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Tuesday, June 7, 2011

Always speak up because that brings change

So here we are. Regular trips to Boston every few weeks. Thank God I'm only working part time at the pharmacy because the meds are exhausting. I am sleeping ALL the time. Not to mention the nausea. I swear I was back in my 1st trimester of pregnancy. I am doing ok with the injections except the spring loaded pen hurts like hell. I have to ice up and apply lidocaine before. I literally sometimes would have to re-ice because I would sit there so long trying to press the button. Knowing what was coming. I once waited 2 hours with the pen to my skin.

A few months go by and I actually break one of the Humira pens by accident. The medication is still in the pen so I decide to take it apart and use a regular syringe to administer. When I took the casing off a spring left the pen, flew across the room, hit the wall, and came back. Holy Shit! That's why it was so painful!! I used syringe and I felt nothing! I call my nurse up in Boston to tell her and she said "that's why I never prescribe them. They hurt way much". She prescribes me the medication in syringe for and there we go, anxiety gone!

My next visit to Boston I bring a left over Humira pen. I'm in the exam room and take apart the pen to show the nurse what happened. I wasn't let down. Again the spring flew across the room bounced off the wall and came back. Her mouth dropped to the floor. She asked to keep the pieces so she can show her Humira rep.

A few weeks go by and I'm back in Boston. Apparently the Humira rep has visited. Before my nurse could say anything he asked why she hasn't been prescribing the pens. They are so much better, end easier for the patient. Blah blah blah. She shows him the spring and how compressed it was inside the pen. His jaw drops because he was just pushing a product because his bosses told him to.

The rep brought the pieces back and he shows his coworkers. It gets to one of the engineers. My nurse says "I hope you don't mind. They called back and want to know if they can call you. They are redesigning the pen." Holy Crap! Little ol' me, changing the world! Ok maybe not the whole world but WOW!

To be continued...

UPDATE: I have since been informed that the pen has been altered and the spring loosened.

4 comments:

  1. OMG! Good going for you. But let me ask something...why in the world didn't they have real patients tests the stupid pens in the first place? Like why wouldn't a business use its customers to get feedback from...the end user...the patient..the one that this medicine is being produced for and is being charged alot of money to take? Done asking questions. Somehow common sense no longer exists in the business world. Can you tell I worked years and years in that world and 6 of them was in an engineering department but not as an engineer. Oh the stories I could tell :-) One of my favorite sayings...it's as clear as mud. That about sums up why they never asked people like you for feedback.

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  2. I tried Humira for a short time in 2012 when we figured out that Enbrel wasn't working for me anymore. Even though my doctor ordered the syringe the pharmacy changed it to the pen...so I tried it, and it was AWFUL! I made them write the order again and told the pharmacy I would go to a competitor if they wouldn't get me the syringe. LOL then I stopped using Humira because it wasn't effective but I chalked it up to a learning experience and anytime I hear someone talking about the pen I warn them.

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  3. I don't have a profile yet, I just came across your blog, but read this post and had to reply!! They may have adjusted the design of the pen, but it can't be any better. I have been using it for almost a year now, and I absolutely HATE it. I dread saturday every two weeks. I started out having to numb the area as well, but found that the added time of waiting for the lidocaine made the anxiety of waiting even worse. I have had many a time of sitting there, pen poised, unable to hit the button. Mostly due to one of my first injections going horribly wrong. I had the skin pinched and everything ready to go, and for some reason pulled the pen at the last second, shooting medication across the room. No wonder they hurt so much, the speed that stuff comes out.. Anyway, I am going to continue reading! Thank you so much for sharing your stories!

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    1. Yes they are still painful. The sting is mostly from the preservatives in the medication. Unless you get an infusion instead of shots you won't ever get around that. I apply a lidocaine patch about an hour before. They are stronger than the cream. I let the shot warm to room temperature. I ice 15 minutes before. It has reduced to sting to about 10 seconds. Good luck!

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