Monday, July 16, 2012

Humira Pen Is Out; Humira Pre-Filled Syringe Is In


 That’s right folks.

After another botched Humira injection, I have decided to throw in the towel on using the pen. 

But since I feel like Humira is working well to control my RA, I e-mailed my rheumatologist to see if he could prescribe the pre-filled syringe instead.

Clearly, the information on the Internet regarding the pen is mixed.  Some people can’t stand the pain the pen causes.  If you’re like me, it’s the click that the pen makes that is so anxiety provoking.

And I think this is part of the problem.  After reading a lot on the Internet before deciding whether to go on Humira, it really freaked me out.  People were saying how awful the pen was, and it made me really scared. 

I think sometimes the Internet can be our worst enemy.  While having so much information at our fingertips is great, giving us the ability to hear from others that we might not otherwise, sometimes it can be TOO MUCH INFORMATION.

And I don’t want this post to contribute to anyone’s fear who might be reading this.  This is my experience ONLY.  It doesn’t mean your experience will be the same.  I just got very used to injecting using a regular syringe when I was on Methotrexate, and that’s clearly what I’m most comfortable with.

Like I’ve said before, in the grand scheme of things, this should not have been such a trying experience.  There certainly are worse things that I’ve experienced since I got sick.  However, the Humira pen experience has caused more tears and more anxiety than anything else in recent memory.

I didn’t want to wuss out, but at some point, when I’m four for seven (barely), I decided that I couldn’t do it anymore.  It’s just not working for me.

And the thing that really told me this is sort of messed up.  Even though the injection was botched, I was so relieved.  Despite missing a dose, I felt loads lighter that it was over.  And that shouldn’t be.

I understand those who say we should be willing to endure a certain amount of pain in order to gain ground on our health.  And while I agree with that – I was willing to deal with the pain of the Humira injection – I would have jumped at the opportunity to get a lobotomy over continuing to traumatize myself with these injections.  And that also shouldn’t be. 

I’ve been less anxious for a colonoscopy than I have been for my Humira injections, although I wasn’t actually giving myself the colonoscopy, so…
There’s a difference between someone else injecting you, and you injecting yourself.  This is why injections are typically given in a doctor’s office.  If I wanted to do this, I would have gone to medical school.

While it’s common knowledge that I have never wanted to inject myself, I moved past that fear.  And while I wanted to not be one of those people who had to go off of the pen because I couldn’t tolerate it, the pen has been a huge stumbling block for me. 

And injection after injection, it hasn’t gotten any easier.  In fact, my anxiety has only increased.  When I start having breakthrough pain a few days before, I am reminded of the impending event.  And then the day of, I am a ball of nerves.

The other thing I didn’t like was that the pen never felt the same way twice.  The Humira instructions are very adamant about rotating sites, so that may have been part of it.  Also, doing it every other week, as opposed to once a week with Methotrexate, I think it is harder to get used to. 

But this journey has been further complicated.  While my rheumatologist was very willing to make the switch, it was by no means instantaneous.  I e-mailed him Wednesday evening and he e-mailed me back quickly.  Then I called the pharmacy at the hospital on Thursday to make sure the prescription was ready before I made the trip, and the only thing they had received was a prescription for the pen.  I called my doctor’s office, and spent 15 minutes on the phone talking to a nurse. 

The staff at my rheumatologist’s office is very hit or miss.  Some people are great.  You talk to them and whatever you need gets taken care of right away.  Some people aren’t.  You have to call multiple times, tell them the same story over and over again, and still don’t always get results. 

This was my experience this time. 

I was passing by the hospital on Friday, so I went in at just before 2 p.m. to see if the prescription was ready.  They told me that nothing else had been submitted, since the incorrect prescription the day before.  So I went up to my doctor’s office to try and get things straightened out. 

As I was getting off the elevator to leave the hospital, the nurse who I had spoken to on Wednesday, who was supposed to call me back that day and didn’t, called me.  She asked if I had gotten my prescription.  I told her that no, I was at the hospital, but hadn’t been able to get it.

She told me to stay put and that she would call me back.  She never did.  I finally went back to the pharmacy.  One person tried to tell me that the pen is the only method of delivery for Humira.  I tried to calmly explain that the pen and syringe are different.  Then they told me the insurance rejected the prescription because it was too soon to fill.  I explained the situation, told them I wasn’t able to get my last dose, and that if they approved the syringes, this problem would never happen again.

I feel bad that the pharmacy had to fight with my insurance company, but honestly, better them than me.  I also feel that my rheumatologist’s office could have done a much better job of helping to me to secure the medication.  It doesn’t bode well for them if I’m off my meds.    
But at this point, that’s neither here nor there.    

I spent over four hours at the hospital.  The pharmacy closed at 6.  At 6, I was still standing there, waiting, and not knowing what was going to happen.  I didn’t know what I was going to do if they would have sent me home empty handed.  I might have refused to leave.  I’m pretty sure I would have blown a gasket. 

By this point, my nerves were so frayed that I couldn’t even think about doing the injection.

So I waited until Saturday, and I couldn’t do it.  I was just totally paralyzed by fear.  And I was totally freaking out.  Normally, my Humira shot is on Wednesday, so I was already four days behind, and starting not to feel good.

My parents and sister drove over an hour so that my mom could come and give me my injection.  I have to apologize to them and my boyfriend for causing them so much stress.  My anxiety just totally ran away from me, and I could not get it in check.  But I am a lucky girl to have such wonderful people in my life.

I want to emphasize, again, that this is only my experience and not indicative of others’.  However, if you are having problems using the pen, I would definitely talk to your doctor to see about switching to the pre-filled syringes.  I only wish that I would have been a better advocate for myself, and had tried to get the change completed sooner than I did.  I know myself well enough to know that things weren’t getting easier for me.

As I suggested in the post I submitted for the latest edition of Patients for a Moment, Humira has been my Achilles’ heel.  And I’m not ashamed to admit that.  In fact, I think we all have something that we just can’t handle when it comes to the chronic illness experience. 

Like my mom said, I’m not Hercules.  And she’s right.  We can’t all do everything, and that’s okay.  It’s frustrating to me that the Humira pen was so traumatic that I digressed in terms of being okay with needles, and being okay with injecting myself.  I was one hot mess on Saturday.  Rather than beat myself up, though, I am going to try and move forward, and hope that these injections get easier as time goes by.  I hope that because the syringe is more failsafe than the pen, I will get my confidence back, and this will no longer be the hellish ordeal that it has been for the last few months.    

10 comments:

  1. Good for you for taking care of yourself. The Humira pen would be a difficult thing to do for the vast majority of people, so don't be hard on yourself. I have never used Humira - I get Remicade - but I think I would have the same issues that you've described. Think of all the people out there who can't even handle getting blood drawn!

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  2. Good for you! I take Enbrel and I use the syringes. Years ago someone convinced me to switch to the pre-filled syringes and I hated them. The needle is larger and it stung when I used it. I am sure I could have gotten used to it. Then my doctor told me to try the pen, like you the click scared me. I immediately went back to the syringe and I am happy as a clam. Most folks don't understand how I can fill my own syringe and stick a needle in my leg but I find it doesn't hurt at all. You find what you like and insist on it. Be your own advocate! I am glad you changed to the type you like.

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  3. Good luck with yoour pre-filled syringes! Can't they just give it to you in the rheumatologist's office, or maybe at your primary care dotor's office?

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  4. I'm so glad there was another option for administering the Humira rather than the pen! And good for you for being willing to admit that it was something you just can't do and asking for another method. I'm not sure that I would have stuck with it for seven times!

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  5. Thanks for your thoughts. My 11 year old 60 lb daughter (who HATES shots- LOTS of anxiety) has just been prescribed humira and I don't know how we're going to get through this!

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  6. oh my god, thank you so much for posting this. I FUCKING HATE THIS STUPID PEN. I get the exact anxiety you described. In fact, I found this post as I was looking on the internet for what to do when I botched my injection (my second, my first trying to do it by myself. turns out I can't). Though I'm not sure I like the idea of a syringe any more....

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  7. Previously I was injecting myself with the pre-filled Humira syringe. My most recent script arrived in pen form. After watching a tutorial and reading the instructions several times I prepared to administer my first injection with the pen. Click went the pen, I felt the needle hit my skin and felt the medication run down my stomach. Re-read all the instructions, re-watched the tutorial and FIRMLY PUSHED the pen against my skin with the same results, medication running down my stomach. I don't believe the pen has enough force to penetrate my skin. Contacted the manufacturer but am still waiting for a promised call back.

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  8. I love the pen form. Just got the pre filled syringe and it hurt like a b!@#$. I have been giving myself the humira shot for three months. I will be having a chat with the pharmacy.

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  9. so glad it's not just me! I too have beaten dislike of needles to self inject methotrexate. However the sodding humria pen is a nightmare for me to do. My hands are not in best form so pushing the button is difficult, it is not natural to 'fire' something into yourself. I'm always in tears doing it. Am going to ring my consultant tomorrow to see if I can ditch the pen for needle, thank you x

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  10. calls made to consultant and healthcare at home and changed onto syringes from now on......No more pen for me...yippie! Thank you so much. If it wasn't for your post I wouldn't have known that was an option :-) x

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