Scleroderma Blog

January 2016 update

2016-02-15T18:55:00.003-05:00

I have a bit of catching up to do as I have 2 visits to report on and I realized that I never hit "Publish" to push the March 2015 update to the web site. It's the post just below this one if you scroll down. After my visit last September I didn’t follow up with an update and I had another visit in January I’m just getting around to reporting on. Beginning last June (2015) I started to feel

March 2015 Update

2015-04-01T17:00:00.000-05:00

I just realized this post from March 2015 was never published and was just sitting there waiting to show up on the web site.... Happy spring, though the weather has been more like winter! The end of March I had my semi-annual check up at Johns Hopkins Scleroderma Center in Baltimore. It was delayed about a month due to a severe snowstorm early in March that would have prevented me from getting

September 2014 Update

2014-09-10T20:24:00.002-05:00

Earlier in the week I had a 6 month checkup at Johns Hopkins. 6 hours of driving for 1 hour spent with the doctor that saved my life. Everything has been stable with me for the past year and as Dr Wigley said when he left the exam "You are healthy - let me go find a patient that's sick and needs me". Well, as good as sounds, I am still "sick" and need to remain on a low dose of the medication

Scleroderma Day 2013

2013-09-22T19:54:00.000-05:00

My wife and I were able to attend Scleroderma Day hosted at Johns Hopkins. It started out with Dr Wigley introducing himself - "My name is Dr Frederick Wigley and I was put on this earth to cure scleroderma." The first part of the event were presentations regarding the Johns Hopkins Scleroderma Center including a brief chronology which includes a couple of doctors in 1980 and 1 nurse handling

2013 Summer Update

2013-09-08T17:12:00.002-05:00

The unofficial end of summer has come and gone and so has another checkup for me at the Johns Hopkins Scleroderma Center in Baltimore. I had my last checkup in February and it was time for another quick trip down to see Dr Wigley. I have to say that I don't recall there being less traffic on any other trip. Maybe it's because it was the day after Labor Day, but there was never a slow down

2013 Winter Update

2013-02-07T07:36:00.000-05:00

Happy 2013 everyone! It's been a few months since I last sent out an update and I notice that this update is the big 2-0. Also in 2013 I hit the big 5-0 so that's another milestone coming up this year. I had a checkup this morning at the Johns Hopkins Scleroderma Center in Baltimore, MD. When I arrived, the waiting room was packed but they quickly took my vitals and got me into a room. In 2

2012 Holiday Update

2012-12-22T10:10:00.001-05:00

I had a couple of requests for a quick update on how things are going. My next visit to Dr Wigley at the Johns Hopkins Scleroderma Center is in February so the lack of updates are just do mostly to not having anything significant worth posting about. I've had no change for the better or worse since my last visit over the summer. I think those with scleroderma would usually consider no change

2012 Summer Update

2012-08-02T14:42:00.000-05:00

On Weds I had another quick trip down to Baltimore and a visit to the Johns Hopkins Scleroderma Center to see Dr Wigley. It was 3 months since my previous visit in May and 6 months since I went back on the medication to help suppress my immune system which seemed to have jumped into overdrive again. It is just around 6 years now that I found out I was initially diagnosed with Scleroderma.

2012 Spring Update

2012-05-05T07:54:00.000-05:00

It has been a busy 2 weeks with a trip to the Scleroderma Center at Johns Hopkins in Baltimore last week sandwiched between trips to Clemson University and Orlando, FL.My wife drove down with me this trip getting up very early to make the ride . After the preliminary weigh in and blood pressure I was off to the exam room where Dr Wigley came in and we discussed the past couple

2012 Scleroderma Winter Update

2012-01-25T18:48:00.002-05:00

Happy New Year to everyone! It has been about 6 months since my last update to you and I've just returned from a checkup at Johns Hopkins in Baltimore. It was an easy ride this morning down to Baltimore for a 10am visit. My first visit to John Hopkins was in Jan 2007 so it has been 5 years since I've been under Dr Wigley's magnificent care. I met with Dr Wigley and we reviewed some tests I had

2011 Scleroderma Summer Update

2011-07-20T20:22:00.001-05:00

Is it warm enough for everyone? It can't be too warm for me, but I imagine a nice cool fall day or a cool ocean breeze would be preferred by most. It has been 6 months since my last update in January and things are still going very well. In the spring of 2006 I had my first symptoms which turned out to be scleroderma which means I've passed the 5 year mark of having the disease. Today was my

2011 Scleroderma Winter Update

2011-01-19T20:58:00.002-05:00

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

Happy Holidays, Happy New Year & Dr Wigley Video

2011-01-04T18:13:00.003-05:00

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 http://

Summer 2010 Scleroderma Update

2010-07-21T20:39:00.003-05:00

Is it hot enough for everyone? I know in the northeast it has been plenty hot, but it can't really be too hot for me since I got sick so I'm loving it. I do understand though how endless 90 degree days can get tiring for some. Today was my 6 month checkup down at the Johns Hopkins Scleroderma Center in Baltimore. It is my first checkup since going off Cellcept, the immune system suppression drug

Off Cellcept for 6 Months

2010-06-13T09:20:00.002-05:00

Today is 6 months since I last visited Johns Hopkins and stopped taking any Cellcept. So far, so good. I've had no symptoms return since stopping the medication and my health has remained exactly the same as it has been. Well I guess there is one exception - I had to get glasses for the first time. It's related to getting old though and not with scleroderma.When the weather has been warm/hot, I

Winter 2010 Scleroderma Update

2010-01-13T18:40:00.002-05:00

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,

Always interest from doctors about scleroderma

2009-10-13T05:59:00.002-05:00

I have a stye in my eye which hasn't gone away so I went to a local doctor to get an antibiotic. Once she looked at my eye she started to write a prescription and the conversation turned to scleroderma. We spent much more time talking about scleroderma then about the stye in my eye. She was interested in the medications and how they helped, what changes occurred, etc. This is the same doctor's

Summer 2009 Update - Scleroderma Center Visit

2009-07-16T05:32:00.006-05:00

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

A quick post

2009-06-18T08:20:00.002-05:00

Someone asked why I stopped writing. No reason other then, at least as far as Scleroderma is concerned, I don't have much to say. Everything seems fine and I head back to Johns Hopkins Scleroderma Center in Baltimore in 1 month for a checkup with Dr Wigley. I'll have something to report then.So other then constant rain where I live and summer not yet showing up in full force and the school year

Back at work!

2009-04-15T05:54:00.002-05:00

Well, this week I started back at work. Being out of work for 2 months had nothing to do with Scleroderma, just the economy and bad decisions by executive management. But that is behind me and I'm looking forward to the new opportunities in the new job.Still waiting to hear when I'll come off cellcept. I'll probably contact Dr Wigley in a month or so to bring the subject up or maybe I'll just

CellCept Safety Information

2009-03-04T18:37:00.004-05:00

I received an email with the following that anyone that is on or considering going on CellCept should review. Nothing a doctor wouldn't explain to you anyway, but here it is for all to read.Roche Laboratories Inc., the makers of Cellcept (containing the active ingredient mycophenolate mofetil), has published a Medication Guide to provide important safety and efficacy information for patients.

Some minor updates

2009-02-18T11:08:00.002-05:00

Here are some minor updates since my January visit to Johns Hopkins.Had echo cardiogram and pulmonary function tests 2 weeks ago. I can't really tell if anything is good or bad with the echo cardiogram but I do get to watch my heart and valves on the screen. Since there's never been anything wrong in the past I doubt there's anything wrong now.The pulmonary function test (PFT) is a lot easier to

2009 update - Johns Hopkins visit

2009-01-06T22:50:00.003-05:00