Monday, January 26, I had my first Actemra infusion. I’m not sure how to feel or react to this, exactly. Hooray? Congrats to me? Holy shit? THIS BETTER WORK? In any case, it’s a new chapter in my RA life. Actemra is now the fifth biologic drug I’ve tried since I first began biologic injections/infusions, starting with Enbrel in autumn 2002. I can’t believe I’ve been on them that long! Luckily (I’ve been very lucky) I haven’t had problems with side effects with any of these still fairly new medications.
Before beginning Actemra on Monday, I received bi-monthly Remicade infusions for about seven years (for the second time). I had been on Remicade once before from approximately 2004-2007, then I switched to Humira injections because I moved to France briefly to teach English (my doctor and I decided it would be easier to do injections in a foreign country rather than trying to sort out getting infusions while abroad). When I returned home to Minneapolis from France, I switched to monthly infusions of Orencia, basically because I really hated giving myself shots; I never got used to doing it. I can’t remember how long I stayed on Orencia, but my rheumatologist and I decided that if I was going to stick with I.V. infusions, Remicade seemed to work a bit better for me. So after a brief time on Orencia, back to Remicade it was.
A few months ago my rheumatologist and I finally decided that it was time to change my RA treatment and try a new biologic. Remicade just didn’t seem to be working that well anymore. I was on prednisone more often than I wasn’t due to frequent and stubborn flare-ups. One of our main goals for my treatment has always been to stay off of prednisone. And now that I try to remember, I think it’s been at least a few years since I’ve been off of it consistently for more than a few months at a time.
So! While starting a new medication can be scary and worrying, I’m also trying to be hopeful and positive that Actemra will be a good turning point in helping to stabilize my RA and maybe even put me into “remission” for the first time. I’m so ready to have a good long stretch of significantly decreased pain and flares and especially a nice lengthy period of NO PREDNISONE.
But aren’t they all inconvenient? I’m sorry I haven’t posted in such a long time. This winter in Minnesota (and other parts of the world, I know) has been brutally depressing, and I basically haven’t felt well throughout most of it. As I sit here writing this, I’m looking out my window at SNOW covering everything. We got dumped on yesterday and last night, which isn’t helping my mood or physical state of being. I’m bummed out, I’m stiff, I’m achey, I’m anxious, I hurt all over.
Anyway, I’m currently in the middle of a pretty bad flare-up. My stubborn right foot and ankle have been in intense, swollen, throbbing pain all week. The left ankle is also flaring up but not as bad as the right one (which is its usual pattern). I’m also taking 30 mg of prednisone, which is making me feel sluggish and bloated and agitated and mental and everything that wonderful prednisone likes to do to a person. I think it’s helping, a little. I hope it will hurry up and knock out this inflammation ASAP though. I’m supposed to drive six hours south to Omaha this weekend to spend time with friends I haven’t seen in a while, but I don’t see how I can do that with my inflamed foot. Driving only irritates it more. Not happy.
So, to sum up–winter came back last night and dumped a load of snow and misery on my street. RA came back this week and dumped a load of inflammation on my feet. I’m pretty pissed off about both things. Hopefully there is a silver lining to this, somewhere. There must be, right?
So I’m back on prednisone, which is annoying. Right now I’m taking 10 mg, but I was taking 15 mg for a couple weeks. About a month ago a pretty bad flare-up started in both feet and ankles–especially the right foot and ankle. Swelling and terrible, throbbing stabbing pain. I’ve been trying hard to resist taking steroids because of their nasty side effects, and because I’ve been trying very hard to lose weight. But, once again I felt I had no other choice than to take prednisone temporarily until the flare-up is gone. The drug has been helping, which is great, but it’s also been affecting my moods and causing me to have a raging, ravishing appetite. I want to stuff my face with every carb I see, basically. This is frustrating and depressing.
I wrote more about this in a blog post for RheumatoidArthritis.net which hasn’t been published yet (soon, hopefully). In it I ask for tips and suggestions about how to cope with the side effects of prednisone. How can I control my appetite better while taking this wonderful yet awful drug? I’ve been trying to drink a lot of water and tea which is helping, sort of. I’m not sure what else to do other than, yeah, taping my mouth shut. But when a pasta/bread/sugar/chips craving pops up, I’m not sure if I could stop myself from ripping it off anyway. Lock me in a closet instead? Chop off my hands? Joking aside, those aren’t realistic options, of course. Anybody have any good ideas? Please tell me soon, before I clean out the fridge…again.
Last night I happened upon a fascinating and frightening documentary on Frontline about the rise of certain types of deadly drug-resistant bacteria (also known as “super bugs”). While this is a major concern for healthy people with normal immune systems, it’s an even bigger one for those who have auto-immune diseases and compromised immune systems, such as RA. It’s not just the fact that these certain types of bacteria are resistant to antibiotics, but the gene mutations that are seen to occur in people to transform “normal” bacterial infections into these super bugs–that’s what’s even more terrifying. Watching and listening to the stories of the people who became infected with these super bugs made me shudder, Wow if I get one of these I’ll survive about five minutes. OK that’s probably an exaggeration, but if these infections are ravaging and killing healthy bodies, I can’t imagine that those who have weak or compromised immune systems could survive them. Or can they? It’s a question worth finding out, I think. I also found it disheartening and rather appalling that the drug companies are not very invested or interested in working to create and bring to market new antibiotic treatments to treat these super bugs, according to the documentary. Why? Spending millions (billions?) of dollars on developing and marketing antibiotics isn’t very profitable because antibiotics are intended only for short-term use, compared to say, cholesterol medication you take every day for years. Or arthritis drugs which are also taken on a daily basis for a long time (imagine that!).
Anyway, this is an excellent documentary and I highly recommend watching it. Here’s the link: