Back in the summer of 2008, during a hospitalization, I was told we needed to “break out the big guns.” The medication I had taken for three years to calm my Crohn’s disease was doing as much for me as a Flintstone vitamin. As I laid in the hospital bed and heard the game plan I was incredibly apprehensive, petrified really…at the thought of having to give myself a painful injection for the rest of my life. There was so much unknown—How would it feel? Did I have the strength to actually inflict pain on myself? What about the side effects?
At that time I was given the choice to give myself a Humira injection every two weeks from the comfort of my home or receive Remicade treatments in the hospital every 6-8 weeks through an IV for several hours. During this time I was a morning news anchor in Wisconsin, nobody knew I battled Crohn’s. I wanted to keep my disease a secret as much as I could, so I chose Humira. Not only for the privacy, but also because I mentally didn’t want to have to go to a doctor’s office or hospital and be hooked up to medicine. To me—that would make me feel like a sicker person. I know multiple people on Remicade who love it, if it works for you—great!
For those who are on Humira—you know the beginning is the worst. The loading dose is physically, emotionally and mentally taxing. In order to get the medicine working you need to do four shots, instead of “just” one. Back in July 2008, I went to the doctor’s office with my Mom to do the first four shots and let me tell you, it’s a milestone in my disease journey I will always remember. The nurse showed me how to administer the shot on a practice squeeze ball, but made me give them all to myself in my thighs. Sitting there with a large epi-pen like syringe in my shaking hand felt so foreign. I shuddered at the thought of what it would feel like when I mustered up enough strength to push the plum-red button and feel the medicine enter my body. You do one—and quickly feel the stab of the needle and the liquid burn through your leg. That’s one. Then you have to prepare to do three more back-to-back-to back. When that was over, I remember walking out of the doctor’s office and stopping before we reached the reception desk. My Mom and I hugged and froze in the moment. That embrace spoke to me more than words could at the time. She felt for me and was and is my biggest cheerleader. It was a feeling of relief, pride and the knowingness that this was just the beginning.
Two weeks later you do two shots—a huge improvement from having to do four, but still no picnic. Unfortunately for me, the loading dose made me feel incredibly weak and dizzy. I was miserable. I couldn’t make it up 13 stairs. Work was a struggle and my energy level felt like I was on “empty” every single day. Each person responds differently to that initial loading dose—you have to tell yourself, your body is absorbing and getting accustomed to 4x a foreign medication. It’s temporary pain for long term gain.
Then, from that point forward, I was down to one shot, every other week. The first few months I would dread my Monday “shot days”…and would cry as I gave myself them alone in my apartment. In time, I grew so much more comfortable and knew the medication was making me feel better and worth the short term pain. Twenty seconds of pain for symptoms to subside and to stay off other medications—pretty great trade if you ask me! Luckily, after the loading doses my body grew accustomed and to this day I feel no side effects or symptoms when a shot is due or after I take one, something that can’t always be said about Remicade.
The past few years Humira has just became part of my life and routine—I give myself the shot every other Monday while I’m watching TV, or running out the door to work or to meet friends for dinner. Anyone who undergoes surgery is taken off Humira for the time being, so unfortunately I had to do that loading dose again last November. Luckily, this time around I felt a lot braver and didn’t experience any sickness as a result of all the shots.
Here are some tips for all my fellow Humira injectors and for their family members and friends:
- Humira is kept in the fridge, take the shot out and set a timer for one hour. I used to do 30 minutes and then a nurse told me I could do an hour, and it’s made a difference. Warming up the medication decreases discomfort.
- Five minutes before doing the shot, wash your hands and wipe your thigh or stomach with an alcohol swab. Let it dry and then hold an ice packet wrapped in a paper towel over the spot you are going to inject. Each time you do the shot, switch legs or the area on your stomach. I write R or L in my calendar because it’s hard to remember!
- Once you’ve held the ice pack on the spot, take it off and use your forearm to lean on the area for a few seconds…this warms up your skin a bit.
- Look at the medicine in the shot and tilt the pen up and down to see that it’s moving in there. There’s a small oval window you can look at it to see the clear medication.
- Take the plum-red top and gray bottom off the shot—they are labeled 1 and 2. At this point be ready to inject—any sudden movement will release the medication.
- Sit straight up with good posture and stare at a focal point on the wall, on the TV or if you’re like me stare at a photo that inspires you. I either look at a picture of my cousin Bill who’s had the two heart transplants and a kidney transplant, at a photo of my Aunt Judy who passed away from ALS, or one of my husband and I from a happy time. Look at photos of people who have shown you what it means to be strong.
- Grab the skin on your thigh or stomach and pull up and back—you want it taught, but not too much where the medication will not go in properly and spill out.
- Hold the shot straight up—90 degree angle from your skin.
- Stare at that picture and go to your happy place.
- Take a deep breath, press the button like a champ, and count out loud…“one one thousand, two one thousand, three one thousand…until 10.” When I’ve needed “extra strength” I’ll say the person’s name as my count down… “Bill, Bill, Bill…”
- Lift up the shot—hopefully you won’t see any medication (liquid). Depending on where the injection goes you may bruise immediately or bleed, but in most cases you won’t. If anything your skin may be raised a bit, but that’s a good sign! It means the medication is getting absorbed.
- When you look at the oval window of the shot it will be highlighter yellow—meaning the medication has been dispensed. Put the shot in a sharps container to properly dispose of it.
- I always text my Mom or tell my husband “Perfect shot!”
While I don’t enjoy injecting myself or getting shots—I do enjoy the benefits Humira has provided me the past eight years. This drug has done a magnificent job of silencing my symptoms and allowing me to have a great quality of life. It’s nice not to need to take 22 pills. It’s comforting to know that when I do get hospitalized doctors have told me my stays are shorter because of Humira. Many people shudder at the side effects—and think…well, there’s an increased risk of Tuberculosis, Lymphoma, this suppresses your immune system, etc…as my Mom, who’s a nurse, always tells me—look at the side effects of Tylenol and you would never take it. I can tell you since 2008 I’ve never noticed that I get more colds, viruses, etc. I haven’t noticed any difference in my immune system and my blood work (which is tracked quite often) never shows any signs of issues.
How about the cost? There’s a great program called Humira Complete which allows you to get the shots for as little as $5 a month! Click here for more details. If you need assistance for any reason, an on-call registered nurse is also available 24/7 to answer any questions or concerns by calling 1-800-4HUMIRA (1-800-448-6472). The nurse ambassadors are fantastic. If you want a nurse to come to your home and help you or teach you, they stand ready and willing.
It’s up to each person and each patient—but my advice is that you need to weigh the risks versus the benefits and look at what kind of life you want to lead.