Wednesday, June 18, 2008

June 2008 Update

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 in the morning – 10am or earlier. When we normally arrive, there’s maybe 2 other people there. Today’s appointment was for 11:40 and when I arrived, the waiting room was buzzing with activity and 15 or so folks there. Even with how busy they were when I got there, like every visit over the past 18 months, I’m treated by the office staff as if I’m the only one there. They know me by name, ask me how the ride down was, ask me how things are going (and where my wife was this morning), etc. They are a fantastic bunch of very caring people at the Johns Hopkins Scleroderma Center.

I had the standard weight/blood pressure/temperature readings and then we went into an exam room. One of the doctors helping out came in and asked me all the standard questions. This other doctor was one who I had seen last Sept. She asks how am I feeling, if anything changed (for better or worse), need any prescriptions (I needed a renewal for my monthly blood work), and tested me to rate my skin across my hands, arm, face, chest, back and legs. Since I know that how they rate me is the main question Dr Wigley asks them when he comes in, we discussed what she was going to say since I’m pretty accurate with rating and I remember what it was last time. That prep paid off for her since she nailed her rating with him.

Dr Wigley came in and was smiling as always. He asked my daughter if she wanted to be a doctor and she said a fashion designer. He said maybe she can design a Scleroderma shirt. We reviewed what we discussed with the other doctor. He then checked me out, asking what the other doctor thought and she was dead on for rating my skin. The only place where there’s anything worth noting is my right hand and my face. Otherwise, they consider my skin close enough to normal everywhere else. Still no wrinkles – the only benefit of scleroderma. The primary medication that I’m on (CellCept) was previously reduced from 6 a day to 4 a day. It is now reduced to 2 a day and what he considers moving to maintenance level. He also eliminated me taking Bactrim 3 times a week which is supposed to help prevent infection while I’m on the CellCept which suppresses my immune system.

When we were done with the exam, I told him it’s becoming a rather boring checkup and Dr Wigley said “I live for boring!”. For having a disease that can’t yet be cured, I’m probably as back to “normal” as I feel I could possibly be. A year ago, I couldn’t stand for the length of time it took to go food shopping and a year later I can walk 5 miles in a day without breaking a sweat. A year ago I would have to stop multiple times each direction driving to/from Baltimore and a year later I can drive straight through. A year ago when I moved my wrist or ankle you could feel and hear my tendon rub and a year later there’s no rub. A year ago, I couldn’t break 80 in golf and a year later I still can’t break 80 in golf, so I guess things are back to “normal”.

After the exam I gave 4 vials of blood for research and walked for 6 minutes where they test for breathing difficulties. Then I set up my next appointment for 6 months from now, so I shouldn’t need to head back to Baltimore until Jan 2009. Gas could be $5+ per gallon by then. Today’s visit marks 18 months since I’ve been under Dr Wigley’s care and in 18 months we’ve gone from a scary unknown very real life threatening disease to having things under control, no significant damage and I’ll probably live to be 100 if my kids or the NY Giants don’t kill me.

So that’s all I have for now. I’d like to thank all my friends and family for their constant encouragement and support. It’s been really tough at times but I’m hopeful that the worst is behind me and though it won’t go away (unless they come up with a cure), it’s just a nuisance I’ll be able to deal with. Have a fantastic summer!!


Anonymous said...

Hi, there
Glad things are going so well! I posted to you a few months ago. I am a 43-yo mom of 2 and also a patient of Dr. W. (I call him Wiggles!) We have almost the same story...18 months ago I was very very sick, very impaired, getting worse every day. Now, since I have been on Cellcept (4 per day) since last Halloween, I have my life back and this whole thing is pretty much a non-issue. Hooray for both of us!


april05 said...

Hi - great news about your visit. I especially liked your sense of humor about the golf game. I go to Wigley too and feel the same way as you and Lauren..Hi Lauren - haven't talked to you in a long time. I have actually been off cellcept for a year and they are thinking about putting me back on. I wish you all well....

Danielle said...

Thank you for your blog - it's put my mind at ease while I wait for repeat blood tests to come back. I do have two questions, does the cycle end and stay gone for awhile, or is it a never-ending start and stop of the 18-24 month cycle?? And, did you test positive on any of the ANA tests?

Thank you!

Scleroderma Blog said...

Thanks everyone.

Lauren - Yes, "Wiggles" is the man!!

April - Why are they putting you back on cellcept? Is there a change? I've had no adverse reactions to any of the medications they have given me so I'm in no rush to stop any of them if they are keeping things in check.

Danielle - My understanding is that the disease has an active state where it's doing damage and then it plateaus. For some, it stays level and for some, it improves slightly. The goal with getting on the medication was, according to what they've told me, to get the disease to plateau and stop being active and doing damage. is the post after my first visit where everything was fresh in my mind. I tested positive for ANA when I first noticed the problem. When I tested positive, the regular doctor recommended I see a rheumatologist. Some of the posts at the beginning of the blog at go into some of the details.

Young Creations said...

Thank you so much for your blog. My sister(40) was just diagnosed with schlerodrema We are trykng to get all the information that we can. She is currently taking methodrextrate and Humira. Iappreciate your information. She is seeing a specialist at UCLA as we live in Southern California

Jennifer said...

I found your blog 2 nights ago and keep coming back to reread it. I am a 35 year old female also from the northeast with children. I was diagnosed with scleroderma this past spring and can't tell you how much comfort your words have given me. I have felt so alone with this "new reality" and have been on such a roller coaster of emotions. Our stories are eerily similar in terms of detection, symptoms and even treatment. (Although not on CellCept, I just began taking Azathioprine/Imuran). I'm hoping to notice some changes by Christmas. If not, I may be seeking out your amazing doctor! Please keep writing. Your successes give me hope.