Sunday, November 6, 2016

OT: Sicky?

Well, I don't know. I am being scheduled for a whole raft of tests in the upcoming weeks and months, because my rheumatologist and pulmonologist disagree on what's wrong and how to treat whatever it is.

There is no doubt I have rheumatoid arthritis; joint pain and swelling are being treated with a combination of drugs: leflunomide, plaquinil, and prednisone. So far, the combination has worked well on my joints, so I have few complaints about that treatment. (It is expensive, but I'll get to the cost issue later or perhaps another time.)

The problem that isn't being treated directly is pulmonary. Ie: I have severely reduced lung capacity, and that leads to all sorts of other problems including chronic fatigue -- which is getting worse -- chest pain, tingling and numbness in my extremities, and so on.

According to the pulmonolgist, this is due to pulmonary fibrosis caused by RA. He says "treat it aggressively with steroids." My rheumatologist is dubious and says that from her perspective, she's not convinced that RA is the cause of my lung issues; she thinks it may be emphysema instead, as her read of the CT scan I had six months ago is that I have severe emphysema whereas the pulmonolgist says it's mild (which was the diagnosis when I had a CT scan five or six years ago as well.)

The rheumatologist also said that if it is RA-caused pulmonary fibrosis, she would treat it very differently than she treats my joint pain, and she doesn't want to start a course of treatment for fibrosis if that's not what I have. So she wants me to go to Denver for advanced tests at National Jewish Health, the leading respiratory hospital in the country. Let them determine what's really wrong, right?

As for steroid use, I've received so many warnings of dire side effects, I hesitate to add more to my current low-dose prednisone treatment (7.5mg per day) for joint pain. But the pulmonologist says that "aggressive treatment with steroids" is what I need for diminished lung capacity.

OK, what to do?

Meanwhile, the CT scan I had six months ago showed a mass in my lower right lung. This was thought by my primary care physician to be a consequence of pneumonia I was then recovering from, but the radiologist thought it might be a fibrous mass due to RA. He couldn't determine from the scan which it was, but he said it was  dubious about a pneumonia diagnosis from the scan. In the meantime, I have actually felt the mass recently, whatever it is, growing and pressing on my chest wall, causing discomfort and occasional pain. In passing, there has been some doubt I had pneumonia due to ambiguous symptoms and failure to respond to mild antibiotic treatment early on.

My rheumatologist says it could be cancer. Oh, thanks! I doubt that, but still. When physicians disagree, and suspect the worst, it's better to find out. I guess.

So, another CT scan is scheduled next week and tests in Denver are pending.

I'm frustrated to say the least. But this is how these things go.

FTR, I stopped smoking almost 20 years ago. If emphysema has worsened, it's not due to continuing use of tobacco. Since all these symptoms have multiplied, I suspect it may have something to do with altitude, as I moved from sea level in Sacramento to 6,300 ft in New Mexico's East Mountains in 2012. It may have to do with that and breathing dust, and perhaps other environmental triggers. I don't know. Of course, Old Age enters into it, too.

The saga continues.

[Ms Ché and I went to Santa Fe last night to see Jonathan Richman at Meow Wolf (George RR Martin's artist venture in a repurposed bowling alley we almost couldn't find). We saw him (aka JoJo) several times in St. Louis and California decades ago when he was still a pup. He's grizzled and old now -- like the rest of us -- but he still makes the kind of music he always has, and the crowd (which was mostly 20s and 30s age, plus their children, not geezers like us) ate it up. Yay! However, myself, I had problems standing through the whole concert (no seats for the wicked), and I was worried I wouldn't be able to walk afterwards. Luckily, I found a post to lean against and was able to jigger my leg enough to keep the circulation going, and ultimately made my way back to the car under my own power. Yay, again! I said to Ms. Ché that it was "quite a pick-me-up." She eagerly agreed. Fun.]

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