Steve Thomas


It started in February of 94 at age 48 with small patches of wildly itching, lobster pink rash on the knees and back of thighs. Also, my previous mild, hereditary arthritis got worse in various joints, one at a time, ankles mostly. I attributed this to a heavy physical work load remodeling a new [old] house. Various doctors including a GP and dermatologist prescribed cortisone creams and oral 5-day courses. These had very temporary and incomplete results. 

The rash gradually got worse and worse and by June 17, 94 covered 50% of my body. This simultaneously blossomed into a major [102 F] fever...and I never get fevers. Joint pain became intense. My GP hospitalized me instantly and called in a Rheumatologist who immediately, but tentatively diagnosed Still's. He prescibed Indocin for five days but that did nothing. He then switched me to oral Medrol steroid. Since there is no test, just a set of symptoms, and since I travel extensively in third-world countries, he called in an infectious diseases specialist. They ran $27,000 in tests and blood work which turned up nothing. The diarrhea from the tests made me even sicker as I could not keep oral medication in my body long enough for it to be effective. At one point I was in intensive care with pericarditis and stomach pains. Inflammation around the heart being about the only way Still's can kill, [and I knew it] things were a little dicey. At one point they were giving me 40 mg of IV cortisone a day. Intense! After they stopped the testing things got better and I got out of the hospital . 

Fevers continued for several weeks in spite if 32 mg per day of Medrol. [like 40 mg of prednisone] I have had three rash-only attacks a year since 94. I lost 35 lb. [of 220] which came back at exactly the same rate as I got back my strength. The only permanent damage seems to be to my wrists which are still weak and sore, a stiff left sholder, and psoriasis.

 Doctors freely admit they don't have a clue as to the causes of this unusual disease. One textbook says environmentally triggered, while the next says it might be a virus. My best guess is that mine was trigged by a two month exposure to paint thinner fumes. In the process of remodeling a house, we had carpet removed from a tile floor in the basement. The workers found the only way to get the glue off the tile was to soak it in paint thinner overnight. The fumes pervaded the whole house and also soaked into the slab. This may be a coincidence, but that exposure immediately preceded my first symptoms. Interestingly, I have always been somewhat sensitive to paint thinner. If I spilled any on myself while cleaning a paint brush I would break out in a Still's-like rash! Needless to say, I ventilated the room above the slab for months and successfully outgassed all paint thinner residue. I lived near chemical plants all through my youth. My Dad is a chemical engineer

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