Wednesday, March 9, 2011

My First Actemra Infusion

Sorry for not posting sooner, and commenting and everything. I've been finalizing my first special issue of House & Home – Kitchens & Baths, on sale on newsstands March 28! – and have been crazy busy!

I had my first Actemra (tocilizumab) infusion yesterday. (By the way, I have no clue how to even begin to say the generic name of this drug, only the brand name. If you're curious, check out this blog post to find out how drugs get their often freakishly unpronounceable names.)

Leotard kindly offered to come along with me to keep me company. Personally I think she just likes to see me suffer. Lol! Or she has a fascination with medical matters – which, I confess, I also do. Or she's a genuinely good, caring friend. Whatever the case may be, I was happy to have her along. She keeps me laughing and distracted from the matters at hand. Like getting a needle in my wrist and being infused with a drug that was just approved last January and that, as everyone has been warned, has caused one death. Yes, one death.


I knew that going in.

I do my research. I read the obligatory side-effects warnings, and I know what I'm getting into. All the drugs I'm on, for rheumatoid arthritis and migraines, have scary-sounding side effects, and bad things happen. But I'm more likely to get hit by a car crossing the street. Or smack my head falling down in the tub, or slip on ice and also smack my head during the interminable winter we've been having here, quite frankly. And I kinda like to be able to move, you know? So getting the drug was the plan.

I hadn't been at all sure what to expect from the infusion clinic, but it was super comfy. There were about 11 La-Z-Boy–type recliners, each with a pillow on it and curtains that you could draw for privacy. There was even a big-screen TV. Kind of like first class in a plane – or what I imagine first class in a plane would be like, since I've never actually experienced first class!

Leotard and I went to the back of the room, so she could sit beside me, and we made ourselves comfortable.

Then the very kind infusion lady came around and set to work. She weighed me (I have lost yet more weight!!!) and took my blood pressure and temperature. Then she inserted the IV line; aside from a momentary pinch, it wasn't too bad. She set up a saline solution line first, explaining that once the Actemra came over from the pharmacy, she'd hook that up. So there Leotard and I sat, chatting, until the Actemra was hooked up. Then I curled up and closed my eyes, while Leotard played games on her cell phone and read magazines (what a good friend! sticking around even though I was ignoring her!!). In between, my blood pressure and temperature were taken a few times. An hour later, the infusion was done. After that, I had to stick around for another half an hour to make sure I was OK, my blood pressure was taken again, and then I could go.

Done and done!

Now we'll see how the Actemra works for me (my hands and feet have been more "there," if that makes sense, since I stopped taking Enbrel three weeks ago, and my legs have gotten that loose feeling they haven't had in ages), and what my blood-work results are each month going forward.

Keep your fingers crossed!


  1. I hope it works for you! Sending prayers and hugs your way!

  2. Can't wait to hear how this new drug works for you! All the best :)

  3. Read some good success rates for this drug Laurie, so I hope it's the magic one for you. How exciting about your magazine :D will there be an online version we can have a look at?

  4. Thanks so much, everyone. So far I feel pretty much the same, but we'll see!

    :) L

    P.S. Squirrel, I'm trying to find out if you can get the special issues digitally. I know you can get the regular ones that way. Will let you know if I find out...

  5. Hey Squirrel,

    Here's info on the digital edition:

    Digital copies of the Kitchens special issue will be available via Magazines Canada on March 28th.

  6. Hi have severe ra. just been told i can start actemra. i am scared, but all i have been doing is laying in bed i am tired and have taken a package from my job. i just want my life back. I am really scared because i read that there have been some deaths. i have not responded to enbrel, in fact it made me more tired. tried methatrexate and sulfur and ended up in hospital. have gained weight from steroids. on a positive note, they helped with my hay fever. i am at my wits end and i just want my life back

  7. I began actemra last year and have been taking monthly for about 8 months. So far, it has worked compared to embrel, humira, methotrexate, and plaquinil. I was allergic to remecade and orencia. I'm almost back to normal, but I think my stress level has something to do with why I'm still experiencing stiffness and occasional cramping.

  8. I have been on actemra for about 8mths and I get them monthly. I have taken all meds and nothing worked or I was allergic. I do believe stress has a lot to do with some of the meds not working. I still have stiffness and some cramps, but overall, this really works.

  9. I have my first actemra infusion may 29/2012. I was on Remicade for a year but got two side effects from it. One was psoriasis and the other was nerve problems. I also take leflunimide and methotrexate.

  10. I have been having monthly actemra infusions for the past 4 months and it really seems to be working for me! I do find that I experience side effects on the day of the infusion (chills, aches and nausea), but feel wonderful the next day. Good luck!