My experience with Adult Still's Disease

(A rare disease about which there is little information available)

By Clive Montague

Taken from: NRAS magazine, Winter 2011

A year before any symptoms suggesting a rheumatoid disease became apparent I developed a rash on my chest and upper arms. The dermatologists at the local hospital were baffled and after being poked, prodded and photographed, I was examined by nearly all of them. Their decision was treat it as eczema.

It was only a year later when my knee suddenly swelled up over night that I thought I had another problem. My GP went through the standard checks; sticking a needle in to check for fluid, an X-Ray and various blood tests before starting me on anti inflammatory drugs. In the days that followed instead of getting any improvement my shoulders and arms began to stiffen up adding to my discomfort. Even my jaw movements were painful, making talking and eating difficult.

Due to the long delay to see a rheumatologist on the NHS, 16 weeks at the time, my GP arranged for me to see one privately. By the time I got this appointment, 6 weeks later, I was as weak as a kitten, unable to even open the car door. I had to sit diagonally across the back seat as by now I was unable to bend my legs. During this wait I had tried to walk daily whatever the weather; this proved a real struggle as I hobbled up and down outside my home, I dread to think what the neighbours thought.

The first thing done by the rheumatologist was to inject my worst knee with steroids before starting me on a course of drugs, first Mobic, later Voltarol and then Prednisolone. X-Rays and a visit to the orthopaedic surgeon showed no problems with my joints. Despite all this I got progressively worse. I was always tired and wanting to sleep whilst the rash on my upper arms that I had had for over a year seemed to worsen. The next stage was to start me on Sulphasalazine. This proved a disaster and culminated in being rushed to hospital where I ended up in the High Dependency Ward. All arthritic medication was stopped and I was treated with anti biotics through an infusion. 

It seemed that the platelets in my blood had apparently gone haywire and were described as sticky. Despite feeling cold, I had an extremely high temperature which was only reduced by having fans blowing over me for about a week to bring it down. My weight fell by about 5 kg which, as I probably was a little overweight, would normally have been a blessing but not now. Once things were brought under control I was discharged. For a short time everything at last seemed to be going alright, the joints were stiff and sore but I took no medication, something that wasn’t to last.

While the GP had suggested the problem was rheumatoid arthritis (RA) the rheumatologist didn’t accept this because I wasn’t reacting as he expected. He arranged for me to see Professor Maini at Charing Cross Hospital in London, another few weeks’ wait. After taking what seemed like an armful of blood for the many different tests he carried out it was decided I had RA and Methotrexate was prescribed.

At this time I moved house going north to Lincolnshire. The new rheumatologist tried me on several different rheumatoid drugs over the early years while at the same time trying to wean me off steroids. Each time things only got worse. Despite four years earlier being told my joints were all right, both knees were now showing signs of excessive wear. A second opinion by a surgeon friend confirmed the need for joint replacement and both knees were replaced.

For nearly five years every rheumatologist I had seen said I wasn’t reacting as I should for Rheumatoid Arthritis. Eventually I was admitted into hospital again and more tests were carried out. These comprised scans, X Rays, and other even more uncomfortable tests. I think I must have had every blood test possible and during these it was found that my ferritin level  was dangerously high. It seemed that to reduce it, it required I had a number of blood transfusions.

It was only at this stage that I was told I had ADULT STILL’S DISEASE. This is a rare disease and there is little information available. Most that I have found comes from a United States web site . The only difference in treatment was once again to increase the steroids. For the rest I stayed on Methotrexate and Celebrex, the same drugs I had been on for RA, later Infliximab infusions were added.

While they seemed to help they haven’t stopped further major joints deteriorating and having to be replaced. I have become an unpaid tester for the alarm systems at airports, railway stations and other places having metal detectors.

In America the preferred drug seems to be Anakinra; this is a drug that blocks the inflammatory protein interleukin-1. Although a friend in the States with RA tried it she said it had little effect on her, however I see it is now slowly being used more and more for ASD. When I raised the question on the NRAS Forum  I received one answer telling me about someone suffering with ASD, not a member. 

My rheumatologist has just succeeded in getting funding for me to change to Anakinra and I hope to begin shortly.