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!


epasen said...

I totally feel you there: " 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." I was just on methotrexate myself for a while until me and my doc decided to quit it: We both believe I'll manage just perfectly without it.

Hopefully this will be healthier year for both of us than the one before.. Remission is the word for 2010!

All the best,
Emmi from Living with Sclero

Linda said...

I just found your blog and my heart goes out to you. In 1991 I was diagnosed with systemic scleroderma. All my internal organs we affected and it was all very scary.
I found out I had it when I was tired all the time and one December I was walking on a beach in Maine and it was unusually warm (about 55) and I could not get warm.
So that is how I found out. But I just wanted to say, I went into an experimental drug program at the time with gamma interferon and at this time I am disease free. There is a lot more that goes with this story because trust me it was not just a breeze. I had numerous complications as the disease was progressing really fast and no one expected me to live very long.
But my reason for writing is to say, never give up hope and I do hope that the New Year brings you good news.

butterfly said...

I have an appointment March 17th with Dr. Wigley whom I have been seeing now for 17 years. It will be a busy one: PFT, EKG and all day affair. I seem to be in remission, so I need to remember not to turn around in a full circle, just halfway.
I go along REMISSION in 2010.

Doris (Long time Survivor of Scleroderma) and PAH since 2005

Holly said...

Thanks for your blog. I always enjoy reading it.
Scleroderma Patient

cheryl said...

I just found your blog while researching cellcept. I was diagnosed with scleroderma in October of 09. I am a 46 year old mother of 4. As I read your blog from the start I felt like I was reading my own story. I am experiencing the loss of strength and mobility in my hands and feet, pain in my arms and legs, as well as skin tightening. My rheumatologist recently suggested cellcept, and is consulting with a Dr. I am seeing at a Boston Scleroderma clinic. Your blog was incredibly helpful, and comforting. Here is hoping for your continued improvement!


Patty Mooney said...

Thanks for sharing your important story! I hope you will continue to post some more blogs about your progress!

janis lammers said...

hi sorry you have scleroderma, i too have it diagnosed 17 years. actually mine is CREST but they lump us all together. with a chronic disease you also get beautiful gifts in life as i'm sure you've experienced. i am a bit concerned about your fingers getting cold, there is research that the more of these cold episodes, the more severe your disease prognosis. they treat the cold fingers with a low dose blood pressure pill. preventive as opposed to symptomatic. i fought this also but am doing well and wish you the same.

alisa said...

Thank you for your blog. I have just been diagnosed with CNS scleroderma. I don't have many problems with my skin, but my brain and other organs have been affected. I'm just starting this new adventure and your blog brought me a lot of hope. Thank you!