Wednesday, January 19, 2011

2011 Scleroderma Winter Update

Happy 2011 everyone! I'm sending out a rather uneventful update to the folks that have been following my updates on having Scleroderma. Today was my first checkup in 2011 and 6 months from my summer checkup in 2010. Because wife and kids have been dealing with vacation and snow days, it wasn't practical for one of them to take off, so just after 6am I set off to Baltimore and Johns Hopkins on my own. It was raining, but not sleet/ice like we had yesterday so it wasn't rough driving.

My appointment was at 10am and the waiting room was pretty busy, but I didn't wait long. Blood pressure and weight are fine and where they should be. Dr Wigley came in with a big smile and he commented how I didn't have any of my gals with me this visit. I told him over the summer for the next visit someone will probably tag along. I also found out that Dr Wigley was interviewed again on The Today show to discuss Raynaud's so I asked him about it and he said the interview was fine, but he was disappointed that there wasn't enough time to talk about the new treatments. I have Raynaud's as part of Scleroderma. My fingers turn purple, not white as discussed in the video. You can see the short video clip of the interview here -

We reviewed the medications I'm on and then started talking about how I felt, any issues, etc. Everything is stable and my condition is unchanged over the past 2 years including the past year since I've been off the main medication of cellcept. Dr Wigley said he needs more patients like me. He checked me over and everything looks very good. We then discussed reducing one of the medications I'm on which is Protonix. It is used to address acid reflux which is common in scleroderma patients because of a hardening of the wall of the esophagus. He said I should start by taking the medication every other day for a while and if things are fine, go to once every 3 days, etc. He said the medication slows the absorption of calcium, so if I don't need it, I might as well not take it. We'll see how that goes. Though no where near the cost of what the cellcept medication was, I'm sure my insurance company won't mind me eliminating Protonix at a cost of about $1200/yr.

Dr Wigley gave me some slips to have another Pulmonary Function Test (PFT) to measure lung capacity and an echo cardiogram to make sure my heart is functioning properly and there is no scarring. He said to come back and visit him in 6 months so my next appt is near the end of July. They then took 5 vials of blood for research and asked if I would participate in another test so I said sure. The test was very similar to a PFT where they were measuring lung capacity, etc. and it took about 15 mins to do the test. They are always extremely glad when someone is willing to help them with their research and all I think about is I might not be here if someone else didn't volunteer years ago, so how could I even consider saying no?

For me this Thursday (tomorrow as I write this) will be my last day at my current company and on Friday I start at a company in NJ. I had a terrific team where I was and we did fantastic work, but it is a better opportunity at the new company so I'm making the move. I'll be back in NJ with about half the commute I've been taking for a few years..

That about wraps it up for this latest update. Nothing very exciting, which I guess is a good thing. I'll send out another update the end of July, so we just need to get past a cold & snowy winter and a rainy spring and it will be summer before we all know it.

Stay well everyone!

Tuesday, January 4, 2011

Happy Holidays, Happy New Year & Dr Wigley Video

Happy Holidays & Happy New Year everyone! I returned today from a two week vacation to my in-laws for Christmas and my parents for a nice Caribbean cruise with my family to celebrate my parents 50th wedding anniversary. That means back to work tomorrow :-(

I happened to spot a video of Dr Wigley discussing Raynaud's on the Today Show from another scleroderma blogger at . I happen to get blue/purple vs white fingers as shown in the video. The picture on Wikipedia at's_phenomenon shows what my fingers look like when Raynauds kicks in. I'll include a link to the video as well as in my upcoming follow-up posting after another visit to Johns Hopkins in just over 2 weeks.

Until then, stay healthy!