Arthritis Insight-Member Stories-Alan

Alan's Story

For over thirty years I have been extremely blessed in having a very active
and healthy life. Unfortunately, however, that was about to change.
In 1994, I had a bout of double Pneumonia and was hospitalized for one week.
Approximately 18 months later, I developed walking Pneumonia. In reading
about Still's Disease and RA today, some experts say that a genetic
predisposition and a severe viral or bacteriological illness can be
catalysts for autoimmune diseases. I wonder if that was true in my case
because 3-4 months after the walking pneumonia, I would get periodic (and
unexpected) shakes, followed by a severe sore throat and lymph gland
swelling. Shortly after getting those symptoms, I would also have intense
fevers (104+), night sweats, and inflammation in my joints which would leave
me totally incapacitated for days. I have had the flu in my life, but never
experienced anything as intense and debilitating. Prednisone, combined with
augmentin and vicodin were prescribed for the symptoms which would dissipate after one week. After that, my health returned to normal. However, I would get the symptoms again in about 4-6 months. My primary care physician had no initial answers, but suspected that I has some sort of autoimmune disorder. Numerous blood tests were taken to determine if I had Lupus, Lyme disease, HIV, Hepatitis, etc., which all came back normal.

The confusing part of this illness was that I would get different symptoms
and varying stages of intensity during each flare. For example, I had one
flare with severe neck pain and eye soreness in addition to the symptoms
mentioned above. I was hospitalized for observation and was placed in the
care of a neurologist who thought I had meningitis. This was ruled out
without a tap through numerous physical examinations. During another flare
I had night fevers with temperatures in excess of 105 degrees only to drop
down to normal by the morning.

Because my primary care physician could not figure what was wrong, I was
referred to an infectious disease specialist who examined me and took blood
tests to determine if I had some sort of rare disease. Again, there were no
answers. He in turn referred me to a Rheumatologist who, after looking at my
case history and doing tests of her own, narrowed my illness down to either
Lymphoma or Still's Disease, which I had never heard of at the time. A
gallium scan was performed which ruled out the Lymphoma and I was diagnosed with Stills in July 1999.

Although there was really noting I could do to prevent the flare-ups from
occurring, just knowing I had the "identified" disease and being armed with
the medicine I needed made me feel somewhat better. I also was lucky in that
my last bad flare was in January of 2000. I had read that Still's can go
into remission and was hoping I would be fortunate. In May, I had a minor
flare that contained the accompanying sore throat, fevers, and headache.
However, all of these symptoms were less intense then before. I did,
however, have really bad stiffness in my major joints and hands. These went
away in about one week. In August, I woke up one morning with severe stiffness in my wrists, hands, knees and hips. Just thinking that I probably "slept wrong", I thought nothing of it although this stiffness lasted for a few days. Surprisingly, all of the other symptoms I would get when I had a Still's flare were absent.

About a week or so after that I started experiencing fatigue that would
leave me almost devoid of energy by the middle part of the day. I would also
experience what I call "dead hands" in the afternoon and would have to rest
them before they were of any use. Fearing that my Still's Disease had taken
a new direction I made an appointment to see my Rheumatologist. After
providing her with information regarding my symptoms, she ordered a bone
scan and blood test. In addition to a cbc and sed rate test, she also
ordered an rf and ana test. These came back normal. The bone scan, however, revealed severe inflammation in both wrists. My Rheumatologist diagnosed me with Rheumatoid Arthritis and Carpal Tunnel Syndrome in both hands from inflammation pushing on the nerves. I was prescribed prednisone and azulfidine daily, and instructed to wear wrist splints. Unfortunately, the azulfidine and prednisone combination did not relieve me of the stiffness and fatigue. Subsequent blood tests revealed I had anemia and was failing my liver function tests. I was prescribed celebrex and vioxx which did not alleviate the symptoms. Because of the ineffectiveness of the other medications and my deteriorating condition, I am now going to try enbrel starting next week (December 2000). Although aggressive and risky, I feel it is worth it at this point.