Happy Sunday, everyone!
I need to pass along a couple of interesting items. The first is an overview posted on Healthline.com of a Consumer Reports evaluation of treatments and medications—specifically, biologic DMARDs—for rheumatoid disease. It’s a valuable piece of info, as it offers a better understanding of how biologics are used to treat RA. Check it out here. [Full disclosure: I write for Healthline.com]
Second: I received an email this morning from a PhD student at RMIT University, in Australia. She’s conducting a survey about therapeutic gloves, hoping to one day develop new, better gloves that will be more, well, therapeutic. The questions in the survey won’t ask any personal information—no name, no other identifying data. Instead, they’ll ask about your perception of the gloves you use now (if you use them at all); the durability of the gloves; and what you’d like to see in a new product.
I don’t know about you, but I’d love to have a pair of gloves that could really help soothe and relieve my achy hands. You can learn more about the survey, and take it if you like, here.
And now, for happenings in Wren’s world: Good news! The increase in my Plaquenil dosage and the addition of the NSAID etodolac to my daily cocktail of RA drugs worked! Last time I saw my rheumatologist, my labs showed a greatly increased sedimentation rate and an alarmingly elevated CRP, both indications of increased inflammation in the body—and a warning that my RA was starting a run out of control. In response, the doc made the above changes to my meds. I hoped it would work, but frankly, I was worried. RA is notorious for forcing the body’s immune system to find ways to neutralize any medications that might make the disease (I know it personally as my rheuma-dragon) sleepy and sluggish. It’s the main reason that so many of us who have this disease end up running through so many different drugs.
But this time, my labs dropped back down to within normal ranges. That minor change did the job. I’m very relieved. Last time I saw my rheumy, we briefly discussed starting me on Humira if the change didn’t work. He suggested I study up on the biologic DMARD, and we’d discuss it more at the next (this) appointment if necessary.
I’m glad we didn’t need to. I’m not afraid of the biologics, and I’m not needle-phobic (it’s hard to be needle-phobic when you have RA. We get jabbed so often!). I don’t really want to inject myself, but I can do it if it’s the difference between controlled disease with minimum-to-moderate pain and low disability vs. the opposite.
But the biologics bring with them some significant side effects. They don’t happen to everyone, of course—we couldn’t use the drugs if they did—but they do require sober thought. “They’re almost miracle-drugs,” my rheumatologist said. “But they’re serious drugs, too. I don’t prescribe them lightly.”
So, for the time being, at least, I’ll stick to the meds I’m taking. I wish they’d work better to relieve the constant swelling and ache in my knuckles and fingers, but I have a feeling they’re already doing the best they can, and I’m more grateful than I can express. I’ve already experienced life without them. I don’t want to go there, ever, ever again.
In the meantime, I’ve developed a fair number of coping skills for those days when my hands start feeling like someone stepped on them–and then did it again for good measure. I carry my therapeutic gloves—Isotoner compression gloves, if anyone’s interested—and I have a pair of thick, lavender-scented, moist heat, microwaveable mittens and a paraffin bath kept constantly warm for random acts of dipping. Ice packs are temporarily soothing when the hip bursitis strikes. I also know the therapy exercises that work best to calm things down again.
These, and other methods, like meditation, the art of purposeful distraction*, and mindfulness are all part of the arsenal everyone who has this disease needs. Oh—and laughter. That may well be the best medicine of all.
*You’re hurting. So, once you’ve gotten sick of sitting around muttering and feeling pitiful (and we all do it now and then, no matter how tough we are), you purposefully find a good movie or a book or some project to lose yourself in, distracting yourself from the pain for a while. Or maybe you go outside for a random walk, or to wander your garden. Or maybe you use shopping therapy. It’s all good and all healthy. Distraction works! It’s how our minds are made.
Hi Wren, I’m SO glad the medication change is working for you. That really is GREAT news! Woohooo!!!!!!!!!!!!!!
I’m so very happy you have your dragon under your thumb. It’s always a victory when we can control our RA and have good days. And I agree with the distraction method – by shifting focus, my bad days don’t always seem so bad. Stay well.
So glad to hear you are feeling better!! I hope the meds continue to work for a long time. Be well.
Hi! I was diagnosed with JRA when I was 6 years old and I’m currently 22 now. I have my own blog and would love help spreading the word that kids can get RA too! If you have time, please check it out!
That’s good that you can stay away from the needle. I took Humira for almost two years. Trying to inject yourself with fingers that don’t work was no fun. Thank goodness I was able to stop that med. I hope neither one of us needs it at all, ever!
Wren: I was traveling when you posted this and I got it via email. I was so glad that the change in medication did good things for you. I was on Humira as my first biologic and while I didn’t find it bad, as you say, putting off the “serious” drugs as long as you can find something else that works is a good idea. I hope you continue to feel well and the old RA dragon stays in his lair!