Wednesday, July 20, 2011

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!


Anonymous said...

Thanks for the update. I too have scleroderma and am treated at JH but also have lung fibrosis. I am always interested to know how others are doing and it was good to know that a person may get off Protonix after a time. Elizabeth Wood

Christy said...

Hello. I was just diagnosed with scleroderma. I am 33 and have 8 small children. I am so terrified. Symptoms only started the beginning of August and it seems to all be happening very fast. I have 2 finger now entirely stiff and pretty much non functional and I can feel it happening in two more fingers. My right knee is tight and in my left jaw it is so painful and tight. It hurts into the left ear. I am so scared at how fast symptoms are coming on. Up to this point I have been in incredible health. My doctor has suggested trying methotrexate. But with his suggestion offered that has proven to be ineffective with scleroderma. So it has me wonder why try it? I have been reading up on things and am wondering about minocin. Have you tried or heard anything about it? I am wanting to be around for my kids to grow up and know who their mom is and the quick onset of symptoms is scaring me so much. My email address is (that is a zero before the six and not the letter o)

Thanks, Christy

Anonymous said...

Thanks for being so thorough in updating your blog! I'm a medical student currently finishing my rheumatology class, and I've been searching for info on scleroderma. Really appreciated being able to read about your experience as a patient. The internet is a wonderful thing. :)