Celebrating a major patient victory: Citrate-free Humira

I still remember the first time I felt the pain. Sitting in my GI’s office with the nurse and my mom. Fresh out of the hospital after having an abscess the size of a tennis ball in my small intestine. Knowing I had to inject myself with a painful biologic drug, four times in a row, for the loading dose. The feeling when the medication entered my body was like nothing I had ever felt before. It was an unthinkable amount of pain. It was overwhelming knowing that for the rest of my life, I would endure this same pain, multiple times a month…with no end in sight.

Fast forward more than ten years later. A total of 122 months, hundreds of injections. My reality as a Crohn’s patient just changed. IMG_2966It changed in a way that I never knew was possible. I have so many flashbacks of my journey with Humira. The tears as I felt sickly in my 20s sitting alone in my apartment and wondering why me. The dread, anxiety and anticipation every other Monday and the strength I had to muster up within myself to once again receive my medication. Holding the injection in my hand, getting in the zone and focusing my thoughts on brave family members and friends as I held down the plum colored button and felt the burn. The sad look on my son’s face as he looked in my eyes and witnessed his mama hurting.

Now, all this is a distant memory. Thanks to the Citrate-free formula developed by AbbVie and approved for adults and pediatric patients in the United States, this reality is over. A matter of days ago, I experienced my first pain free Humira injection. I had heard all the hype and excitement around it, but it was so difficult to fathom such a change in my patient experience. Here’s a video of me experiencing my first Citrate-free injection:

I’m here to tell you it’s completely painless. Less pain than a blood draw. Less than a flu shot. You feel nothing. The process, effectiveness and outcome are the same, but you don’t feel anything. It’s emotional and overwhelming in the best way. I cried for a good half hour after my first one, happy tears. Tears of joy from a woman who now knows her children will never see their mom struggle in pain. Tears of joy from someone whose eternally grateful for a medication that keeps a painful and debilitating chronic illness at bay. Tears of joy knowing that I will never have to feel that awful pain again. A pain that’s too much to put into words, that was part of my life for so long.

The sun is shining a bit brighter today. I feel a load has been lifted off my shoulders that I didn’t even realize had been there for more than 10 years. When I heard about the Citrate-free formula being approved and available in the States, I was excited—but, didn’t realize the true extent of what a difference it would make in my life. joy-2483926_1920

If you’re on Humira and living in the States, make sure you talk with your GI and specialty pharmacy to ensure your script is changed to “Citrate-free”. The extra leg work will be so worth it. It brings me so much happiness to know that young children on Humira will never have to feel the pain. It gives me peace of mind as a chronic illness patient to know that developments like this in treatment are possible and happening right now.

My call of action to doctors, specialists, healthcare teams and specialty pharmacies—please communicate this with patients. I’ve heard from countless people around the United States who heard about this for the first time from me. That’s not the way it should be. My GI gave me a heads up three months ago.

Fellow patient advocates, please feel empowered to share what this means to you and reach out to your individual communities and support networks, so people can get the ball rolling and experience this for themselves. Our voices are strong, and word of mouth is powerful.

Humira was approved for Crohn’s in 2006. I started taking the injections in 2008. Now, it’s 2018 and patients in the United States have access to the Citrate-free (pain free) formula. What’s next? Now, we can truly continue to dream.

33 thoughts on “Celebrating a major patient victory: Citrate-free Humira

    • Carol says:

      I used the old formula for two years. I didn’t even know there was a new formula. I got the new pen today and saw the new packaging and only thought it was just a packaging change. But when i injected…. omg. .. there was no pain what so ever. I almost thought that i didn’t press the pen hard enough. Then I did some google researching and realized it was the new version. I’m so thankful.

      Liked by 1 person

    • Laura says:

      Oh my gosh!!!! I couldn’t believe how horrific humira (old formula) would burn. I experienced so much pain with that injection! I am so happy it’s been changed! Thank goodness for all users! I have had to use so many other injectibles for other medical reasons and humira took the cake for how hard it was to tolerate!! What a huge victory! I am no longer on humira bc I am allergic but so happy for all the other patients whom will have to take this medicine now and in the future!

      Liked by 1 person

  1. Jay Wiser says:

    I wrote these instruction in another forum, hope this helps:

    1. Call your specialty pharmacy and see if they stock Humira CF.
    2. Contact your insurance company and make sure they’ll cover it the same as regular Humira. I had to look up the drug NDC number (https://www.humiraperspectives.com/dosing#recommended-dosing) and point them to the FDA drug lookup website (https://www.accessdata.fda.gov/scripts/cder/ndc/).
    3. Contact your doctor and ask them to prescribe Humira CF, with the same NDC number (the pen is 0074-0554-02).
    4. If the specialty pharmacy doesn’t contact you for your regularly scheduled refill, call them and ensure they have your new prescription.

    Best of luck!

    Like

  2. Suzy Crawford says:

    Thank you for this post! I use Humira for RA but this post and Jay’s tips in the comments above have helped me get the ball rolling for the CF version and pain free injections!

    Like

  3. Donna Edgar says:

    I use humira for psoriasis. just did my first citrate free shot, it was so wonderful, I had to look and make sure I got the medicine! Unbelievable difference.
    Thank you Abbvie!!!

    Like

  4. jschaldach says:

    Hi Natalie,
    Thank you so much for this article. My 11 year old son was diagnosed with Juvenike arthritis a year ago. His symptoms are worsening so the doctor has recommend we try either Enbrel or this new formulation of Humira. He’d have to take enbrel more frequently and it is less effective, so we preferred Humira. I’m so happy and relieved to read your article and hear that the new citrate-feee formula won’t be a regular, traumatic experience for my son. Thank you.

    Like

    • Natalie hayden says:

      So glad this article resonated with you! Sorry to hear about your son’s diagnosis, can’t imagine how heavily that weighs on you. I am about to do my Citrate free Humira injection–I can attest, your son will feeling NOTHING when he receives it. It’s a completely different experience. I hope that brings you peace of mind!

      Like

  5. Mary McNally says:

    I’ve been doing Humira for 4 years now, there is no way that anyone who hasn’t injected Humira in the leg can understand the pain, it’s indescribable in my opinion, the first time I injected, in my drs office under nurse instruction, I actually think my heart skipped a few beats, jaw dropping pain. I have just called my drs office and requested they send a new script for this new version, that’s what my pharmacy said I needed to do, so looking forward to the new shot, I honestly can’t even imagine!!! I would like to point out that if you are still using the old formula, injecting into the stomach takes it from a 10 to a 4, pain wise.

    Like

    • Natalie hayden says:

      I agree–unless you have experienced a Humira injection you have no clue how painful it actually is (prior to the release of the Citrate-free version). I just had a conversation with my GI this week about it. She said a drug rep was saying he had never heard of anyone mentioning it was painful, and she set him straight. Can’t wait for you to get the new script…you will truly be amazed. It doesn’t hurt AT ALL now. 🙂

      Like

  6. Jodi Schmitz says:

    I just did my first shot of citrate-free and OMG, life changing!!! I felt NOTHING!!! I almost cried when I told my hubby and boys that it DIDN’T HURT!!

    Like

  7. Software Version says:

    Stop crying! In 60 years old 135 pounds. I’m not America’a greatest generation but I inject 2x month you guys have thin skin mentally. It is not an IED.

    Like

    • Natalie hayden says:

      Your lack of empathy is disheartening and hurtful. I injected weekly for months and have been injecting 2x a month for nearly 11 years. Not quite sure what an injection and an IED have in common. Hope you find the happiness and tact you are obviously lacking.

      Liked by 1 person

  8. Jessica Rush says:

    I have had Crohn’s disease for almost 10 years now and have had one bowel resection surgery as a result. The next year I had a baby and recovered from a c-section. So, I feel like I have a decent understanding of pain. I have been on Humira for three years now, and man, those shots are the WORST! I tried to describe the pain of the shot to my husband to no avail because it is indescribably bad. I will never forget injecting the introductory dose into my thighs and afterwards crying uncontrollably. Sadly, to this day, I still have anxiety over taking my shots. Here’s to a new formula with little/no pain! Definitely a win for all Humira patients and gives us hope for new medical innovations in the future!

    Like

  9. Lesli says:

    omg i was not aware of the citrate free version until tonight. i noticed the packaging changed and i braced myself for the usual sting and pain where i can’t move for a few minutes and I felt absolutely nothing!! it was the easiest injection i have ever had. i was just changed to weekly injections so i am so thankful for this new version.

    Like

  10. Judy Johnson says:

    I was just diagnosed last month with Crohn’s. I am 37. I was prescribed azothiprine and it put me in the hospital last week with pancreatitis. Today I was told by my doctor that he wants me to start Humira. I came home crying and afraid. I hate needles. Then I found this website. I feel better after reading the comments and watching your video Natalie. Is it really painless?

    Like

    • Natalie hayden says:

      Hi Judy–First of all, so sorry to hear about your recent Crohn’s disease diagnosis. My heart goes out to you. The Citrate-free Humira is completely painless. You won’t feel a thing. I just did my injection last night. Once you get past self injecting you’ll be golden. Good luck!

      Like

  11. Tara says:

    This was life changing for sure. I dressed the other shots as well every other week. I just took the citrate free one for the first time a few minutes ago and I actually thoughts maybe it didn’t work since I felt nothing. Amazing!!!!! So happy !!

    Like

  12. Jennifer says:

    Hey guys,
    I have been on humira for over a year now and my quality of life with crohns is hugely improved. I did, however, just want to point out that the citrate free version is not available everywhere, not even in Canada and won’t be anytime soon. I know humira can be a stressful injection for many people but let’s use some tact in not to over exaggerate the pain. I know when I was starting the drug, sites like this caused so much more anxiety about the injection than necessary. To everyone reading this, the original humira injection is completely manageable. I personally know a 5-year-old who doesn’t even cry when he receives his injection (citrate free isn’t even available for paediatric patients here, unfortunately). Can’t wait for the day that citrate free is available, but the original formula is not too bad for now!

    Like

    • Natalie hayden says:

      Hi Jennifer, Thanks for your feedback. So glad the Humira is giving you improved quality of life! You are correct–the Citrate-free formula is not available everywhere, yet. United States got it after Europe. I just spoke with a representative from AbbVie and Canada and was told the following: “I’ve reached out to AbbVie Canada and they’ve assured me that making Citrate-Free HUMIRA available to Canadians is a top priority. We’re currently working through Canada’s regulatory process to obtain patient access. If Canadian patients have questions, we’d welcome them to contact AbbVie Care at 1-866-848-6472.”

      As far as using “tact”, I’ve been on Humira almost 11 years. After doing the injections for this long and talking with countless patients, advocates, drug reps and GI’s, it’s the general consensus that the pain from the injection has been a major deterrent and issue for many. Some patients need to take anti-anxiety meds prior to injecting. It’s manageable for people like you and me, but not everybody. Once you experience the Citrate-free version you will be absolutely blown away by the difference. Let’s not dumb down what a huge win this is for the patient population as a whole. Nothing stated in this article is exaggerated, it’s my personal experience. It’s sites like mine that help provide an inside look into the patient experience in an honest and transparent way.

      Like

  13. jenniferhallinan2014 says:

    Oh sweetheart, I feel your pain, literally I do! I was in tears with you in this video just waiting for the hurt and the pain! The relief on your face!!!! I just had to cry! About to give myself my first ever citrate free Humira injection! Thank you for making this video!!!

    Like

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