Always interest from doctors about scleroderma

I have a stye in my eye which hasn't gone away so I went to a local doctor to get an antibiotic. Once she looked at my eye she started to write a prescription and the conversation turned to scleroderma. We spent much more time talking about scleroderma then about the stye in my eye. She was interested in the medications and how they helped, what changes occurred, etc. This is the same doctor's office, but with a different doctor, that I first went to in the spring of 2006 when my hands were bothering me which led to blood tests that showed I was ANA positive and the story begins.

The doctor even confessed that when she was first starting out at NYU that she considered going into dermatology but had some scleroderma patients and she said she just couldn't deal with it. She said back then there wasn't cellcept or other viable treatments.

When she handed me the prescription she said this should address the stye and hopefully they will find a cure for scleroderma. Hopefully!

Summer 2009 Update - Scleroderma Center Visit

It has been 6 months since my last update in the beginning of the year but it seems much longer then that to me. I set off early this morning to Baltimore and had no traffic at all so I was pretty early when I arrived at Johns Hopkins Scleroderma Center. I had some time to hang out in the car and read for about 40 mins.

When I went in, it was pretty busy in the waiting room but they always take good care of you. My weight is the same and my blood pressure is excellent. If I wasn’t sick I’d be in great shape! I was brought into one of the exam rooms and waited there a while before Dr Wigley came in. We chatted for a bit and went over all my medications before reviewing tests I had in the beginning of February. My lung test measures 2 critical items and 1 of those areas is now normal (98% of target). The other area (and I can’t recall the technical names of the areas) is flat from what it was last time but well into the acceptable range. My echo cardiogram wasn’t there so I need to call the hospital and get them to send it, but he has no concerns with it based on everything else.

For the exam, everything was the same as 6 months ago. When he was done checking me out, we discussed what I was most concerned with and that is stopping the primary medication called CellCept. Last visit he indicated that we’d likely stop it when I came back this time, but he started out the discussion stating that he now feels that 1 year on the lower dosage that I’ve been on is what we should shoot for as they were seeing about 25-30% of patients have a flair up after going off the medication before 3 years. So I get another 6 months of being on the medication that is helping suppress my immune system enough so it doesn’t do what it shouldn’t be doing in the first place. He said when I return in January if there’s no indication of anything negative happening, we’d probably go off the medication.

For about 2 straight years, every day, I took the equivalent of 12 Advil (ibuprofen) a day – one 600mg tablet 4 times a day. In March, I decided to slowly reduce the dosage and today I normally take the equivalent of just 3 Advil (one 600mg tablet) in the morning and that’s it. The main reason for the ibuprofen was for pain and for helping control the swelling primarily in all the joints which are effected. So far no ill effects from reducing the dosage there. I still haven’t had a headache since I started all this medication which is 2.5 years now.

When Dr Wigley was wrapping up with me, I mentioned the few folks in the waiting room, some of them in wheelchairs, that have that stereotypical look that individuals with scleroderma have – tight shiny skin on the face and hands. He said I was lucky to have had it diagnosed so quickly and then reacted well to the medication. That’s an understatement! I then asked if he was planning to retire any time soon and he said there’s a lot of exciting things going on and he isn’t retiring until he finds a cure. Dr Wigley is the man!!

After we finished up they took a few vials of blood from me for various research projects and I walked for 6 mins as part of another test they are running. I then setup my next appointment for mid January 2010. Hard to believe it will be 10 years since Y2K. I remember watching the ball drop, kissing everyone, and heading off to work to see if everything was still functioning.

So why did I start this update by saying it feels like more then 6 months? Probably because in the beginning of February, the company I worked for decided to essentially shut down their Internet division as it was structured and myself and a large portion of my team was “downsized”. I was very lucky though to quickly find an equivalent job and I am now at a new company responsible for their web publishing platform. With everything that transpired, it seems much longer then 5 months since I left that last job.

If things continue to go well, and I sure hope they do, you won’t hear much from me so I hope you all have a great summer, start of the school year, Halloween, Thanksgiving and a happy holiday season and New Year! You did start your holiday shopping already didn’t you?

Stay well and stay employed (for those that aren’t already retired and playing golf every day).

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!