Saturday, January 25, 2014


I can't believe it's been this long since I last updated this blog, but here I am again. Last time I talked about my experience with Rituxan, and a lot has happened since then. The results were positive with that drug, at least as it concerns to the Dermatomyositis. But as luck would have it, the Pulmonary Fibrosis wouldn't cave so easily.

Due to the positive numbers in the blood markers after taking the Rituxan, my doctor thought it OK to start tapering the Prednisone. After a few months, I was finally off the devilish drug, and I couldn't be happier. But then it started happening. Within a year, I was in very bad shape, breathing-wise. Eventually it got so bad that I had go into supplementary oxygen, you know, walk around dragging an oxygen tank. This was a huge psychological blow, and I went into depression, especially when the pulmonologist started talking about lung transplant... Time kept passing, things kept getting worse. Eventually, my doctor got me one of those portable units, the one with the small tank that you can strap to your back, which made things a bit better. Still, pulmonary function kept declining, and in fact, on my last check, they said I might not be able to use the portable unit anymore if my condition kept deteriorating, since I would need a larger flow rate.

It finally got to the point where pulmonary specialist said I'd have to go back to Prednisone, since it seems the only thing the fibrosis, responds to. So, despite all my hesitation, I am on Prednisone again. And yes, it did make things better. Despite everything, the damn drug does work like magic. I can breathe again. Of course, I'm not sleeping, I've gained 20 pounds in 3 months, I spend a good deal of time with excruciating stomach pain, and bloated... but I guess that's the price you pay. And also, of course, my rheumatologist reminds me, I can't stay on Prednisone for long, so now we must figure out what to do next. Since the Imuran obviously didn't work, now we're trying with IVIG. I've already had 3 infusions done, but it's still too early to tell how well it's working, especially since I'm still on Prednisone. So, I guess from here on, it's all wait and see.

Wish me luck!