… says my rheumatologist. “Liver function is normal. Sugars are great. Sed rate is above normal, but lower than it was this time last year and holding steady. That means the meds seem to be working.”
“You’re on the top dose of leflunomide,” he says, “and at 2 grams a day, I can’t see any reason to raise the dosage on the sulfasalazine. How are you tolerating the diclofenac?”
“No problem. But I don’t think it’s doing much.”
“You might be surprised, though, if you stopped it.” He smiles. “Let’s raise the dosage a bit. How’s your sleep now? Amyltriptalene helping?”
“I wish it was.”
“OK. We’ll up that, too. You’re taking a very small dose.”
He peruses my charts, all of which are available to him electronically. The VA has gone completely paperless. On his computer screen he can see what my primary care provider has said about me. The endocrinologist’s report, too, and the results of my recent bone density scan. “You’re osteopenic. You’re teetering on the edge of osteoperosis,” he says, frowning at the screen. “They’ve got you on Vitamin D supplements, but … no calcium?”
I shake my head. “My PCP told me not to take any more because my calcium level was too high, and my Vit. D level too low. She sent me to the endocrinologists. They put me on Vit. D, but also said not to take calcium for now.”
He grunts and scrolls through screens. “I’m back to May 2008, and there’s not a single calcium count that’s above normal. You’ve got rheumatoid arthritis. You’re taking a huge Vit. D supplement, and while they were quite low, your Vit. D levels are completely normal now. You absolutely must have more calcium going in. Ionized calcium. Without more calcium, the Vit. D is leaching it from your bones. You can’t afford to lose it.”
I wait. This sounds like a doctor fight to me. I like and trust this doctor. He has a big heart. He travels to Ghana every year with Doctors Without Borders, bringing his expertise in rheumatology to poor Ghanians. His other job, when he’s not working for the VA, is bringing rheumatology care to local people he refers to as
“the hard-working poor — waitresses and janitors and landscaping workers, construction workers, with terrible disease,” who are uninsured but ineligible for Medicare or Medicaid in Sacramento County. He has four brothers and sisters back in Alabama; three of them have severe rheumatoid arthritis. It was watching them suffer that inspired him to choose this specialty 25 years ago. His younger brother is losing his sight to rheuma.
“I’m prescribing an ionized calcium/Vit. D supplement for you. When it arrives in the mail, stop taking the other Vit. D supplements and take this instead. We must get your bones the calcium they need.” He taps into the computer, making notes, but speaking them as he writes them, so I know what he’s saying there. He turns to me.
“Your increased pain could well be from the osteopenia,” he says. “Thin bones hurt.”
“I had no idea,” I say, surprised. I knew that osteoporetic bones are thin and brittle, and prone to breaking, but I didn’t know they could be painful, too. Nor did I realize I was “teetering on the edge” of osteoporosis. Less than two percentage points, he says gravely. “But no need for drugs to treat that, for now. Hate to add them to the mix you’re already taking.”
He tells me that the VA favors the biologic Humira, but that he’d prefer not to try that just yet. Particularly as my labs are looking so good. “Biologics, in my experience, can be very effective but they carry with them some significant risks. Many people start them, then must stop them because of the increased chances for infection and other possibly serious side effects.” He feels my disease isn’t bad enough yet to put me at risk, particularly since what I’m on looks to be effective.
I sigh. My hands hurt. “However, I would like to add Plaquinil to the current cocktail.” Since I have an appointment coming up with the opthalmologist in late March, he’ll wait until I’ve seen him before he prescribes it. “They’re experts here on Plaquinil eyes,” he says. “We have many rheumatoid arthritis patients taking it, so they’re very good at what they do. They know what to look for.”
Plaquinil can cause tears in the retina, so before he prescribes it, he wants a baseline eye exam. And then twice-yearly follow-ups with the eye doc. I nod.
He asks me how my appointments with PT and OT have gone, and smiles when I tell him. “They are indespensible,” he said. “OT in particular. We’re very lucky to have them.”
I tell him I tried acupuncture this week, and plan to go back for the next several weeks for more treatments. “That’s wonderful. I hope it helps you. It relieves pain for many people.” He tells me he likes my gumption.
Finally, he says, “You’ve lost a considerable amount of weight,” and smiles again. “I know how hard you’re working on this. I know it’s not easy, but it helps a great deal.” He reaches out, shakes my hand very gently. “You’re doing well. Be patient. This disease changes all the time, but we’re staying on top of it.”
While I always hope he’ll have a cure for me, or a way to stop my pain — both of which hopes are mostly wishing on stars, I still leave his office with a smile on my face. I always do. And I feel very lucky to have such a compassionate man as my rheumatologist.