Drug Day and an Important Enbrel PSA

When I first got on medication for RA, I took my methotrexate the day it was prescribed (at one of the most depressing and sober happy hours I’ve ever been to) and my Enbrel as soon as it was approved by insurance and shipped to me. I was so desperate for relief, I didn’t think about what day of the week would be most convenient to take 8 tiny pills that make me exhausted and slightly nauseous. Or which day would be best to remember to take my shot, meaning I needed to be by my refrigerator with privacy, alcohol swabs and an ice pack.

At any rate, I recently decided to maximize fun by cramming it into a weekly drug-fueled night of excitement on what is already the best night of the week: Monday. Just kidding.

Monday nights for me now consist of trying to get a kick-ass workout in after work – usually weights and hip-hop dancing. The endorphins boost my mood and working out makes me feel powerful. That helps combat the feelings of weakness that go along with being dependent on drugs, the confusion I sometimes feel when I swallow pills that I know are both a cure and poison, and the wimpiness I feel when I cringe giving myself a shot.

After that, I make myself dinner and settle in for a night of relaxing on the couch. This is only made slightly less relaxing by icing my leg while my shot warms up, then giving myself my injection of Enbrel. Dinner is only slightly less appetizing when the second course is 8 pills of methotrexate. I find that eating a lot before and a little after taking my pills helps with the nausea.

I also find that some good, distracting TV helps. 🙂

Anyway, that’s my drug day routine. What’s yours? What makes it more tolerable for you?

Also, for those of you that made it through my drug day rant, I have an Enbrel PSA: according to one of the Enbrel support nurses, the FDA has now approved Enbrel to be unrefrigerated (stored at room temperature) for up to 14 days. The only caveat is, once you take it out of refrigeration, it should remain out and must be used within 14 days. For anyone who’s tried traveling with Enbrel (especially on long overseas flights after FAA regulations no longer allow flight attendants to store passenger drugs in refrigerators), this is awesome news.

I was trying to find the post with my Enbrel travel story, but I either never typed it or it’s poorly tagged. I’ll tell it quickly here. When I was flying to Spain I had to take a three hour domestic flight, followed by a four-hour layover in Miami, an 8+ hour flight, a taxi ride, and not being let into our apartment for two extra hours. Needless to say, my ice pack thawed during my layover and my Enbrel travel case was soaked.

This meant tracking down plastic bags of ice in Miami. The best the flight attendants could do was give me a bucket of ice that turned into a cold, wet bucket of water that inevitably got all my carry-on items wet because it had to be stored under the seat but only fit beneath my feet. In all that travel time, the only place that allowed me to use their refrigerator to store my syringes of Enbrel was the cafe in Spain where we killed time. After that fun experience, this news is VERY WELCOME.

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  1. #1 by Cammy Goldmann on December 10, 2013 - 7:23 am

    I have been looking forward to your next post! I can’t believe what you wrote about tonight. I am EXACTLY on the same page as YoU! I too took my methotrexate the very day it was prescribed and filled and it happened to be a Monday! Then when enbrel was prescribed a couple months later after MRI’s confirmed I had joint damage at the base of my big toes…I had it injected the next day! I just began my fourth month of enbrel and I am so freaked out about needles I have several friends and nurses available to give me the shots every Tuesday. My doctor advised me two things…

    1) because the 8 pills made me so nauseous I take 4 in the morning and 4 at night every Monday it has helped greatly with the sick tummy part.

    2) he advised that I NOT do pills and injection all on one day (because it’s so much for our immune system to tackle) so I’m pills mon and shot tues!…..I go to an intense CORE workout cardio class on Tuesdays and Thursdays. I am currently getting the shots in my arm (it hurts a little less than the leg) my arm is sore so going to class right the shot takes my mind off of it AND loosens up my arm muscles and makes me forget about it. I do have a little burning and itching the next day….

    My enbrel nurse called this week and I too had a discussion about the I refrigerated for 14 days news! My family is going to Cabo after New Years and I was stressing out about traveling….now my only worry is WHO is going to give me the shot lol….I guess I may let my husband finally do it!

    Big hugs to you! Stay strong and keep writing …I am thrilled to have found your blog a couple of months ago….it’s a rather crappy hand we have been dealt…so much to absorb..and too much for me to really accept and research at this point….baby steps

    Hugs Cammy in California

    Sent from cammy’s ipad2!

    >

    • #2 by My RAD Life on December 10, 2013 - 4:29 pm

      Thanks for the hugs and the great advice! Maybe I will split it back into two drug days…I considered that last night actually. The point about it being a hit for your immune system is a really good one. Also, have a blast in Cabo!!!!

  2. #3 by Cammy on December 10, 2013 - 7:25 am

    I have been looking forward to your next post! I can’t believe what you wrote about tonight. I am EXACTLY on the same page as YoU! I too took my methotrexate the very day it was prescribed and filled and it happened to be a Monday! Then when enbrel was prescribed a couple months later after MRI’s confirmed I had joint damage at the base of my big toes…I had it injected the next day! I just began my fourth month of enbrel and I am so freaked out about needles I have several friends and nurses available to give me the shots every Tuesday. My doctor advised me two things…

    1) because the 8 pills made me so nauseous I take 4 in the morning and 4 at night every Monday it has helped greatly with the sick tummy part.

    2) he advised that I NOT do pills and injection all on one day (because it’s so much for our immune system to tackle) so I’m pills mon and shot tues!…..I go to an intense CORE workout cardio class on Tuesdays and Thursdays. I am currently getting the shots in my arm (it hurts a little less than the leg) my arm is sore so going to class right the shot takes my mind off of it AND loosens up my arm muscles and makes me forget about it. I do have a little burning and itching the next day….

    My enbrel nurse called this week and I too had a discussion about the I refrigerated for 14 days news! My family is going to Cabo after New Years and I was stressing out about traveling….now my only worry is WHO is going to give me the shot lol….I guess I may let my husband finally do it!

    Big hugs to you! Stay strong and keep writing …I am thrilled to have found your blog a couple of months ago….it’s a rather crappy hand we have been dealt…so much to absorb..and too much for me to really accept and research at this point….baby steps

    Hugs
    Cammy in California

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