Thursday, April 5, 2007

Visit #3 to Johns Hopkins

Yesterday I had my 3rd appt with Dr Wigley at the Scleroderma Center at Johns Hopkins in Maryland.

My wife and I drove down late in the morning, ate some crab cakes for a late lunch and went over to the center for a late afternoon appt. We drove back home after the appointment.

When the Dr walked in, I said 'Give me some good news - you found a cure.' He then discussed some cases with people he is treating that have it more advanced then I do and the more radical treatments they are using that are showing promising results. But, in my case, and my age (I am relatively young) he would be more concerned about the longer term effects of those treatments. I have to tell you I've never been so relaxed around a doctor as I am with Dr Wigley. He's so knowledgeable and comfortable in explaining things at a level you can understand (even with as low an IQ as I have).

We reviewed the medication I am on, which the Dr pretty much had memorized, and then we discussed how I feel. It is hard for me to be overly optimistic on how I feel because it constantly changes often many times throughout a single day. But overall, I had to say I am feeling a bit better. The pain in the left leg is, at least for now, all but gone. They could still feel the fibrosis though when they examined me. The pain in my right leg is also less then it was. I still have the creaky door syndrome in my forearms but that isn't a source of any real discomfort. There is a new drug coming out of the research phase he estimates in 4 months that has shown to be a very effective drug to treat fibrosis so there's something to look forward to, though I'd rather it just go away on its own!

They checked out my skin tightening over my body which they have a rating system for. 0 means no involvement, 1 means some involvement, 2 means more, etc. I don't know how high the number goes up to but I know it is above a 2. Between my abdomen and thighs it 0 - no involvement. my hands and forearms and lower legs are a 1 - some involvement. My chest is a 2 and the tightest part but it doesn't really bother me too much. The really good news is there appears to be no further tightening since I was last there. For the skin tightening, I can actually feel it as it was happening and I haven't felt it occurring.

We talked about my lungs which is always a problem area for scleroderma patients and my last test. One part of the test showed a variation from the previous one, though nothing drastic. Most results actually showed the same or better then the prev test. The doctor asked that I get another CAT scan of my lungs to double check.

I have blood taken every 2 weeks to make sure the main medication isn't causing any obvious problems and so far it has been fine. He said after the next test to go every month instead since my body is tolerating it well.

I will stay on the same medications and dosage and will head back there in two months for another follow up visit. Just for one of the medications I take, the monthly cost, if I didn't have medical benefits, is $930 per month or $11k per year. It costs me $25/mo. For a guy that never was sick, I guess the insurance plans are hating me now!

All in all, positive news and the doctor is pleased and still very optimistic.

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