I’m now a CureClick Ambassador, which means I get information about studies and clinical trials for RA (and other diseases). I hope to help find participants for the studies by sharing them on my blog and social media pages. As many of you with RA know, continued research, development, and approval of new drugs and treatments for RA (and other diseases) is desperately needed for the patients who suffer from chronic illnesses. As drugs fail for certain patients or become ineffective over time, we need to have more options. Clinical trials, and participants in these studies, are therefore crucial in the development and approval of new drugs.
So! I just found out about a rheumatoid arthritis study/clinical trial that needs participants. If you have RA, click here for more info and to see if you qualify:
Aaaand…I’m recently on Humira. Again. Xeljanz (as well as Actemra) failed me. Last Friday I gave myself my fourth injection, which now equals two months of being on Humira. Unfortunately, maddeningly, I’m still taking prednisone and I’m still having pain and swelling in my fingers and feet and ankles. I’m not happy about this. Actually, I’m trying hard to not be scared to death about it. Are the anti-TNFs no longer working? Will anything work?! Will I ever get off prednisone?
Here’s another update I wrote for RheumatoidArthritis.net about what’s been going on in my RA life, and specifically about the recent switch back to Humira:
My body is really frustrating me lately. In fact, I kind of hate it. I know that’s not a great attitude to have and being angry and pessimistic will not make things better. It’s really hard though when you feel like you’re playing this never-ending game of musical chairs or “musical drugs.” But it doesn’t sound much like music to me–more like the unbearable shrieking sound of “WE’RE NOT GOING TO HELP YOU!” screaming over and over in my head.
Come on, Humira. Get moving and do what you’re supposed to do, please. Please.
So this is what it looks like when you run out of 5 mg tablets of prednisone. Luckily I still had enough 1mg pills, but this is not really my preferred way of doing things. Sometimes it’s just hard to stay on top of all of this stuff, you know? Since this photo was taken, I did manage to get a refill for the 5’s. Whew.
I’ve been having a flare-up for the last three days or so in both feet and ankles, hands, and my right wrist. My shoulder too, I think (sometimes it’s so hard to tell which pain is which). And, in great frustration (and pain), I’m out of pain medication. Once again these new, stricter FDA regulations on narcotics are causing me additional and unnecessary suffering. And I know I’m not the only one.
So, sorry for complaining, but I think this issue needs to be talked about. I’d also like to point out that if I had easier access to pain treatment (which is obviously legitimate and not abusive), I would not be missing work this week. I’m losing. My bank account is losing. Society/the economy is losing. And my sweet kindergarten students are losing their teacher.
Here’s a good opinion piece I read today from The Boston Globe by Donald N.S. Unger:
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?