Winter 2010 Scleroderma Update

It's still the first half of January so I think it is still ok to wish everyone a Happy New Year! It was 10 years ago that after kissing my wife and kids after the ball dropped that I drove over to work to monitor the applications for any Y2K issues. I think many of us would consider 2009 to be overall a pretty crummy year, so here's hoping 2010 is better for everyone. As far as my health goes, 2009 wasn't a bad year at all in comparison from 2006 and on. I remained stable and even saw some slight improvement over my dealings with Scleroderma. Today was my first visit to Johns Hopkins in 2010 approximately 6 months since my last visit. Here's what transpired today.

My appointment with Dr Wigley in Baltimore was at 10:00am. My older daughter decided to be my co-pilot today which I think was based 3/4's on missing a day of school and 1/4 on hanging with her dad and Dr Wigley. Ok, maybe 99% missing school and 1% hanging with me is more realistic. We set off just before 6am and hit the Johns Hopkins parking lot at 9:15. They took me right at 10 with the standard weight, blood pressure and temperature all which were fine. A couple mins in the exam room and in comes Dr Wigley with a big smile. Elizabeth introduced herself and we got down to business. We reviewed the medications I'm on and how I was feeling. The only thing that isn't close to perfect are some of my fingers which seem to get very cold and very sore during the winter months. Nothing I can't deal with but I let him know. I then had the exam and other then a couple fingers he said my skin looks normal everywhere. He also did some basic strength/flexibility tests which are all fine. I'm weak and less flexible compared to before being sick but I'm much improved over when things weren't good.

We then discussed the big question - stopping the main medication called CellCept. As a reminder, CellCept is a medication used to purposely weaken the immune system typically used in patients receiving organ transplants so their bodies don't reject the transplant. In my case, my immune system thought it needed to produce collagen when it didn't and that's the basis for this disease. So the decision is for now, no more CellCept. He did mention that the lingering effects of being on the medication for 3 years (2007, 2008 & 2009) will remain in my system over the next few months so it will be like I'm slowly coming off the medication which itself has been reduced to 25% of what it was when I was taking it 4 times a day. He indicated they see about 10% of the patients have a negative reaction which means the disease could flare up again so I need to cognizant of anything that seems to be out of the ordinary for any extended period of time. He handed me some prescriptions for another echo-cardiogram and pulmonary function test (lung capacity) which I will continue to do annually and told me to come back to see him again over the summer.

So other then my body healing itself or some new treatment that is discovered, it is as good as it's going to get but more importantly, hopefully nothing is going to get worse. So I guess this is what "remission" is like as Dr Wigley calls it.

After the exam they took a few vials of blood for research and I walked 6 minutes for another research project. I then participated in a 3rd research test which involved breathing into a machine not unlike a pulmonary function test which I take each year but this is to measure the specific gases that lungs of someone with scleroderma exhales in comparison to someone without the disease. It has to do with research on pulmonary hypertension which is high blood pressure in the arteries that supply the lungs. Pulmonary hypertension is not uncommon for patients diagnosed with scleroderma. I keep wondering why some geek like me needs to even know these words?

My next visit is the 3rd week in July and though Dr Wigley is a magnificent doctor, it will be great not to have to speak with him before then after coming off the CellCept medication. We left the Scleroderma Center around 11:15 or so to head home.


That's all I have for this update. I hope 2010 brings you all much happiness, much prosperity, and most importantly, good health!

Stay well!