tag:blogger.com,1999:blog-20266058100854140942009-07-16T05:44:17.581-05:00Scleroderma is a chronic autoimmune disorder that can cause tightening and thickening of the skin, thickening of blood vessels, and damage to internal organs.Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.comBlogger45125tag:blogger.com,1999:blog-2026605810085414094.post-6964407272884642752009-07-16T05:32:00.006-05:002009-07-16T05:44:17.719-05:00

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

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.com0tag:blogger.com,1999:blog-2026605810085414094.post-50084822812696163442009-06-18T08:20:00.002-05:002009-06-18T08:22:49.988-05:00

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

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.com6tag:blogger.com,1999:blog-2026605810085414094.post-82911139461329338672009-04-15T05:54:00.002-05:002009-04-15T05:57:28.540-05:00

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

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.com7tag:blogger.com,1999:blog-2026605810085414094.post-19438223300101224642009-03-04T18:37:00.004-05:002009-03-04T18:42:28.225-05:00

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.

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.com0tag:blogger.com,1999:blog-2026605810085414094.post-51349726225002620612009-02-18T11:08:00.002-05:002009-02-18T11:18:39.800-05:00

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

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.com2tag:blogger.com,1999:blog-2026605810085414094.post-64891388328632857652009-01-06T22:50:00.003-05:002009-01-06T22:54:26.982-05:00

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Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.com5tag:blogger.com,1999:blog-2026605810085414094.post-12950169301582369982008-12-24T20:49:00.003-05:002008-12-24T20:51:17.313-05:00

I'd like to wish everyone a happy and joyous holiday season. I'd like to also wish you a healthy and prosperous 2009. I know we can all use a lot of both next year.

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.com1tag:blogger.com,1999:blog-2026605810085414094.post-41799247200142579902008-12-05T07:02:00.004-05:002008-12-05T07:14:48.574-05:00

I've read a few articles about a newer drug with the brand name of Gleevec. Originally used to address cancer such as leukemia, it is now being tested with other diseases with scleroderma being one I (and others that follow this blog) care about.The latest article at http://www.oregonlive.com/business/index.ssf?/base/business/1228263912108410.xml&coll=7 with the relevant portions copied here:"

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.com0tag:blogger.com,1999:blog-2026605810085414094.post-16276827853670798902008-10-10T17:50:00.003-05:002008-10-10T18:01:24.829-05:00

A friend of mine sent me an article on Scleroderma and Stem Cells. It is on the MSNBC at http://www.msnbc.msn.com/id/26841494/. Though the article is primarily about nuking the immune system and letting it regenerate itself, it has the same old stats in it.So I replied back to my friend with 300k with the disease. 1/3rd with systemic (like me). 50% die in 5 years. Any other good news you want to

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.com2tag:blogger.com,1999:blog-2026605810085414094.post-7516121339143234812008-09-22T21:28:00.003-05:002008-09-22T21:41:40.842-05:00

Summer has come and gone. I was able to play golf 3 times in August while I was on vacation. The 1st time was with my older daughter. I played as if I hadn't stopped playing. We only played 9 holes and I shot a 42. Could have been a 40 if I made 2 putts I should have made. The 2nd round I ended up going out with the club champion. We played from the back tees. He was a pleasure to watch hit, but

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.com0tag:blogger.com,1999:blog-2026605810085414094.post-32429820408937986282008-08-03T15:58:00.002-05:002008-08-03T16:03:22.270-05:00

My last post has seen a bunch of comments made and in some cases, I'd like to contact those that have posted, but typically there's no way to do that for folks that comment. I still want to remain rather anonymous on the blog for a few reasons, but if you'd like to contact me, you can email at sclerodermablog@gmail.com and I'll personally respond.

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.com0tag:blogger.com,1999:blog-2026605810085414094.post-48769440548926973352008-06-18T19:47:00.003-05:002008-06-18T19:54:20.213-05:00

It’s been just over 3 months since my last visit to Baltimore and my last update email. This morning, with one of my daughters as my co-pilot (she skipped a ½ day of school), we set off for Baltimore and my next checkup. For an executive summary, the worst thing all day was paying $80 for gas for the round trip to Baltimore. Otherwise, things are going very well.Normally my appointments are early

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.com6tag:blogger.com,1999:blog-2026605810085414094.post-34952850603442115622008-03-04T20:06:00.002-05:002008-03-04T20:09:11.308-05:00

Hey everyone! It's been 3 months since my last update and we're back from our latest visit with Dr Wigley at the Johns Hopkins Scleroderma Center in Baltimore. The visit went very well.A year ago (Dec 2006), between Christmas and New Years, I tried to go skiing with my family and friends but it just wasn't possible. It was painful to just have the boots on let alone ski. Well exactly one year

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.com2tag:blogger.com,1999:blog-2026605810085414094.post-33394373717252817372008-01-04T07:11:00.000-05:002008-01-04T07:17:02.420-05:00

Today is exactly one year from my first multi-hour visit with Dr Wigley at the Scleroderma Center at Johns Hopkins in Baltimore. What a long year it has been. The week before my first visit, as I do with my family every year, we went on our annual ski trip. I could barely get my ski boots on and after 1 run down the mountain, I had to admit defeat and give in to the pain. Though my family enjoyed

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.com0tag:blogger.com,1999:blog-2026605810085414094.post-84643887934917788862007-12-06T21:08:00.000-05:002007-12-06T21:12:39.811-05:00

Our latest visit to the Scleroderma Center at Johns Hopkins in Baltimore was today (Dec 5th, 2007). We set out before the sun was up and arrived in Baltimore early. They checked me in, took all my vitals and in in a couple of minutes Dr Wigley came in. For those that saw my last post, you know that Dr Wigley was on the Today Show a month ago with Bob Saget discussing scleroderma. When he came in,

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.com0tag:blogger.com,1999:blog-2026605810085414094.post-7575937677716105582007-11-07T21:56:00.000-05:002007-11-09T06:52:15.828-05:00

I'm sending out an email in between checkups because Dr Wigley who I go to at Johns Hopkins was on the Today Show on Tuesday 11/6 with the comedian Bob Saget who is an advocate for scleroderma. Bob's sister had the disease. The video clip of the segment is on the Today Show web site at the Today Show Video. The video is about 6.5 minutes long. Hopefully the video stays up at least long enough

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.com0tag:blogger.com,1999:blog-2026605810085414094.post-48888288581330939152007-10-24T18:48:00.000-05:002007-10-24T18:53:47.809-05:00

Starting last Weds (10/17), I felt some fibrosis in my left arm. On Sunday, my hips started hurting. The fibrosis in my left arm is much better, but my hips are still "rubbing" a lot. When I walk, if I put my hands on my hips, I can feel the rubbing. I can feel it without doing that but I could show my wife what was going on.I emailed Dr Wigley at the Scleroderma Center at Johns Hopkins and he

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.com1tag:blogger.com,1999:blog-2026605810085414094.post-52240838024308464442007-09-20T22:15:00.000-05:002007-09-20T22:20:31.913-05:00

Wednesday my wife and I woke up early and set off for another visit to Johns Hopkins Scleroderma Center to see Dr Wigley. On the way down, we heard on the radio that it was International Talk Like A Pirate Day - http://news.yahoo.com/s/nm/20070918/od_nm/pirates1_dc . Maybe everyone should put this important day on their calendars for next year.Every time we go in the exam room, Dr Wigley has a

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.com0tag:blogger.com,1999:blog-2026605810085414094.post-39614711522728677972007-08-02T05:37:00.000-05:002007-08-02T05:39:29.061-05:00

Yesterday was my mid-summer checkup at the Scleroderma Center in Baltimore. My wife and I woke up early (4:30am) and drove down for the 9:50am appointment. The checkup went very well. Dr Wigley is pleased with how things are progressing. No additional damage from the disease seems to have occurred and things appear stable since my last appointment and even very minor improvement in some areas.

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.com0tag:blogger.com,1999:blog-2026605810085414094.post-83926172967251982522007-07-27T20:38:00.000-05:002007-07-27T20:43:40.461-05:00

Almost time for another visit to see Dr Wigley at the Scleroderma Center in Baltimore. Time for a 2 month check up. I actually look forward to these visits. Maybe it's the hope that when I get there, he tells me he found the magical cure.I just read a short article that is probably one of the best written articles on Scleroderma that I've read. It's from a local news station and it's available on

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.com0tag:blogger.com,1999:blog-2026605810085414094.post-40699204679289678902007-06-06T20:57:00.001-05:002007-06-06T21:01:48.870-05:00

Today was another checkup visit for me at Johns Hopkins It's been about 8 weeks since my last visit. My wife had training at work so she wasn't able to go with me. I woke up around 4:30, showered and drove down for a morning appointment. There's so much less traffic at 5am in the morning. I guess that's because the sane people are still asleep.Everything at this checkup was very routine. They

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.com0tag:blogger.com,1999:blog-2026605810085414094.post-84336914824594407872007-05-14T05:49:00.000-05:002007-05-14T05:55:50.922-05:00

Last Thursday my legs felt horrible. It was like I was lifting 1000 lbs every time I took a step. Then on Friday, the exact opposite. My legs felt great. What happened between Thurs & Fri?Sat and Sun felt good too. Last night around 10pm when we hopped into bed to watch some TV, I noticed that neither of my forearms had the "creaky door" fibrosis that I've had for months now. I wake up in the

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.com0tag:blogger.com,1999:blog-2026605810085414094.post-80291569300047860492007-04-21T17:19:00.000-05:002007-04-21T17:21:29.640-05:00

It is nice to experience the first day of spring (no matter what the calendar says). It's been cool/cold/rainy/windy for way too long. I don't know it felt like it was in the 60's. At least that would have been a sign of spring. Today it hit the mid 70's and is gorgeous out. It is nice to not have to wear gloves and a coat.Here's to more of this great weather!

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.com0tag:blogger.com,1999:blog-2026605810085414094.post-87560430438602091142007-04-16T19:46:00.000-05:002007-04-16T19:59:14.667-05:00

In previous posts, I mentioned how expensive at least 1 of the medications I'm on costs. Good think I have a prescription plan. What is inconvenient is that my prescription plan requires us to mail in to fulfill prescriptions that go past 3 initial months. That means a new prescription for each medication needs to be obtained. But what used to be a simple call to the drug store now requires

Scleroderma Bloghttp://www.blogger.com/profile/06757088123877348789noreply@blogger.com0tag:blogger.com,1999:blog-2026605810085414094.post-10567522559745197112007-04-10T08:21:00.000-05:002007-04-10T08:26:11.825-05:00

Start the end of last week and into the weekend I got a good head cold. Stuffy nose, post nasal drip, etc.Called down to Johns Hopkins to see what I could take since this is the first time with any problem since I started the heavier duty meds in January. Dr Wigley replied back that I could take an over the counter medication but be aware that meds like Sudafed will aggravate the Reynaud's.My

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