June visit to the Johns Hopkins Scleroderma Center

Today was another checkup visit for me at Johns Hopkins It's been about 8 weeks since my last visit. My wife had training at work so she wasn't able to go with me. I woke up around 4:30, showered and drove down for a morning appointment. There's so much less traffic at 5am in the morning. I guess that's because the sane people are still asleep.

Everything at this checkup was very routine. They asked me the standard questions about how I was feeling and any changes I've noticed. They then examined me checking and rating my fingers, hands, arms, chest, back, abdomen, upper legs, lower legs and feet. They give a rating of 0-3 for each area. 0 means everything is fine. 1 means some damage/tightness. 2 means moderate damage/tightness and 3 means severe damage/tightness. I got some 2's on some of my fingers and my chest. One of the doctors said my chest was a 3 since it's real tight, but Dr Wigley said it was a 2. The good news is nothing is worse then it was two months ago at my last visit. When I was last there in April, the fibrosis in my tendons in my lower legs was much better then it was the previous visit, while my forearms were pretty bad. About 3 weeks or so ago, the fibrosis in my forearms started to improve. There are still some days when it's not so good and uncomfortable, but frequently I don't even notice it any more. Dr Wigley was happy to hear that.

From everything I can feel and tell him and what he can see for himself, things look positive. No one can tell if or when it might start to actually improve and I'll gain more range of motion in my fingers, wrists, knees and ankles, so we just have to wait and see. He indicated that I'd stay on the higher dosage of CellCept for another 4 months. After the 4 months on the higher dosage (total of 6 months since I've been on it for 2 months now), we'd go back to a slightly lower dosage. At least with the current knowledge of the disease and treatments, he says I would be on CellCept at a low dosage, for the foreseeable future. Such is the life of a fellow with an incurable chronic disease.

After I was done with the exam, they were doing another clinical research project so I donated 8 vials of blood for the research. They will take blood from me twice a year for 3 years for this research. When I was finished and scheduling my next appointment which is August 1st, I saw a flyer that they have a new web site up for the Johns Hopkins Scleroderma Center. It's at http://scleroderma.jhmi.edu/ . When I got home I checked it out and it contains the most rational information I've read anywhere on the disease. At the time I went to the site, Dr Wigley is pictured in the middle of the page in the image associated with the For Physicians section.

A few people have asked me if I'm still working. Yes, we haven't hit the Mega Millions lottery yet. Other then the handful of visits to Johns Hopkins and 1 sick day, I commute to work every day.