Thursday, July 16, 2009

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).


Anonymous said...

I am so happy that you are stable and feeling good. This is great news! Thank you for sharing through your blog and please keep us updated. You are inspiring.

Anonymous said...

Don't stop writing. It makes us all feel better.
I just received a call from Johns Hopkins. Dr. Wigley is not taking new patients this year. I am crushed!
I was offered an appointment with a female doctor who has just finished her fellowship. Once a patient begins with a doctor, he cannot transfer to Dr. Wigley. Should I take the appointment? I am currently going to Mayo Clinic.

Scleroderma Blog said...

I'm aware of both Dr Wigley and Dr Hummers, both of which you can see at .

Getting into the JH Scleroderma Center is what I think is important and having them analyze the situation and start some course of action. They all work together.

Anonymous said...

I am sorry to bother you again, but I have one more question. I can see the new doctor, who just finished her fellowship at JH, in August. I can see Hummers in October. What is your recommendation?

Scleroderma Blog said...

It's not a bother at all. Unfortunately your guess is as good as mine. If you are feeling ok now, then waiting longer might be an option. If you want to start treatment as soon as possible (which is what I feel is best), August sounds good.

I think in the end, all that matters is someone there starts treating you. I don't think the treatment of the disease would be different based on who you see. From what I've experienced, if the doctor wasn't excellent and committed, they wouldn't be there in the first place.

Anonymous said...

Glad you are doing so well! Thanks for posting the update.

I started at the clinic years ago with one of the newest staff and have never regretted it. They do work as a team, both at the center and with other Hopkins collaborators.

Anonymous said...

Thanks to whoever posted the last comment. It is very expensive for me to travel to Johns Hopkins(plane tickets, rental car, motel), so I certainly want to make the most of my visit. Perhaps I was in denial, but I never expected the disease to progress so quickly.

Anonymous said...

Hi, there
Good update! Don't know if you recall me, but other than being female, you and I are very interchangeable in terms of disease and length of disease. And also our wonderful doc!! (He is the best!) I was very interested to read that he does not want to take you off Cellcept yet. Would you please drop me an email, I'd love to chat about dosage and such. I see Wiggles on 8/11/09. thanks!

mommyof6 said...

Thank you so much for your POSITIVE comment. I was recently diagnosed with scleroderma and just started Cellcept yesterday. I have checked out blogs on the sickness before, but I had nearly given up becaus they were all so depressing and negative. I understand that the illness is frustrating, painfull, and serious, but I am a single mother of 6 ranging from ages 16 to 2 years and I NEED to be around for them. I work at a high school and am pursuing my teaching credential. I will be going on limited work schedule next week but I want to see my students because they help shift my focus. Your words give me inspiration, especially the part that talks about your lungs being at 98%. That's extremely encouraging. I start a scleroderma lung study in a month and will be frequenting my doctor at UCLA (Dr. Clements) even though I live in Sacramento. The trip is worth it though as I feel that I am in good hands. I previously had Kaiser and the experience was very disappointing. I'm glad there are positive people taking the fear and depression out of this illness. So I have to live with it, but I thank God that I can live! Keep sending inspirational messages, this is the only blog I've seen so far that is positive! Thank you

Anonymous said...

I have been seeing Dr. Hummers for about eight months. She is fantastic -- knowledgeable, caring, and thorough. The JHU SSd group works as a team, including pulmonoligists, cardiac, skin, etc.

High recommendations for Dr. Hummers and the whole team. By the way, in case you didn't see it the JH reumatokogy group (which includes the SSd team) was ranked #1 in the nation last month


Hua said...

I'm glad to hear you are doing better. Your blog is a great inspiration for people with scleroderma, and I’d love for you to share your past and upcoming experiences with others through Wellsphere’s HealthBlogger Network (HBN). With the HBN, you can connect with others and encourage those who are going through similar things as you.

For more information about joining, check out or feel free to e-mail me at hua [at] wellsphere [dot] com.

Director of Blogger Networks

Anonymous said...

If you do not have to travel a long distance I would opt out for seeing the doctor there.

Anonymous said...

Thank You for sharing your blog! I love reading all of the posts. I have been going to Hopkins for 17 years, I see Dr. Wigley and he has saved my life. If anyone has a chance they need to try and get an appointment,and if thinking about it I would start now as sometime the wait is long