Wednesday, January 19, 2011

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!

7 comments:

Anonymous said...

Thanks for posting the video. My Raynaud's is driving me crazy.

John said...

Hi, I just happened upon your blog in searching for information relevant to my daughter's condition. She has Mixed Connective Tissue Disease (MCTD). MCTD is like a rheumatological 3 for 1 special in that it has components of Scleroderma, Lupus, and Rheumatoid Arthritis. I'm curious how you were able to discontinue the Cellcept. Are you in remission? My daughter has been on Cellcept for 2.5 years. She takes 3000mg per day in two divided doses of 1500mg each. It sounds like the Cellcept has worked wonders for you. I'm withholding judgment until such time that she achieves remission or her condition improves. Thank you for having this blog and I look forward to your reply.

Sincerely,
John M.

P.S. My daughter is now 15 but was diagnosed with MCTD seven years ago when she was 8.

Scleroderma Blog said...

I would consider myself in remission. The cellcept suppressed my immune system enough that it appears that the scleroderma is no longer active and doing any harm. Cellcept didn't do anything to address any damage that was caused while it was active. After I went about 1 year with no additional signs of it being active, the dosage was reduced and then completely stopped. For me it was about 6-9 months after starting cellcept before I really noticed a significant change. The next 6 months saw further symptoms diminish.

At the peak I was taking 6 pills a day for a total of 3000mg per day like your daughter. I was on that dosage for about 1 year and then reduced it down before eventually just stopping it. I've been lucky that since stopping it completely I've had no symptoms return.

I wish your daughter all the luck in the world!

John said...

Thank you for the reply and the well wishes for my daughter. Your story has made me hopeful that my daughter can also achieve similar results to what you have experienced. I look forward to future postings on your progress.

Keep getting better!

Sincerely,
John

Amy H. said...

Hi,
I am going through the process of figuring out do I have or do I not. Lab tests are positive but so far very little in the way of symptoms, but hx. of pulmonary and heart issues with my mom who passed at 62. Question, depending on how this next meeting goes I am looking at Hopkins vs. Georgetown vs NYC for further eval. So far I have limited skin involvement so likely will be more organ based and was told Dr. Wiggley is more for skin positive cases if that makes sense. Any opinion? Did you see other specialists before you decided on him?
Thanks,
amy

Scleroderma Blog said...

I'm not sure why Dr Wigley or the Scleroderma Center at Johns Hopkins would be labeled as primarily focusing on patients with skin involvement. I don't think that is the case. I think 100% of scleroderma patients have some form of skin involvement - I don't remember reading otherwise.

I did not see any other specialists before going to Dr Wigley. My rheumatologist diagnosed it pretty quickly and recommended John Hopkins and 1 or 2 other facilities specializing in scleroderma, 1 of which would definitely be closer and more convenient but I quickly picked Dr Wigley at Johns Hopkins. I don't even know if my wife and I left the rheumatologist's office after first being diagnosed before deciding JH would be where we would start.

If I recall, besides Johns Hopkins, I was given Rutgers in NJ and Univ of Pittsburgh in PA as the 2 other locations to start with. What facility in NYC was given to you as a recommendation?

Jalee85 said...

I am currently diagnosed with UCTD right now a lupus/scleroderma/sjorgens mixture. I have sclerodermic changes in my nail folds. Here's some pics does it look similar to others. I was told my nailfold capillary changes were definately scleroderma.
http://www.whoneedsdoctors.org/2011/05/finger-nail-capillary-time-line.html