Re: New/Old Member - Andy

[Guest guest]

Hi ,

I just saw your msg today, I just had an ear surgery due to stills so I've

been kindof MIA for a bit.

Anyway, I haven't had the joint replacements your son has, but I have had a

lot of back problems because of stills and my wrists, hands, shoulders,

knees and ankles are all having major problems.

I tried Remicade with MTX and Pred, it helped, but not as much as my Rheumy

wanted.

When Kineret came out, since it was targeted for IL-1 which is more for

stills, we made the decision to switch to that. I've been on Kineret for a

long time now - it will be 3 years in March. My new doctor (and I) want to

change it to the IL-6 drug that will be coming out once aproved by the FDA

sometime this year (there are a few trials of it still, but my current

doctors office doesn't do trials at all). I need to switch because Kineret,

although it worked great for me at first, isn't working for me much at all

anymore. If I stop for a few days I can tell it still helps, because I can

barely move without it, but it still gives me hardly any benifit compared to

what it did.

Right now I am on Kineret, MTX Injection (Seems to work better than pills),

Prednisone. I have been on Arava and celebrex also. I have switched to

Edodec as an anti-inflamatory drug to work with the three primary (kineret,

MTX and pred). I use Duragesic Patch for the pain relief and other meds for

break through. I have Trigeminal Neuralgia in my left eye that was caused

from shingles on my face (that I had on my face twice). I have now had

shingles four times.

I've had many ear infections from stills and have had two ear surgeries

because of it. I'm hoping they slow down, because I had the two surgeries

within 18 months of each other. Before that I had over 26 surgeries for

other reasons related to inflamation and I had my tonsils out 3 times as a

child. Crazy stuff. but it happens - even had a bone spur removed when I was

9 years old. Never knew why until I was dx'd with stills. I get fevers

almost daily now, which is why my dr wants me on the IL-6 blocker. Kineret

helped that at first. Remicade did to a degree, but not as much as Kineret,

my guess and the two different doctors guess is that because Kineret is

targeted at IL-1 which is based at the disease that Stills disease is caused

by. But no one understands why one drug helps one person more than

another. So if your son hasn't tried Kineret yet, I'd suggest that he

does. If it works, he'll know within a month. If it doesn't, he can always

go to Remicade until the IL-6 drug is out.

feel free to ask any questions about my health and what I have gone through

if you want. I'm sorry your son has gone through so much.

I guess all I can say is we all understand and I'm sorry.

Alli

> 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,

>

>

>

>