Thursday, February 7, 2013

2013 Winter Update

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 minutes Dr Wigley came in sporting a big smile as he usually does and sat down for a chat. We discussed the last few months since I was there in August and how I was feeling. We went through the list & dosage of medications, how my breathing was etc. I then got on the exam table and he checked out my skin which he was happy to see was flexible in all but a few places. He listened to my lungs and heart and checked out my range of movement and if I had any pain which I didn't.

I've been back on cellcept, the drug which is suppressing my immune system from going a bit bonkers, for 13 months (Jan 2012) and it seems to have again done its job of making the scleroderma calm down and not cause any further problems and damage. I'm currently taking 6 pills a day and I will start to take 5 pills daily for the next 6 weeks. After 6 weeks I will cut out a second pill and reduce the medication to 4 pills a day until I head back to see him in 6 months.

I gave half a dozen vials of blood, some of which will be used for research, then made my next appointment and hit the road back home. Walking out with some tasty Maryland crab cakes would have been great but I'll take a lower dosage of the medication as a nice parting gift.

Well that wraps up another update. If anything exciting happens before my next scheduled update I will send along a quick note. Hopefully spring and warmer weather will be just around the corner and old man winter will go easy on us. Until then, stay happy and stay well!!

4 comments:

Anonymous said...

Hi. I am very new to this disease and have foubd your story to be one of the few that seemed positive. As a man with this problem, I feel even more alone, so your story was especially helpful for me. I would reall like to speak to you in more detail if that would be possible.
Thanks again!

Scleroderma Blog said...

Please send me an email at sclerodermablog@gmail.com and I will respond.

Anonymous said...

Have you tried a gluten-free diet? My mother had a severe case of scleroderma for over 10 years. She went gluten-free, and all of her symptoms disappeared. It takes about a month to start noticing improvement. I recommend trying it if you haven't yet!

Lynn Testa said...

Hi, I hope I can comment on the third comment here as it's Dec 2013.. My husband is 60 & diagnosed with systemic scleroderma in June.. He's on cell cept /MMF and methotrexate, doing well..still trying to subside progression of the disease. His symptoms from GAVE, scleroderma with esophageal tightening and breathlessness are worst… I have fibromyalgia and palm psoriasis, with gerd & i bs so we both have been gluten free for the most part, and no preservatives, packaged foods, eating green, and smaller amounts, and it seems to be helping.. Of course traveling 3 weeks to a family wedding & being in Cold New England, threw us off a bit! But now getting back into the gluten free & healthy diet and exercise. Only other thing I can offer is the weather change, we moved to FL two years ago, makes our conditions much better, and our lives of course!!!