2012 Scleroderma Winter Update

Happy New Year to everyone! It has been about 6 months since my last update to you and I've just returned from a checkup at Johns Hopkins in Baltimore. It was an easy ride this morning down to Baltimore for a 10am visit. My first visit to John Hopkins was in Jan 2007 so it has been 5 years since I've been under Dr Wigley's magnificent care.

I met with Dr Wigley and we reviewed some tests I had done in November. One test is an echo cardiogram which is essentially a sonogram of the heart. The test shows everything is normal. The other test was a Pulmonary Function Test (PFT) that primarily measures lung capacity and the results were the same or slightly better than the previous test, so inside things are looking good.

I described to Dr Wigley how I've been feeling, which hasn't been great since about mid November. Nothing terrible, but just not as good as I have been feeling. I don't react a lot to how I feel on any specific day because I feel different every day, and even multiple times within each day. A single odd feeling day or two isn't much to me and never worth mentioning. As one example, this past weekend, my left arm felt like I had sunburn and someone was rubbing it very hard, and the skin on the upper half of my torso was very tight. Then on Monday, those feelings were completely gone. So with my description of how I've been feeling, Dr Wigley examined me and concluded that there's been a slight change from my past visits. We discussed the options and we both felt that going back on Cellcept made the most sense. Cellcept is the medication I was taking from Jan 2007 through Jan 2010 to suppress my immune system from turning on me. I had stopped the Cellcept medication in Jan 2010, which is 2 years ago this month. It is like playing whack-a-mole with my immune system and we just need to beat it into submission again.

After the exam they took 8 vials of blood from me for evaluation and research. As I got in my car, I noticed a man walking toward me from across the parking lot with newspapers under his arm and it was Ted Koppel. I didn't stop him but I waited until he got in his car and he was driving a BMW SUV with NY plates. Not sure if he was at JH for himself or visiting someone he knows. My next visit to Johns Hopkins will be in 3 months at the end of April and we'll see how things are then.

I'm a Giant fan and season ticket holder, so hopefully in 1 1/2 weeks, we'll be able to celebrate another Super Bowl win! If they don't beat the Patriots, they still went farther this year than I had expected. It's been an exciting few weeks to be a Giant's fan with 1 more game to go. Let's go Big Blue!!

I'll get back to you all in a couple months with an update on how things are progressing. Hopefully we won't have too much snow shoveling to do between now and then!

Stay healthy!

2011 Scleroderma Summer Update

Is it warm enough for everyone? It can't be too warm for me, but I imagine a nice cool fall day or a cool ocean breeze would be preferred by most. It has been 6 months since my last update in January and things are still going very well. In the spring of 2006 I had my first symptoms which turned out to be scleroderma which means I've passed the 5 year mark of having the disease. Today was my mid-year check-up down at Johns Hopkins Scleroderma Center in Baltimore, MD and here's the uneventful update on my condition.

I went solo this trip and arrived around 9:30 for my 9:50am appt. I noticed on the wall in the waiting area a set of pictures representing all the doctors working there now. When I had my first trip in Jan 2007 it was Dr Wigley and one other doctor and I think that was it. The pictures on the wall indicated more like 10 doctors now active in treating patients. I'm sure they are all fine doctors but I know I have the best with Dr Wigley.

I had my vitals taken and I waited for Dr Wigley to come in. He opened the door with a big smile and we chatted for a bit before getting down to business. We reviewed my medications, one of which we stopped after my last visit. I haven't experienced any downsides yet from stopping the medication, Protonix, used to prevent acid reflux. I was on the medication in the first place because one of the areas of damage that occurred was with my esophagus but it seems at least for now, I can get away without medication. That means I'm down to taking 2 drugs, one of which is ibuprofen and the other for reynauds which I still experience. Reynauds causes my fingers/hands to turn purple as my body determines it needs more blood to keep my core temperature down. During these brutally hot days, it can still kick in such as when I walk into a cold air conditioned location, but it has been very quiet since about June. So for now I'll keeping taking those 2 medications.

Dr Wigley listened to my heart and lungs and checked out my skin across my body. Everything is the same as it has been which is ok on my hands and very good everywhere else. When he was done checking me out, I asked if anything new was going on with results from studies on reducing fibrosis (hardening of the tendons) or breaking down the collagen which is what would help the stiffness in my hands. He filled me in and indicated there are lots of tests underway but nothing yet that is consistently showing positive results or where the possible side effects would be worth taking a chance on someone like me where it's not impacting my everyday life.

He gave me prescriptions to have an echo cardiogram (ultrasound of my heart) and a pulmonary function test to check out my lungs to make sure everything inside is still as good as it was the last time I had those tests. He then sent me off to the Phlebotomist (fancy name for the gal who pokes me with a needle) to give 6 vials of blood for analysis and research. I made my next appointment for the end of January and set off for home. Like I said at the start, uneventful, and I'll gladly take uneventful.

I receive some comments here as well of a fair amount of direct emails, so don't be shy and if you have any questions or want to make a comment, please go ahead. I'll absolutely take the time to answer every email I receive.

Enjoy the rest of the summer. Have fun and stay healthy!

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.

My appointment was at 10am and the waiting room was pretty busy, but I didn't wait long. Blood pressure and weight are fine and where they should be. Dr Wigley came in with a big smile and he commented how I didn't have any of my gals with me this visit. I told him over the summer for the next visit someone will probably tag along. I also found out that Dr Wigley was interviewed again on The Today show to discuss Raynaud's so I asked him about it and he said the interview was fine, but he was disappointed that there wasn't enough time to talk about the new treatments. I have Raynaud's as part of Scleroderma. My fingers turn purple, not white as discussed in the video. You can see the short video clip of the interview here - http://www.msnbc.msn.com/id/21134540/vp/40779682#40779682

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?

For me this Thursday (tomorrow as I write this) will be my last day at my current company and on Friday I start at a company in NJ. I had a terrific team where I was and we did fantastic work, but it is a better opportunity at the new company so I'm making the move. I'll be back in NJ with about half the commute I've been taking for a few years..

That about wraps it up for this latest update. Nothing very exciting, which I guess is a good thing. I'll send out another update the end of July, so we just need to get past a cold & snowy winter and a rainy spring and it will be summer before we all know it.

Stay well everyone!

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.

The video - http://www.msnbc.msn.com/id/21134540/vp/40779682#40779682

Until then, stay healthy!

Summer 2010 Scleroderma Update

Is it hot enough for everyone? I know in the northeast it has been plenty hot, but it can't really be too hot for me since I got sick so I'm loving it. I do understand though how endless 90 degree days can get tiring for some. Today was my 6 month checkup down at the Johns Hopkins Scleroderma Center in Baltimore. It is my first checkup since going off Cellcept, the immune system suppression drug I was on for 3 years (Jan 2007 thu Jan 2010).

My older daughter decided to head down with me so I woke her up at 5:45am. She doesn't need much time to get ready and we left at 6am and got a couple of bagels and coffee for the ride down. There wasn't any traffic at all and we got there 1 hour early so we drove around a bit. After checking in they had me pop on the scale and check my blood & temp and all is normal. After a short wait, Dr Wigley came in, smiling and happy as usual. We quickly reviewed my dwindling list of medications and discussed how I've been feeling over the past 6 months since getting off cellcept. Nothing has changed - which is absolutely perfect! Actually, I did have one change and that is I needed to get glasses for the first time in my life. No one seems to think that needing glasses has anything to do with Scleroderma and its just from getting old(er).

Dr Wigley checked out the skin on my arms and legs and said it's completely normal and there's no indication I ever had scleroderma. Not so, at least yet, with my hands but it isn't bad and isn't getting any worse. We then talked about what comes next now that it seems the initial active part of the disease is over with. There are 3 main areas of concern and they are the lungs, the heart and the digestive system. Now those 3 wouldn't be my top picks for things I'd like to have to worry about. I'd be a bit happier if they were more like your appendix, body hair or tonsils but no one offered me a choice. Based on my lung tests, Dr Wigley said it doesn't appear that there was any damage (scarring) to my lungs caused by the disease so it's likely not something that would now occur. For my heart, he said I should get an annual echocardiogram to make sure there continues to be no damage to my heart. Last is the digestive system where other then some minor damage to my esophagus very early on, everything else has been fine. Just things to stay on top of but nothing to worry about.

I then asked him, jokingly, if I'm done having to drive 6+ hours for a 1 hour visit. He said he'd miss not seeing me every 6 months so I should keep coming back. We then said goodbye to the fabulous Dr Wigley and waited for a phlebotomist (fancy name for a lab tech) to come draw 4 large vials of blood for research. At the reception area I made an appointment for mid January for my next checkup and we were done. My daughter then asked if we could go get crab cakes at G&M. They make the world's best crab cakes with huge chunks of crab just barely held together with a minimum of breading. So we drove 15 mins to get some for lunch and bring home for dinner. http://www.gandmcrabcakes.com/ if you are ever in Baltimore. You can take out or sit down in their regular restaurant. Once you eat these, every other crab cake will be 2nd at best. We then drove home with just a little traffic here or there.

That's all I have for now. Enjoy the rest of your summer, be safe and stay healthy!

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.

When the weather has been warm/hot, I can't get enough of the heat. We've had a few real hot days and while everyone else (my wife included) complains, I'm just loving it!

I head back to see Dr Wigley in just over a month and will report back then. Enjoy the start of the summer.

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!