11 June 2008

"Sleeeep, my sweety ..."

I am taking a drug that affects my body on a cellular level.

Methotrexate, the “gold standard” of treatment for rheumatoid arthritis for the last 20 years, inhibits the body’s cells from metabolizing folic acid, which helps them stay alive and doing what they’re supposed to do, depending on what sort of cell they are. This, in its turn, is supposed to inhibit the body’s overactive autoimmune response, which is what causes RA to inflame the joints and make them hurt like a son-of-a-bitch.

It’s all rather elegant, in a microscopic cellular sort of way. Because the cells would die without folic acid – eventually causing their host organism to shut down and die too (that’s me) – I am also taking a folic acid supplement which keeps them alive and working.

Barely.

Or at least, that’s how it seems. Because since I started taking this stuff a month ago, I have been so frickin’ tired it’s unbelievable.

I take one dose a week. You read right. One dose a week. Until this week, I was taking three tablets of the stuff. On Saturday, I went to see my new rheumatologist for a check up, and I’d strapped on my courage, cuz I was gonna tell the guy I didn’t want to take this stuff anymore. I’ve spent the last month in a semi-daze, exhausted. Sleeping frequently during the day. I’ve felt weak, physically overwhelmed. There have been moments when it’s all I can do just to get up and go to the bathroom.

He actually smiled when I told him what the drug was doing to me. “That’s a quite common side effect,” he said. I didn’t tell him, but I knew that already because I googled the fookin’ stuff and came across several message boards where people of all ages and both genders complained, sometimes in CAPS, that this drug was killing them. “Works great for my arthritis,” one person wrote. “But it’s killing me.”

“It makes me feel disconnected from myself,” wrote another.

I can relate.

I said to my doc, “It’s making me really tired. I feel drained. No energy. I have to take naps.”

My doc smiled. I like him. He’s a rather large, striking cocoa-skinned man with gray fuzz on his head. Golden, wire-rimmed glasses. A kind smile. I think he might have grown up in Jamaica, or Haiti. His speaking voice is deep and mellifluous, and he says “a-gane” for “again.” He’s straightforward and, for a doctor, quite forthcoming with information.

He told me a-gane that methotrexate is the “gold standard.” It works beautifully for lots of people who sufffer from RA. Originally, it was used only as a chemotherapy drug to treat cancer, but at some point they began to realize that even as the drug killed cancer cells, it also seemed to arrest the progression of RA in the patients that had that, too, on top of cancer. Their joint pain diminished. And so in the mid-80s, after trials, it was made available for use in treating RA as well, though in much, much lower doses.

“I would really like you to keep taking it,” my doc said gravely. “You have severe , active RA, and methotrexate can be very helpful. For some people, this annoying side effect lessens over time. I believe it’s the best drug you can take right now.”

“Oh,” I said. He didn’t have to actually call me a crybaby to make me feel like one.

“I started you on a very low dose to see how you’d tolerate the drug. Some people have violent stomach upsets with it, but you don’t. So I’d like to double the dose and get you up to a therapeutic level.”

“Um…” I began.

“I’d like you to try taking it in phases. Over a 24-hour period, take the six tablets two at a time. Say at dinner, then breakfast, then dinner again. In some cases that can help to mitigate the feeling of exhaustion.”

“OK,” I said, feeling like a limp dishrag. Where was my resolve? I really had planned to tell this nice man where he could stuff his evil drug.

So, on Saturday night, I took the first two tablets. On Sunday, I took two more in the morning, and the last two with dinner that evening. So far, so good. I felt fine Sunday, all day.

On Monday, I felt fine. No urge to drag myself, panting, back into bed. On Tuesday, same thing, except in the mid-afternoon, when suddenly I felt as if I was standing in the middle of the Wicked Witch of the West’s poppy field with Dorothy and the gang. “It isn’t the methotrexate,” I told myself desperately. “It’s just the mid-afternoon sleepies. Everyone gets those. Ignore them, they’ll go away.” They did, but slowly.

Cool, I thought. It worked! Thanks, doc! I was pleased. I could keep taking the “gold standard” medication for rheumatoid arthritis after all. I didn’t have to be a wimp or a crybaby.

And then today dawned. I got up early. Usually, when I wake up, I wake up. I’m refreshed. I’m a morning person. But this morning I yawned six times between the bed, the bathroom, and feeding the dog. I yawned a-gane when I made coffee. I kept yawning. I sat down at the computer to drink my coffee and read the news and my favorite blogs. I yawned until I fell asleep sitting up in my chair at the desk.

At 9 a.m., unable to fight the deep urge to sleep anymore, I crawled back into bed. The cat was delighted and meatloafed himself on my hip. I slept for an hour, and then the dog woke me, barking like a fool at the meter reader. I made myself some breakfast, yawning as I poured my GrapeNuts into a bowl. I made another cup of coffee. Ate. Drank. Yawned.

A few minutes ago I went out to the car, thinking that I’d clean it up a bit. You know, dust the console, vacuum the rugs, take out any stuff that had accumulated on the floor in back. Winter scarves, a yoga mat, a heavy coat I wore once and then just left in the car in case I needed it. Now the temp’s reaching the 80s most days and summer solstice is only a week away, I figured I should put the winter togs away and make sure I had a bottle of sunscreen lotion in the side pocket on the door.

I sat down in the driver’s seat and started dusting. A moment later, I stopped. I could barely lift my arms. I was so sleepy it was almost scary. I sat there a minute, gathering my wits, and then forced myself to get up, close the car door, and shuffle back inside. I’d clean the car up later. Maybe next summer.

It seems that taking the methotrexate in phases over 24 hours only keeps the body from absorbing the drug all at once. Instead, it absorbs the stuff very slowly, which gives the cells, initially, a chance to drag themselves back up by the bootstraps between phases. But once the full dose has been taken, the drug settles in quietly and, while the cells are congratulating themselves for being so tough, it just comes out of nowhere and gives them a massive one-two punch.

And I’m K-O’d.

I’d complain less, I think, if the pain from the RA was going away. But it’s not. It hasn’t even begun to abate. That could take three or four months, the doc said. It might not even help the pain at all, but it would slow the progression of the disease in any case.

I see the rheuma doc a-gane in 60 days. If I’m still having this insidious, energy-draining side-effect then,and he starts persuading me with his warm-honey voice that I like sleepwalking, I’m going to stick my fingers in my ears and sing “LA LA LA I CAN’T HEAR YOU!” until he hushes. Because I’m all for slowing the RA down, but if I have to feel like I’m running on fumes for the rest of my life, it may not be worth it.

3 comments:

Blowing Shit Up With Gas said...

I've read some amazing things relating RA to diet change. Who knows if it really works, but could be worth reading.

Larry Jones said...

Poor baby -- you're in a tough spot. (At least the cat is enjoying it.)

lucy said...

Ah Wren, the cure is worse than the disease, huh?