A quick post

Someone asked why I stopped writing. No reason other then, at least as far as Scleroderma is concerned, I don't have much to say. Everything seems fine and I head back to Johns Hopkins Scleroderma Center in Baltimore in 1 month for a checkup with Dr Wigley. I'll have something to report then.

So other then constant rain where I live and summer not yet showing up in full force and the school year coming to a close, it's been quiet. But everything is fine (health wise) so I haven't updated the blog much. But I'm still here, still have Scleroderma, and I will continue to post.

Stay well.

Back at work!

Well, this week I started back at work. Being out of work for 2 months had nothing to do with Scleroderma, just the economy and bad decisions by executive management. But that is behind me and I'm looking forward to the new opportunities in the new job.

Still waiting to hear when I'll come off cellcept. I'll probably contact Dr Wigley in a month or so to bring the subject up or maybe I'll just wait until July when I have my next visit.

Everything remains stable and well as far as I can tell. I really tried to make sure I didn't get too stressed out over these past 2 months, as stress seems to be a big factor in flare ups and I didn't want to find out if that theory was right or not.

All the best!

CellCept Safety Information

I received an email with the following that anyone that is on or considering going on CellCept should review. Nothing a doctor wouldn't explain to you anyway, but here it is for all to read.

Roche Laboratories Inc., the makers of Cellcept (containing the active ingredient mycophenolate mofetil), has published a Medication Guide to provide important safety and efficacy information for patients. This Medication Guide has been developed together with the FDA. The FDA has also required a Medication Guide for mycophenolic acid, marketed as Myfortic by Novartis.

To view the Cellcept Medication Guide, please visit:
http://www.fda.gov/medwatch/safety/2009/CellCept_MedGuide.pdf

Some minor updates

Here are some minor updates since my January visit to Johns Hopkins.

Had echo cardiogram and pulmonary function tests 2 weeks ago. I can't really tell if anything is good or bad with the echo cardiogram but I do get to watch my heart and valves on the screen. Since there's never been anything wrong in the past I doubt there's anything wrong now.

The pulmonary function test (PFT) is a lot easier to measure and compare against past tests. This time all numbers were as good or better then my last test. I always tell the tech administering the test that I'd really would have liked to have a baseline from before I was diagnosed to see how it compares to now. But without that, as a comparison against previous tests and the baseline numbers things are either above their baseline or better then previous tests, none of which themselves were bad.

Once Dr Wigley at Johns Hopkins gets the results of the tests and can review them, I'd expect a call from him to tell me to stop taking the cellcept. I'll post back when that happens.

In not so good news, I was let go from my job last week. They are "restructuring" and they have eliminated the management levels (myself and my managers) and will have the business team manage the staff which will remain. Not a great time to be let go but I'm confident I will find another opportunity. I feel bad for those on my staff which remain, as the business isn't capable of successfully managing what I did. How do I know? Well that was what it was like before I showed up and it was a disaster. Maybe my managers and I did too good a job with getting everything in order and they figured they could take it over again? My staff that remains has already contacted me that they will immediately start to look. I wish them all the best.

So that's my brief update and if anything changes I'll post back.

2009 update - Johns Hopkins visit

Happy New Year all !!! I hope you all had a happy holiday too. Today was my latest visit to the Johns Hopkins Scleroderma Center in Baltimore, MD. I left early this morning and got there in plenty of time for my 10am appointment. My blood pressure and weight are all normal. Too bad I’m sick or I’d be a heck of a healthy 45 year old guy. Dr Wigley came in and we chatted about the past 6 months since my last visit. We reviewed the medication I’m on, any changes in my condition (skin, breathing, pain, etc). For everything he asked, he checked off “normal” on his long checklist.

Dr Wigley then examined me from head to toe checking the skin on my fingers, hands, arms, face, chest, abdomen, legs and feet. He said everything looks fabulous. After I got dressed, he came back in and his first question to me was “What do you think about stopping the CellCept?”. That’s the medication that is suppressing my immune system so it doesn’t over produce collagen, which is what was happening and the cause of all the damage. I didn’t answer right away and he quickly jumped in with “I know it’s a pretty tough decision to stop taking something which has helped so much.” I asked what is the downside of continuing taking it and he indicated there’s a higher risk of some cancers. The immune system, which we’re suppressing with the CellCept is also responsible for good things, like preventing cancer. He indicated that about 80% of the folks that stop taking the medication do not see any additional flare ups, while 20% that stop the medication do see some flare up. To put it differently, from this patient’s viewpoint, there’s a 1 in 5 chance I could get extremely sick again. So what we decided was to get a Pulmonary Function Test (PFT) to check my lungs as well as a catscan to check for pulmonary hypertension, both which I do at least once a year. If they come back normal (and all previous times they have), we’ll discuss either stopping the medication or going to ½ the dosage I have now, which is 1 pill twice a day (down from 3 pills twice a day at peak). He indicated that we’ll make the decision after the winter is over.

After we finished up, I had to walk for 6 minutes for one of the research studies they are doing. They check your breathing after the 6 minutes. The woman indicated I walk the farthest of all her patients. She tracks how many “laps” I do. I asked her how far and she told me the number of laps. So then I said it was about 10 yards (golf paces) and each lap is a back and forth for 20 yards. She looked at me oddly (nothing new there) that I would be able to measure distance in yards by taking steps. I guess she never played golf.

So physically, it seems I’m doing great. Of course I still have the damage done during the first year before things started to calm down, and I’m hopeful that over time that might improve on its own or some medication is found to help the body repair itself. We’ll just have to see. I’m not thrilled with stopping the medication, and that’s coming from someone that never took medication for anything before all this started. So we’ll see how that goes. I head back there on July 15^th for my next appointment. Even the receptionist commented on how well everything is going and they don’t get to see me again for 6 months.

As for the family, we had a tremendous holiday. My wife's parents were up from NC for Christmas and we spent a lot of fun time with them and her brother’s and sister’s families. From December 29^th through January 3^rd, we were up at Mount Snow in Vermont. My wife, my girls and I and our good friends had a blast skiing for 4 days. The temps were pretty normal (teens or twenties) except for New Years Day when it was -32 degrees Fahrenheit at the summit!!! It was the coldest I think I was ever outside for. I only skied two runs before calling it quits that day. The other days we skied for a much longer time. Hopefully the Giants can win 3 more games to finish out the season. That will hopefully mean 2 more home games to sit through in the cold, but when they win, it always seems to be a bit warmer.

Stay well all and Go Giants!

Happy Holidays and Happy New Year

I'd like to wish everyone a happy and joyous holiday season. I'd like to also wish you a healthy and prosperous 2009. I know we can all use a lot of both next year.

Gleevec in trials for scleroderma

I've read a few articles about a newer drug with the brand name of Gleevec. Originally used to address cancer such as leukemia, it is now being tested with other diseases with scleroderma being one I (and others that follow this blog) care about.

The latest article at http://www.oregonlive.com/business/index.ssf?/base/business/1228263912108410.xml&coll=7 with the relevant portions copied here:

"It's wild, isn't it?" said Dr. Daniel Furst, a professor of rheumatology at the University of California at Los Angeles. Furst is leading one of at least five clinical trials testing whether imatinib can reverse the symptoms of scleroderma, or systemic sclerosis, an autoimmune disorder that damages the skin or internal organs.

The drug appears to act by stopping damaging inflammation, a common factor in autoimmune disorders.

The drug appears to act by stopping damaging inflammation, a common factor in autoimmune disorders. Researchers at the University of California at San Francisco recently showed how imatinib could reverse diabetes in mice by blocking a cell component called platelet-derived growth factor receptor, or PDGFR. The receptor is part of a signaling system that regulates cell growth and inflammation.
Researchers also have started to connect the dots at a molecular level. In 2006, Italian researchers reported compelling evidence in the New England Journal of Medicine that PDGFR activity plays a leading role in scleroderma. That prompted Furst's team and others to test imatinib in patients with scleroderma.

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I've emailed Dr Wigley at Johns Hopkins to give him a quick status update on me since I haven't been there since June and to ask if JH is doing anything with the drug. I'll let you know what he says.