Actemra Anniversary

It's the end of July 2013 and I am amazed to be at my earliest infusion appointment ever (8am), and I find out that it is my 12th infusion of Actemra!  I have my regularly scheduled rheumy appointment in two weeks and am not anticipating any changes to my treatment .... I have been off of Methotrexate since October 2012, and for that I am grateful.

So how has my experience been on Actemra?  Well, I have to say I am pleased .... I have experienced moderate improvements through the year, nothing glaring and drastic, more of a slow build.  I am still taking NSAIDS in the morning and if needed toward the end of the day, and not too long ago started taking Cherry Concentrate supplements which actually helped with what ended up being OA pain in my thumbs.  My NSAID intake is about a quarter of what it was before Actemra.

The day of my infusions has been a different experience each time, of course, because anything too predictable would not be how we roll with RA!  Sometimes I get sleepy during the infusion, sometimes right after, and sometimes I have a "window", and sometimes it's a combination of both ..... see what I mean? I got sleepy WHILE drinking coffee during my infusion.  I went to work for 5 hours after, but 4 hours in .... I could feel "it", so I went home and fell into bed, slept for three hours and stayed in bed, able to get back to sleep around midnight.  Again the following day or two are unpredictable, with times of feeling "unwell", being tired, and if given the choice, would be home in bed.  I try to get little things done, an errand or two, so I don't feel like the day was wasted.  The next day I work for 6 hours, I have a headache and have three cups of coffee ..... I rarely have more than one .... the headache could also be due to a weather change ... regardless ... it is the day that I am having.  I ended up with a lot of trips to the bathroom and then waves of nausea later in the day but some ginger tea worked wonders.

Now, for the full spectrum of MY side affects on Actemra:  Let me just say that I did first have to have a TB test and $150 shingles vaccine before I began .... I experienced a runny nose during my first infusion, so I was given Benadryl in my IV and learned that I would required Claritin daily, I have had moderate nagging headaches, dizziness, hot flashes that began after an infusion about two months ago the day after my infusion (too coincidental for it to be anything else).  The hot flashes stopped, and the latest has been that my cholesterol levels have increased a little, but my PCP wants to wait until my next test for that in 3 months before we address it ... I guess it's not high enough to worry too much about.  I was saving the most dramatic one for last ... fairly early on my tongue swelled, I thought it was my imagination ... I should have gone to the doctor, I didn't ... it subsided .... what can I say ... it's a double edged sword ... we all know how much fun it is to hang out in the ER with sick people .... in hindsight I was afraid and I didn't want the Actemra to fail.  Being off methotrexate has been important to me and I'll do just about anything to not be on it.

I will probably have my last questionnaire to fill out at my next rheumy visit as I've been participating for the year in an international Actemra study, data gathering thing ... we are 2500 patients globally.  I hope it helps some RAers in the future .... :)

So ... am I in remission?  I don't think so cuz it doesn't take much for me to overdo it and have my body react in pain.  Am I better than I was?  Definitely .... 

The Imaginary Friend