Summer 2009 Update - Scleroderma Center Visit

It has been 6 months since my last update in the beginning of the year but it seems much longer then that to me. I set off early this morning to Baltimore and had no traffic at all so I was pretty early when I arrived at Johns Hopkins Scleroderma Center. I had some time to hang out in the car and read for about 40 mins.

When I went in, it was pretty busy in the waiting room but they always take good care of you. My weight is the same and my blood pressure is excellent. If I wasn’t sick I’d be in great shape! I was brought into one of the exam rooms and waited there a while before Dr Wigley came in. We chatted for a bit and went over all my medications before reviewing tests I had in the beginning of February. My lung test measures 2 critical items and 1 of those areas is now normal (98% of target). The other area (and I can’t recall the technical names of the areas) is flat from what it was last time but well into the acceptable range. My echo cardiogram wasn’t there so I need to call the hospital and get them to send it, but he has no concerns with it based on everything else.

For the exam, everything was the same as 6 months ago. When he was done checking me out, we discussed what I was most concerned with and that is stopping the primary medication called CellCept. Last visit he indicated that we’d likely stop it when I came back this time, but he started out the discussion stating that he now feels that 1 year on the lower dosage that I’ve been on is what we should shoot for as they were seeing about 25-30% of patients have a flair up after going off the medication before 3 years. So I get another 6 months of being on the medication that is helping suppress my immune system enough so it doesn’t do what it shouldn’t be doing in the first place. He said when I return in January if there’s no indication of anything negative happening, we’d probably go off the medication.

For about 2 straight years, every day, I took the equivalent of 12 Advil (ibuprofen) a day – one 600mg tablet 4 times a day. In March, I decided to slowly reduce the dosage and today I normally take the equivalent of just 3 Advil (one 600mg tablet) in the morning and that’s it. The main reason for the ibuprofen was for pain and for helping control the swelling primarily in all the joints which are effected. So far no ill effects from reducing the dosage there. I still haven’t had a headache since I started all this medication which is 2.5 years now.

When Dr Wigley was wrapping up with me, I mentioned the few folks in the waiting room, some of them in wheelchairs, that have that stereotypical look that individuals with scleroderma have – tight shiny skin on the face and hands. He said I was lucky to have had it diagnosed so quickly and then reacted well to the medication. That’s an understatement! I then asked if he was planning to retire any time soon and he said there’s a lot of exciting things going on and he isn’t retiring until he finds a cure. Dr Wigley is the man!!

After we finished up they took a few vials of blood from me for various research projects and I walked for 6 mins as part of another test they are running. I then setup my next appointment for mid January 2010. Hard to believe it will be 10 years since Y2K. I remember watching the ball drop, kissing everyone, and heading off to work to see if everything was still functioning.

So why did I start this update by saying it feels like more then 6 months? Probably because in the beginning of February, the company I worked for decided to essentially shut down their Internet division as it was structured and myself and a large portion of my team was “downsized”. I was very lucky though to quickly find an equivalent job and I am now at a new company responsible for their web publishing platform. With everything that transpired, it seems much longer then 5 months since I left that last job.

If things continue to go well, and I sure hope they do, you won’t hear much from me so I hope you all have a great summer, start of the school year, Halloween, Thanksgiving and a happy holiday season and New Year! You did start your holiday shopping already didn’t you?

Stay well and stay employed (for those that aren’t already retired and playing golf every day).