Wednesday, January 25, 2012
2012 Scleroderma Winter Update
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Wednesday, July 20, 2011
2011 Scleroderma Summer Update
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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.
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?
Stay well everyone!
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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 http://lojosclero.blogspot.com . I happen to get blue/purple vs white fingers as shown in the video. The picture on Wikipedia at http://en.wikipedia.org/wiki/Raynaud'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.
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Wednesday, July 21, 2010
Summer 2010 Scleroderma Update
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Sunday, June 13, 2010
Off Cellcept for 6 Months
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.
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Wednesday, January 13, 2010
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!
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