Adult Onset Stills Disease article

[Guest guest]

Dear Dr. , I have read the article you did on Stills Disease for the

New York Times and must inform you that it is very incomplete. While it does a

decent job defining just how hard this disease is to diagnose, it implies that

there is a cure for it, and a simple one at that. If that were to be true, I

would not be unable to work any longer and I wouldn't have had to spend nine

weeks in the hospital (5 since mid December) since late January of 2004. There

also wouldn't be the numerous others out there in the same boat as I am.

Stills is indeed very rare and no two people are effected the same way nor

will each respond to the same treatments. The gentleman you wrote about is

rather lucky, and I pray he never has to deal with this again. I would kill for

a remission.

I have been seen by two Infectious Disease Dr's, three Rheumatologists (and

did find an outstanding one in Lebanon, Pa who has dealt with Stills after a few

months of searching) numerous Neurologists for the incapacitating headaches I

have almost every single day. To date, nothing has helped with the headaches and

I have been on more " migraine " medications than I can recall. The headaches

started at the exact same time the rest of my onset symptoms did, even though

violent headaches are not the " norm " for people with Stills, although there are

more than a few of us out there. Aside from the headaches my other onset

symptoms were violent, uncontrollable shaking/chills, fevers up to 105, swollen

lymph glands with no evidence of infection, violent joint pain with the overall

inability to move. I have not had many incidents with the rash, although I did

have a few. My WBC count was through the roof, as was my sed rate, C-Reactive

Protein, CPK and a bunch of other indicators were out of whack. No infection was

found during my onset and antibiotics did little if anything for me.

I was clinically diagnosed with Stills on 4/4/04 but it was mentioned as a

possibility as early as mid February of 2004. I did some research on it and

distinctly remember that " sick to your stomach " feeling I got after seeing that

my blood work and symptoms really lined up with Stills. I was praying to God

that I didn't have it and still wish I didn't.

I had every test imaginable run on me to rule out Lyme disease (both the Lyme

titers numerous times and the Western Blot test, I even had spinal taps to check

for Lyme & Meningitis) Lupus, Rheumatoid Arthritis, Reynayds Syndrome, cancer

and tons of other tests. I think it is fair to say I am the OPEC of blood work.

I have been hospitalized locally (Wilkes-Barre, Pa) and down at the Hershey

Medical Center. I was seen by an Infectious Disease Dr. at the University of

Pennsylvania. Everything indicates that I have Stills. I am a lot of

medications, some help but are akin to a double edged sword. I can't get below

20 mg/day of Prednisone without having an almost instantaneous flare. I am on

Depakote to try and control the headaches and really don't want the side effect

of added pounds that comes with that drug. I also now have Hypertension,

Hyperlipidemia and depression/anxiety.

I have had Botox injections for the headaches and that also failed to help. I

was on Enbrel, Methotrexate & Folic Acid but I developed numerous Central

Nervous System problems and that regiment was discontinued in December while I

was hospitalized in Hershey. I now am on Gold shots, but have not had any

benefit yet.

I was one incredibly active man before this started. I am a partner in an

Auto Repair business and used to average 50+ hours per week. I also am married

with two boys and always had time for my family. Until April of 2003 I was a

powerlifter and was at the gym 2-4 nights per week. I never had a drug or

alcohol problem. I was in the Pennsylvania National Guard years ago and take my

kids fishing as well as fish in Bass tournaments every chance I get. To sum it

up, I was in shape and incredibly active. Just like the flick of a switch, my

life has changed. Every day I deal with pain. Pain that I used to consider bad I

now consider moderate. My headaches get so bad that I see double and quadruple.

I also have clenched my teeth so hard due to the pain that since last January I

have broken 11 teeth. I am unable to sit nor stand for any length of time as my

legs will burn like crazy, my feet, ankles & knees swell. My back will hurt so

badly at times that I pray God would take me. I can't do any kind of repetitive

motion with my hands or arms as they will swell & hurt like hell too.

I can hardly walk without a cane on a good day, and need a walker on a bad

one. If I have to walk any kind of distance I have to use a walker. I have had

to swallow a lot of pride in the last year +, but have come to terms with it as

well as can be expected. I also have few other problem related this that I don't

care to mention.

I also found out two weeks ago during my most recent hospitalization that my

spine is deteriorating. I had a spinal MRI performed on me in December at

Hershey and though there were a few minor problems, they were not severe. Right

around the middle of January I would wake up in the middle of the night

screaming in pain due to both my lower back, neck and headaches. My most recent

spinal MRI showed I have a herniated disc in my neck, a herniated disc in my

lower back, 3 " cracked " or " torn " discs on top of the lower herniated one, two

buldging discs in the area of my shoulders and arthritis at the base of my

spine. I have had numerous episodes where I could not stand without falling and

I never know when that may happen. Either someone misread one of the MRIs or my

spine is deteriorating rapidly. Judging by the pain, I tend to trust the last

one.

I have had at least 7 MRIs on my head with & without contrast. The only

change since last January is an " artifact " approximately 3mm in my brain. I have

also had numerous CT scans & x-rays. The only significant finding on a CT scan

was that I had a severe sinus infection in December. I have also had EKGs,

EEG's, Brain Wave studies, etc. I have been to a neuro ophthalmologist to rule

out any problems with my eyes and will have to see him every 6 months as

Prednisone can harm the eyes. I have also been seen by a Psychiatrist, am seeing

a Urologist and see my PCP's frequently. In a little over a year I have

accumulated a stack of medical records over 3 " thick.

I hope this doesn't come across as an attack to you, I just wish more people

understood what a lot of us deal with. I am sure there are many others out there

with other rare diseases that deal with the same problems we do. I have been

told " You look fantastic " even though I was hanging on by a thread. People tend

to think that because you " appear " normal, you aren't sick. I have run across

more Dr's that have no idea what Stills is and have a hard time believing me

when I tell them about the pain I am in. Luckily for me I have a fantastic PCP

(partnership, there are two of them) and a top notch Rheumatologist. I despise

going to the ER (which happens frequently) as no one there has a clue about

Stills. I even bring brochures from the Stills Foundation but many Dr's brush

them off and go by what there outdated books say. Much more is understood about

this disease these days, and new things are coming up all of the time.

For your information, and if you are interested, check out the " International

Stills Disease Foundation " on the internet. It is a vast resource and contains

more information than any medical book's " definition " I have yet to see. There

are also member histories on that site, Dr's that treat it and are familiar with

it, etc.

If I can answer any questions for you, don't hesitate to email me. This

disease has changed my life in ways I never dreamed possible and I am still

working on accepting what has happened to me. I was 32 when this hit and just

turned 34 on March 3rd.