Now I'm a little worried, because I have lupus
<p class="">Yesterday I went to the pharmacy to get my prescription of hydroxychloroquine. I’ve taken it for about four years, prescribed by my rheumatologist when I was diagnosed with lupus. </p><p class="">Unfortunately for me, I ran out the day befor
Yesterday I went to the pharmacy to get my prescription of hydroxychloroquine. I’ve taken it for about four years, prescribed by my rheumatologist when I was diagnosed with lupus. Normally I get a 90-day supply and the price varies based on production and demand. Hydroxycholorquine, as everyone now knows, is also an anti-malarial drug.
“It’s never lupus.” —House M.D.
Well, sometimes it’s lupus. Lupus is tricky to diagnose because there’s no one way to test for it (like many if not most autoimmune diseases). A combination of blood work and symptoms creates a constellation of information that points to an autoimmune disorder or not.
For me, several years ago, I suddenly had a sunburn even though I hadn’t been in the sun. My cheeks, the bridge of my nose and my forehead reddened as though I’d worn sunglasses and fell asleep on a beach blanket. Likewise the top of my chest. So I went to the doctor thinking it was rosacea or something, and he was like, “You might have lupus.” (He’s the world’s greatest doctor, btw, and his office is only five minutes from my house—not even a stoplight between them if I cut through the grocery store parking lot.)
It turns out, the aching in my wrists and fingers that I thought might be some early arthritis (my dad and grandmother both have arthritis) was related to the rash. When I’d get out of bed in the morning and shuffle around on sore feet, it wasn’t because I was a 30-year-old elderly woman. That was related, too.
The malar rash (aka Butterfly Rash) on my face and the pain in my joints, as well as some hinky lab results, pointed to lupus. But it’s a mild case of lupus—no involvement of my internal organs, which is very very fortunate. I started on hydroxychloroquine, which suppresses the immune system (lupus is when the immune system malfunctions and begins attacking itself, essentially) and that, plus occasional ibuprofen, had me feeling much better.
When lupus gets real
My first major lupus flare was immediately after Harry’s surgery, like, while he was still in the hospital. I’ve never written extensively about having lupus because most of the time it’s not a big deal and also I don’t wish to appear to be inciting pity. But now I feel like sharing, so people can understand why this medication is important to me.
For me, a lupus flare involves significant joint pain. If I’m under stress (like last week, when Noah came down with a fever for several days even though he hadn’t left the house—more on that another time), I feel some stiffness and soreness in my elbows and fingers. When I wake up, I feel “creaky,” particularly in my way-low back, around my hips. But ibuprofen and some exercise loosens things up and I’m okay. Hydroxycholorquine keeps these mini-flares manageable by suppressing my immune response.
A major flare is much, much worse. During Harry’s first night in the hospital, after a brief spell of sleeping on the bench bed for visitors, I couldn’t immediately straighten up. My back ached badly, as did my feet, hands, shoulders, knees. I had to go home and leave Noah with Harry for the second night because sleep is the best thing for me during a flare. I cried on my way out. But then I went home and slept for 11 hours straight.
Extra sleep absolutely helps—when it’s possible for me to get—but during a major flare, it’s not enough. My hydroxychloroquine dose can be doubled, and I can also take steroids. I had to during that time, because my arms and hands were so sore I couldn’t even lift a skillet. Harry was still nursing during the night, and I’d have to call to Noah through the baby monitor to come lift him and put him back in his crib for me because I couldn’t hold him and stand by myself.
Then my hair started falling out.
I’d experienced some minor postpartum hair thinning in the past with Ethan and Oliver, which is normal because hormones during pregnancy can actually cause your hair to temporarily thicken. At first I assumed that’s what this was—and it may have been, to a degree, though Harry was 9 months old at that point. But every time I’d brush or wash my hair, distressing amounts would fall out. You could easily see my scalp in several places. I photoshopped a vacation photo because it looked like I had a bald spot.
Now, a year and a half later, I can finally notice my hair coming back enough that I don’t have to rely on brunette dry shampoo to mask the thin bits so much. My head is full of four-inch-long baby hairs.
In addition to the hair loss, I developed pleurisy a couple of times. Pleurisy is an old-timey-sounding name for inflammation of and fluid in the tissue surrounding the lungs. I had a sharp pain behind my right shoulder blade, and whenever I’d breathe deeply, an ache spread through to my chest. It felt as though an arrow was going through my back.
But steroids helped! I had to take a couple of courses of steroids, but luckily the pleurisy resolved.
Maintaining my health
As I said, I haven’t had a major flare in a while. That flare ebbed and flowed, but lasted months if we count it as one flare. Now, if stress or illness gets to me, the butterfly rash appears like a mood ring on my face. My finger joints will be sore. I’ll wake up with aching shoulders and lower back. But the hydroxychloroquine helps my body knockdown these minor flares.
When I went to pick up my prescription at the pharmacy, there was no indication anything had changed. Until I swiped to pay, and I asked, “This is for the 90-day supply?” The total was just under $10, which was pretty good. Sometimes it can be $20; I think once I paid $40.
“No, that’s a 14-day supply,” the pharmacy tech said. Cue record scratch.
“Say what now?”
She explained that corporate was limiting the distribution of hydroxychloroquine until more is known about its efficacy for treating Covid-19. I am to call back shortly before my two-week supply runs out, at which time they may be better able to predict availability.
Last night while I was filling my weekly pill pack, I noticed there were only ten pills in my fourteen-pill bottle.
I hope hydroxycholorquine—or SOMETHING—helps people suffering from Covid-19. I really do. I simultaneously hope that doesn’t mean I have to give up a medication that’s helped me maintain my health and quality of life for several years now. We all must make trade-offs of our individual freedoms and privileges to help one another. I just wish we didn’t have to trade lives.
To me, this further proves that medical care shouldn’t be a privilege. If we valued the health of our neighbors as much as our own, no matter the status of their employment or the size of their paycheck, maybe we would’ve been better prepared to handle this pandemic. Maybe if everyone who needed a hardcore anti-inflammatory, anti-malarial drug already had access to it, ramping up availability wouldn’t be a herculean task.
Just a thought.