research

going on about Stills and doctors are left to their own devices to go

through a process of trial and error to find out how the person responds to

each drug or combination. That is the nature of the beast today.

Thanks,