On the road to beating Scleroderma!

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I figured I’d start one of these

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Starting To Put It Together + My First Foray Into AP
Lab results, confirmation of esophageal dismobility, sneaking doxycycline and seeing the first results

Labs were run for me in July 2009 and the ANA panel revealed that I had some antibody activity going on. Everything was theoretically “within range”, but my numbers were certainly moderately elevated. (images below)

My rheumatologist didn’t believe I had scleroderma or that I might necessarily develop scleroderma, so he wasn’t willing to even entertain the idea of treatment, nevermind AP. I couldn’t find a doctor willing to “pre-emptively” prescribe me AP based on my gut feeling that I did have SD, so I went ahead and told a travel clinic I was going backpacking through Thailand. I got rx’d doxycycline (as a preventative against malaria) and began taking 100mg BID M-W-F. When I needed refills, I went to drop-in clinics and said I needed the antibiotics for acne.

After a couple months, I managed to talk myself out of the idea that I had SD and just stopped taking the drugs. I can’t remember what happened, but months later, I began to worry again and so I restarted my doxycycline prescription. I was never very good about it, though, and kept missing dosages.

Around this time (June 2010), I asked my rheumatologist to refer me to someone to get my esophagus checked out because I’d developed pretty bad heartburn in the past year. I had a barium swallow done and it showed that my lower esophagus is shot. Here is the doctor’s finding:

Digital video study of swallowing shows no evidence of incoordination at the level of the hypopharynx. The cricopharyngeous functions normally. The esophagus is moderately dilated and there is absence of primary or secondary peristalsis seen in the lower third. The appearance is quite consistent with scleroderma. The region of the GE junction appears normal.

By sheer coincidence, the supervising doctor’s daughter suffers from CREST and so we spoke about SD a bit. He told me that my esophageal changes were pretty consistent with scleroderma. It was a weird moment

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Pulmonary Fibrosis 101
Learning about Interstitial Lung Disease and having to decide what to do about it

This subject is a total bummer, so let’s start with some animated cats:

Though I’d been out of shape for awhile (I haven’t been one for exercise since high school), I noticed that I was feeling especially junky this past summer. When I got back from a trip in August, I noticed that when I yawned or tried to take a deep breath, I felt a strange irritation in my lungs. I let my rheumatologist know, and he referred me to a pulmonologist.

My pulmonologist had me do a basic Pulmonary Function Test before I even met him. Here are my results:

Essentially, it was revealed that my lung capacity was already at just shy of 60% (FEV1 Pre Meas

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