I haven’t posted for a very long time, and I really do apologize. Now that the new year is well underway, no turning back, I’m going to do my best to post here a lot more often.
First, I have some really good news! I started Rituxan in November last year, after two, disappointing, 6-month-long trials each of Humira and Enbrel. Neither of those anti-TNF-alpha biologics had any effect on my rheumatoid disease. In fact, during that year my pain, fatigue, and frustration only increased.
But Rituxan! After about six weeks without any appreciable change, I started noticing that my hands and wrists, which have long been my worst RD and most frequent (read “constant”) symptoms for the last 10 years, weren’t hurting as much. At first, I barely believed it. After all, flares come and go, and with the holidays behind me, I thought (pessimistically, yes) that the change was likely due to less stress. In addition, we finally started getting some consistent, normal rainy weather here in drought-stricken California. Rain arrives with low barometric pressure, and I’ve noticed that I generally have less pain and other symptoms when the barometer falls and bottoms out. The cooler temperatures don’t bother me much. So, not really daring to hope, I put the positive change in my pain/disability levels off to those two circumstances: less stress, and weather.
As January progressed, however, I just kept feeling better. It was subtle–I’d be going through my day when suddenly, I’d notice that my hands weren’t tender and twingy. Nor were my feet, which had been increasingly cranky over the last year. I was sleeping better, not waking up multiple times during the night because of pain as often, and my sludgy, sore stiffness in the mornings didn’t last quite as long.
And then I started noticing that I simply felt better overall. Again, it was subtle, like turning a light on with a rheostat, changing it in small increments from very dim to bright enough to see and read without issue. I had a little more energy. I saw my new rheumatologist (my beloved old one transferred to another state in September last year) in early January. I told her, cautiously, that I was feeling better. She was pleased, and said that my response was right in line with other patients for whom Rituxan proved effective–six weeks to two months after infusion, on average.
Rituxan is a chemotherapy drug originally developed to combat leukemia and lymphoma. The drug contains a live human antibody that targets and destroys B-cells that have the CD20 antigen on their surface. These can provoke an autoimmune response in some people. The drug generally continues killing B-cells for four to six months after the two infusions. The infusions, given two weeks apart, take about six hours each. Frankly, I prefer this method of delivery to self-injecting, even with an auto-pen. I’d gotten fairly used to doing it, but I was always uncomfortable and nervy, anticipating that heavy, stinging burn even when it didn’t come. I think that was really what I disliked the most about the injections: I couldn’t predict from week to week whether they’d hurt a tiny bit or a lot. And when the drugs did nothing in terms of relieving my symptoms, well…
I’m still taking my old, triple-therapy DMARDs, as welll: sulfasalazine, Plaquenil, and Arava. My rheumy has lowered the Plaquenil dose slightly, and says we’ll keep weaning off it slowly depending on how I do. I’d love it if I could take fewer RD drugs!
All this good news doesn’t mean I’m totally symptom-free. I still have occasional pain in my hands and feet, and my hip bursitis still raises its ugly head now and then. But these symptoms and comorbidities don’t stick around for long. Usually, they fade out within 24 hours or so. I think I can live with that.
A major reason I haven’t written much here on RheumaBlog is that I’m doing so much freelance writing elsewhere, both about RD and other health subjects. If you’re a real glutton for punishment, you can read about a year’s worth of my thoughts (written as Wren) about living with RD over at RheumatoidArthritis.net, an excellent, extremely dynamic website with a large and friendly patient community. (Another goal for this year: cross post these articles here, to RheumaBlog. I simply forget to do it. My bad.)
The other writers there include such brilliant bloggers as Carla, Mariah, and Andrew, and there are several others, as well. Their words and their writing are wonderful; each has a different take on the disease and offer positive ideas, encouragement, and education about living with it with hope, humor, and courage. I hope you’ll check them, and RheumatoidArthritis.net, out.
I’ve also attended several RD-and-health-blogger conferences and meet-ups over the last year or so, including Joint Decisions, HealteTalk, and most recently, RealtAlk RA.
Sponsored by a few of the big pharmaceutical companies, they’ve given me and many other bloggers and patient advocates wonderful opportunities to meet each other face-to-face, make new acquaintances and friends, and widen our scope of knowledge about the diseases we battle. The goal? To better pass on our experiences and understanding to others.
I can barely put into words how honored I’ve been to be invited to participate in these amazing get-togethers. Over the last year I’ve learned so much–including how to Tweet, which is another reason I haven’t been posting to RheumaBlog much lately. I twitter every day, talking to so many fascinating people from all over the U.S. and the world, all of whom have rheumatoid disease or other chronic or chronic pain conditions. My world has expanded exponentially because of my travels over the last year and a half! I’m humbled and so grateful.
As I mentioned in a couple of previous posts, I’ve been doodling, drawing, and painting again after a decades-long hiaitus. Here, too, I can hardly describe how much joy this has given me–and continues to give me. I’ve been participating in several casual illustration challenges within the Twitter illustration community, including #Inktober, #illo-advent, #AnimalAlphabet, and #ColourCollective. Participating is voluntary, but I’ve really enjoyed doing so as often as I can manage. Drawing and painting on a regular basis has
brought my old talent back to life and started honing old skills even as I learn some new ones. My biggest challenge at the moment is to learn how to do digital illustrations using
a tablet and drawing/painting software. It’s hard, but fascinating, and I’m determined to learn this new skill and get very, very good at it.
Finally, I’m still living with and caring for my mom, who I’m pleased to say has been feeling pretty good these last six months or so. We’ve settled nicely into our much smaller new home in the Sacramento suburbs, and we’re getting accustomed to living in this sprawling, busy, traffic-clogged place instead of the small, rural foothill community we were used to. There are good and bad things about both, but we’re focusing our attention on the good. For instance, shopping is so much easier now! Since that’s one of Mom’s favorite pastimes, that’s a Good Thing.
I’ll wrap this up now. Thanks for sticking with me in spite of my long blogging silence. I’ll be back soon!
So glad to hear you have found what works for you. I hope you continue to improve. Yeah!
Wow, I am so happy you are feeling well. And although I’ve missed these posts, I’ve loved seeing your wonderful illustrations. It’s so nice to be busy with the things we love, isn’t it? Wishing you continued wellness and days filled with creative inspiration. X
I hope the Rituxan works for you. Every time I had an infusion, I would go into almost anaphylaxis like symptoms. My eyes, nose and throat would swell shut and hives would cover my body as well. They’d give me benedryl, settle everything down and then slow the medication to administer over 10 or more hours. But, I’m glad that doesn’t happen to everyone. It did help my RA a little but it just wasn’t worth the hassle. Lol Hopefully it works for you.
So good to hear from you Wren, and even better to hear your great news! I’m so pleased things are going well for you at last, and as ever l LOVE your illustrations!
I can’t tell you much this cheers me up. Not only that you are better and that you are doing amazing things, Yes!!!! – but also because I just had my first two infusions of this same drug in Jan and now I am trying not to be impatient but in the back of my head, I am beginning to nurse hopes for spring and summer.
Wren: How wonderful. Love the update/recap and the happiness that comes through your post. I’m especially happy that the Rituxan seems to be helping! Especially since you’re back drawing your wonderful illustrations. It’s so good to hear from you here. (I, of course, read you on rheumatoidarthritis.net, but these posts get sent to my email so I never miss one!)
I’ve been so honored to attend several conferences with you since the end of last year and early this year. Those times are always too short, so I didn’t get all of the amazing things that are happening for you!
So happy that you have found the right med for your body!!!! Wow, you have had an amazing year. I enjoyed seeing you at JointDecisions and have been following your art on Twitter (when I’m there). I hope the fun continues for you this year.
Here’s to Rituxan and continued reduction in RA symptoms and no bothersome side effects. It seems that relief from Rituxan comes on slowly. Don’t you just love the 5 hour infusions?
It’s so good to hear that a med is starting to work! Yay! Good to hear from you 🙂
Woo! I’m SO happy for you! I’m sitting here with a giant grin on my face, imagining your progress. You just made my week, my friend!
Hi , I too am a photographer & dealing w/RA for the last 12 years . I would very much like to speak with you should you have a free moment .