You’re told by your gastroenterologist you need a biologic to treat your IBD and that medication is received through infusion. Thoughts race through your mind–what’s it going to be like hooked up to an IV receiving your medicine? It’s completely normal to feel anxious, nervous, and uncertain. I’ve done self-injections since 2008, and never have needed to receive my medication through infusion, but I know that’s not the case for many.
This week on Lights, Camera, Crohn’s we hear from patient advocate Jenna Ziegler. Jenna was diagnosed with ulcerative colitis in 2014 and has recently added enteropathic arthritis and a rare autoimmune non-alcohol-related liver disease called primary sclerosing cholangitis (PSC) to the list.
Over the years, Jenna has learned how to prepare for infusions so that she can walk into the outpatient center with confidence. Check out her empowering tips for doing so—whether your infusions are at a medical center or at home!
Do Your Prep Work
Know if you’ll be given Benadryl. Some biologics require pre-medications that help prevent adverse reactions. These meds may include Tylenol, prednisone, or Benadryl. Find out ahead of time if you’ll be given Benadryl. Knowing you’ll be sleepy at and after your infusion can help you decide if you’ll need a driver and if you need to make arrangements for the rest of your day.
Plan out the rest of your day. You may be tired after your infusion—especially if you’re given Benadryl! Weeks before your infusion, make proper post-infusion arrangements .Maybe you’ll want to take the day off work or arrange for childcare so you can take a long nap or reschedule that evening’s outing to another day. Jenna encourages you to schedule time in your calendar to recuperate after the infusion.
Know your dosing and required blood work. By knowing your dose and what labs that will be drawn, you’ll feel more in control of your day. Ask your doctor for your dose and what (if any) labs the nurse will draw at your infusion. Then, when you arrive, you can double check that these things are correct.
The Day Before Your Infusion
The day before your infusion is critical: make sure you’re drinking enough water!
“Infusions require IVs, so it may ease your nerves to do everything in your power to make your veins as plump and visible as possible. I drink one gallon of water the day before my infusion. I chug 32 ounces every three hours and set reminders to keep me accountable. When I do this, my infusion nurse almost always gets my IV in with one poke! Also, a nurse told me that sodium retains water, so eating salty snacks the day before will also help keep water in your veins. Of course, run this by your doctor first!”
The Day Of your Infusion
Today’s the day! Here are three tips to help remove some of those infusion-day nerves.
1. Eat a proper meal. The day of your infusion, you want to fuel your body with healthy foods. This means a balanced meal with both protein and carbs. This is especially important if you’ll receive Benadryl or get blood drawn!
2. Dress in layers. One of the best things you can do for yourself is make sure you’re comfortable for your infusion.
“I find infusion centers very cold, so I suggest you dress in layers—just make sure you choose something where your veins are easily accessible. I tend to wear warm shoes, comfy pants, a long-sleeved shirt over a tank top, and a sweatshirt. Cozy and practical!”
3. Bring entertainment. Different biologic infusions vary in length, so if you’ll be there for a while, bring something to keep you entertained! Some of Jenna’s personal favorites are: books, journal, laptop, headphones, and snacks. If you receive home infusions, be sure to gather your supplies by your couch or the location in your house where you plan to receive the medication.
At Your Infusion
When you arrive at your infusion center, you’ll check in, probably sign some forms, and your nurse will show you to your chair. It’s okay if you’re feeling nervous. But remember, as the patient, you are empowered. Here are Jenna’s top tips to ease your nerves.
Ask for a warm blanket and pillow. Not only will this help you get comfortable, but placing a warm blanket over your arm will help prepare your vein for the IV.
Tell the nurse which arm/vein you prefer. Don’t be afraid to tell your nurse which vein you want them to poke. They’ll probably ask, but if they don’t, don’t be afraid to voice your preference.
Take your Benadryl slowly. If Benadryl is one of your pre-meds, they’ll probably either give you a pill or push it through your IV. If it’s via IV, ask the nurse to go slowly. Pushing the syringe too fast may make you feel lightheaded or nauseous. Again, don’t be afraid to speak up.
Confirm the info on your medication bag is correct. When the nurse is hooking your medication bag to your IV, it may make you feel better to see the label for yourself. Ask the nurse to show it to you, and you can personally ensure it has the correct patient name, medication, and dose.
After Your Infusion
You did it! Your infusion is over. Best of all, you’ve already planned out the rest of your day, so now you don’t have to stress about your to-do list.
“I encourage you to listen to your body—you might want to take a nap, take a hot bath, or have a relaxing night in with your family and pizza delivery. You’ve had a long day and you deserve to destress and relax.”
Remember, You Are Empowered
Over time, getting your infusions will become easier. Normal. Routine. And, one day, maybe even relaxing.
“I would have never thought that I’d find peace in my infusion days—these days that once made me nervous and stressed. But I now see my infusion days as relaxing, self-care days. This will come with time, and it starts with one thing: remembering that you are strong, empowered, and your own best advocate.”
When it comes to the biologic, Humira (adalimumab), I am somewhat of an OG. I’ve taken Humira to manage and treat my Crohn’s disease since July 2008. We go wayyy back. Since my first loading dose 14 years ago, I’ve had hospitalizations, had bowel resection surgery, gotten engaged and married, traveled, worked full time, had three children, breastfed, been a stay-at-home mom…the list goes on. I’ll never forget how overwhelming it felt when I was lying in a hospital bed with an abscess the size of a tennis ball in my small intestine and when my GI at the time told me “It was time to break out the big guns.” The big guns being biologics.
My mom and I were upset. We were frantic. We were Googling. We were fearful of what this would mean for my childbearing years. I couldn’t fathom the thought of giving myself injections or getting infusions. My world came to a standstill. In that moment, I would have given anything to have a resource like this. An article that outlines patient experiences across the board. The good, the bad, the ugly. I write these articles, so you feel empowered and educated when you take the plunge or when you are forced to switch medications because another biologic fails you. I write these articles, so you feel confident in making informed choices and realize that the “big guns” are oftentimes necessary and not as scary as they sound.
As you read this article and others like it, please remember these are individual experiences. Just because one person had a terrible response or reaction doesn’t mean you will. Just because I haven’t had any side effects and have been able to stay on Humira for more than 14 years, doesn’t mean the same will be the case for you. Use these experiences to level your expectations and have a better grasp of what it’s like to be someone with IBD on a biologic drug and make an informed choice with your gastroenterologist.
If you haven’t done so already, be sure to check out previous Patient Experience articles I’ve shared on Lights, Camera, Crohn’s about:
For those who are “new” to Humira, those who are preparing to do their loading dose, or those who aren’t familiar with the drug—in the United States a new and MUCH improved Citrate-free formula came to market for pediatrics and adults in late summer/early fall 2018. I did my first Citrate-free or as many of us call them, “pain free” injection in September 2018 while pregnant with my second child. If you’ve been on Humira for a long time like me or tried it prior to that time, you know how painful the injections used to be and how much easier they are now. It’s a gamechanger. The loading dose used to be four injections—all in the same sitting that felt like liquid fire were going through your leg or abdomen. Fast forward to 2018, not only is the needle gauge smaller, but the formula no longer stings. Click here to watch the video of me experiencing Citrate-free Humira for the first time while pregnant.
I went from dreading my injections (even a decade in) to doing injections on my couch and smiling ear to ear while my kids watch me because I feel next to nothing. This is important context for this article. Some of the experiences you will hear will be from people who never had a chance to experience Citrate-free Humira, and others who say the shot is “easy” to do most likely started or were switched over to the pain-free version. This change in the formula has been an incredible win for anyone on Humira in the United States. The loading dose not only won’t hurt but is only two injections now versus the original four. The challenge is getting used to the mechanics of doing a self-injection and getting into the right headspace each time you’re due for a dose. Regardless of whether it hurts or not, you are still injecting a heavy-duty medication, which suppresses your immune system, into your body. I’m often asked if I get “sicker” being immunocompromised and being a mom of little ones—my answer to that is no. I am mindful of washing my hands and not eating or drinking off anyone. My GI has me do “safety labs” every three months to monitor my bloodwork, along with an annual colonoscopy.
Debbie: “I was on Humira for four years. I responded well at first and liked the ease of doing injections myself. The Citrate-free version was much better and less painful than the original version. I unfortunately ended up developing antibodies and have been switched to Stelara. I didn’t have any side effects with Humira other than some itchiness at the injection site. Ice helped a lot with that.”
Melanie: “After a reaction to Remicade, I was so anxious to try another biologic. This was in 2009 and Humira hurt so much. I had a massive panic attack trying to do the loading dose of the original version. I was 19 at the time. I couldn’t continue with it. Now, I’m on Cimzia, but had to take a mental health break from biologics for a few years.”
Brad: “I started Humira back in March of this year. It’s been a complete gamechanger for me. Humira has me in clinical remission as of my last colonoscopy. I don’t have much reaction to it. Sometimes, the injection can hurt a little bit, but usually not at all. I’m shocked at how easy it’s been. I was originally very nervous about starting an injectable.”
Jenn: “Humira was traumatizing. It took well over a year for me to self-inject without stressing and crying beforehand as the injection hurt so much. While it did provide relief from symptoms for a while, the reaction I ended up getting was significant, and impacted my ability to live normally. So not only had my Crohn’s symptoms returned, but they were also joined by additional symptoms caused from a reaction I was having to the medication. I will never not be a proponent of taking meds as they do help, but I will also never forget the experiences I lived due to them.”
Natasha: “I was in the pediatric trials for Humira. I don’t remember it doing much, but almost 15 years later, I’m still traumatized by the trigger mechanism and feel the phantom pains in my legs from doing them for so long. Anytime a new medication it brought up and it’s a shot, I ask if there are self-administered options vs the auto injector. The PTSD is bad.”
**It should be noted Humira can be administered with an auto-injector pen (where you press down on a button and there’s a clicking sound) or with a syringe where you draw up the medication. I have only used the auto-injector and prefer the ease of it, but it’s all personal preference and what you are comfortable with.**
A mixed bag of experiences
Sofia is now on Stelara after having surgery to remove some of her bowel. When she thinks back to her time on Humira, it’s not a pleasant memory.
“I experienced all the normal flare up symptoms while taking Humira and gained a lot of weight. I just remember my self-esteem plummeted as well as my hopes for remission.”
Kathy: “I was on Remicade, but I’ve been on Humira now for five years and have had great results with minimal side effects.”
Kaitlyn: “I have been on Humira for a few months to treat my Crohn’s disease and Hidradenitis Supprativa and it has been life-changing. My Crohn’s is in microbial remission, and I no longer have to get weekly, painful steroid injections for my HS.”
Jessica: “I’ve been on Humira for four years and my last colonoscopy showed there was mucosal healing and no active Crohn’s. I inject every 14 days and it has gotten easier, especially when I inject and tell myself that it is healing my body. Then, I don’t feel the shot. I’m very thankful for it!”
Myisha was on Humira for a year and then had a major allergic reaction.
“The last injection I gave myself, my face, lips, and mouth swelled up and I got lightheaded. My husband immediately called my GI and I had to be given an EPI pen along with 4 Benadryl intravenously after being rushed to the emergency room. I experienced hypersensitivity anaphylaxis and angioneurotic edema.”
Keyla: “When I was on Humira, it made me lose my hair. I felt terrible on it, and I never noticed much improvement with my IBD.”
Danielle has struggled to find a biologic that manages her disease. Both Humira and Entyvio failed her. She’s now on Stelara.
“I was on Humira for three months in 2021. It worked amazing right off the bat, then suddenly I had no response whatsoever. The injections were quite traumatic for me as I had one injection needle fall apart as I was giving the injection.”
Sarah: “Humira has improved my life and helped manage my Crohn’s symptoms and allowed me to eat a wider variety of foods then when on previous medications. However, there have been some compromises on my part. I’ve dealt with some bad injection site reactions that have caused me to have to take allergy medication prior to administering it to help manage the reaction. I’ve also experienced severe sinus congestion and uveitis that I did not have prior to taking Humira. I’ve lost some sense of smell due to how bad my congestion can get, and I can’t touch or rub my eyes without risking a flare up of uveitis. Overall, I would say that it has been worth taking Humira. I’ve learned to manage my side effects and have gotten over my fear or self-injection.”
Catie: “My experience with Humira was good at the beginning. The medicine helped me achieve remission. The injections were always so painful no matter what tricks I tried. I ended up getting drug-induced lupus from Humira, so I went off the drug. The drug-induced lupus took more than a year to recover from—it was awful.”
Hayley: “I was on Humira for a year and was doing great on it, practically in remission. Unfortunately, I developed psoriasis (which I’ve been told is a rare allergic reaction to the drug itself). My sister who has Crohn’s was also on Humira and had the same reaction. I wish I could’ve stayed on it longer because it was easy and helped me so much, but unfortunately, I had to come off it. It was my first biologic and gave me a lot of hope!”
Krista: “I was on Humira for about 6 months. It was working great—other than extremely painful injector pen that I dreaded using every month. I started to develop scaly patches on my legs, back, stomach, and scalp. My hair started falling out where the scaly patches came up on my scalp. My dermatologist thought I had biologic-induced psoriasis, so I stopped taking it. My biopsies came back negative for psoriasis, but I still ended up switching medications.”
Melissa: “I was on Humira in the past. It didn’t work for me and caused me so many issues. My body itched so badly while on it. I would scratch sores on my body from it. My joints ached all the time. And on top of it, my ulcerative colitis got worse while on it.”
Adriana: “I was on Humira for a year. I did weekly injections, but they wanted to increase my dosage to two injections. For me, it didn’t work (as with a lot of drugs I was on), but out of all of them, it worked best at making me feel better. I don’t remember having too many side effects from Humira besides slight bruising around the injection site, but definitely worth a try!”
Ellie: “I started Humira in 2019 after a four-month bout with steroids. I went into remission a month later after only two injections. I have remained in remission ever since.”
Dana: “I was on Humira for around 2 years. It put me into remission, and I was doing very well, but then I started to have Crohn’s symptoms. My doctor thought about increasing the frequency of my dosage, but my blood levels were adequate, and she didn’t want them to become too elevated with an increase in dosage. I also developed severe psoriasis on my scalp as a side effect. I ended up flaring and having to stop Humira to try something else.”
Jessica: “Humira has been great for me! Really no side effects. I did have to increase my dose to weekly because I metabolize medication too quickly.”
Phil: “I had a small bowel resection in 2004 and after a 10-year remission, my Crohn’s became active again. I was put on Humira, and it was amazing for about 7 years with a few side effects, biggest one being hypersensitivity to the sun. I miss being on Humira because it also helped my joint pain and psoriasis.”
Stacey: “Humira was my final effort to save my large intestine and felt pretty good on it! Aside from horrid cystic bacne, which isn’t listed as a documented side effect (but I swear there was an association there!), I had no side effects, and I felt great on Humira! It gave me a quality of life! I was on Humira when I made the hard choice to have a total colectomy, and the disease had spread since my scope four months prior. Goes to show that symptoms don’t always correlate with inflammation. But I’m grateful for my experience and the opportunity to safely take Humira.”
Pregnancy and motherhood with Humira
As an IBD mom of three, I stayed on Humira until 39 weeks pregnant with my oldest, and 37 weeks with my second and third child. I had scheduled c-sections with all three, so I was able to coordinate my injection schedule with my GI ahead of time. I breastfed my second child for about 6 months and supplemented and just finished exclusively breastfeeding my 14-month-old—all while on Humira. I have three, perfectly healthy children and had flawless, Crohn’s-free pregnancies. I also did not experience post-partum flares and I credit that to the fact I stayed on my medication and picked it right back up the day we brought the babies home from the hospital.
Check out these helpful resources for pregnancy and biologics and have long-term research that shows the safety and efficacy of staying on Humira through the entire family planning process, pregnancy, and beyond:
Dani: “My experience with Humira has been wonderful. I’ve been taking Humira for two years. The nurse ambassadors are so nice and helpful. I was nervous about the injections, but they really are so easy and don’t hurt. Humira has helped me to feel the best I’ve felt since my Crohn’s diagnosis 4.5 years ago. I stayed on Humira through my pregnancy, and I had no Crohn’s related issues during or after. It’s been a life-changer. Most days, I almost forget I have a chronic illness. I’m praying things stay like this, at least until we have another child.”
Stephanie: “I have been on Humira since 2016. I was diagnosed with ulcerative colitis postpartum after my first baby in 2015 and was incredibly sick. I had multiple blood transfusions, tons of steroids, etc. I had some reactions to Humira when I started taking it (skin rashes and almost withdrawal-like symptoms) before the two weeks was over, which almost presented itself like lupus, so I was put on weekly injections and have been doing that ever since. After I was put on Humira, it was a lifesaver. I felt the best I had in forever. Since having my second child in 2019, it’s been more up and down. At my next colonoscopy, we will look to see if I have inflammation still and if I do, I will go off Humira (which is so scary to me) and try something new.”
Katie: “I have been on Humira for 7 months. I was completely terrified to be on Humira, but I was so sick, and knew I needed to do something for not only myself, but my husband and my kids. Humira has gotten me back to the point of feeling back to my normal self. The only side effect I noticed for the first few injections is I would feel absolutely exhausted that next night. It’s super quick and I get on with life as usual!”
Sarah: “I have been on Humira for a little over a year now. I was on it while pregnant with my son. It was an easy process. But now that I’m 4 months postpartum, I am experiencing some weird side effects. My liver levels are elevated, and I am getting symptoms back. My GI and rheumatologist are thinking of moving me to once a week or adding another medication. I am fearful they will switch me off or add things and I won’t be able to breastfeed any longer. Humira has been wonderful, and I am just nervous my body has begun to build antibodies against it.”
Cece: “I have struggled with my ulcerative colitis symptoms on and off since I was 19. At 36 years old, after trying 3 years to get pregnant, I had a colonoscopy that revealed active inflammation. That was what finally pushed me to get on Humira. My symptoms settled down and luckily, I’ve been in remission and feeling great ulcerative colitis-wise through IVF, pregnancy, and breastfeeding.”
The Pediatric patient point of view
Emily is a 13-year-old who has been on Humira for three years. She says Humira has done a lot to help her get Crohn’s under control.
“Doing injections myself has helped. It feels better to “be in control” of giving yourself the shot. I’ve been having less stomach pains and less joint pains from Humira. My joint pain and stomach aches used to be really bad. I used to cry myself asleep at night because how bad the pain was for both my joints and stomach. Now that rarely happens. Yes, I still get joint pains, but not to the point where I start crying. I get a little tired after the shot, but it helps me a lot. So many positives.”
Celia is 15-years-old and started Humira in October 2021. About two months after her initial loading dose, she started to notice less bowel movements, but still had urgency and abdominal cramping. Her GI decided to increase her dose to 80 mg since her inflammation markers were elevated and she was flaring. (Typically, we are put on 40 mg injections, twice a month).
“I feel better! I still have my bad days and have had minor issues. I’m hopeful that this will be the medicine to get me into remission! On the mental side of things, I have struggled with injection anxiety. I have never been afraid of needles, and I’m still not, but I overthink every injection. That has been my greatest struggle on Humira, but I’m hopeful over time I’ll overcome it!”
Cindy’s 8-year-old daughter is on Humira. She says the various worries and challenges all give way in the end to gratitude.
“Humira is saving my daughter’s life and giving her a tremendous quality of life. Thirty years ago, an 8-year-old would have had such a different trajectory my she is experiencing and hopefully will continue to have. I love science.”
Struggles with access to Humira
Regardless of the biologic you are on, dealing with insurance, prior authorizations, and specialty pharmacies can make access to drugs like Humira a challenge. AbbVie (the maker of Humira) offers several programs to help streamline the process and take some of the burden off patients.
Once you enroll in Humira Complete, you are connected with a Nurse Ambassador who will speak with you directly (and even do in-person visits) to help you gain confidence and understanding about everything from administering your medication to any side effects you may be dealing with. Humira Complete offers a Patient Savings Card and Prescription rebates, and offers injection training through videos, an App to help you stay on track, and 24/7 availability should you need to reach someone. The phone number for Humira Complete is 1-800-4HUMIRA (1-800-448-6472).
Even though Humira Complete exists and has helped me many times, there are still many patients dealing with access issues or completely unaware of the fact that the programs and savings are available:
Emily: “I have been on Humira since October of last year and it has been both great and horrible for me. Remicade stopped working for me after 5 years and Humira was able to help calm down the flare I had been experiencing. I learned with time that at home injections weren’t something to fear. Humira is very convenient. Humira came with large bills and a battle with insurance and Accredo pharmacy. Every month, unnecessary stress had been added to my already full college schedule. In between classes I found myself calling multiple people to make sure my medication was going to arrive on time and that it didn’t cost me $4,000 each time. I’ve had issues almost every single time I refill my medicine. It almost makes me want to switch medicine just so I don’t have to deal with it, which is unfortunate because the medicine itself helps me.”
Sydney: “I just came off Humira. It worked great until it didn’t anymore. The formula changed a few years ago, which made it a lot more tolerable, but for a very tiny human, the auto injector caused some atrocious bruises. I ended up having to use syringes because of the bruising. It was a fight with insurance almost every time I needed a re-fill. The medication was good, but the stress trying to get it was almost not worth it. I only reached remission for about a year on it and then my body figured it out.”
Sam: “I have been on Humira for five years. I would say the issues aren’t the drug itself. Insurance companies make it so hard to get access. Ordering my medication from a specialty pharmacy is the worst.”
Christie: “I have been on Humira for three years after being diagnosed with ulcerative colitis in early 2019. The decision to begin taking Humira was a tough one, but I wanted to try anything to reach remission. While I have had a few insurance hiccups here and there, my experience with Humira has been great. I am enrolled in the Humira Complete Program, where I can track my injections and a nurse ambassador calls me once a month to check in. The resources AbbVie offers are incredibly helpful. Overall, I credit Humira for getting me into symptomatic and endoscopic remission.”
All in all, you must always weigh the risks versus the benefits when determining a treatment plan with your physician, regardless of the medication. I personally have not dealt with side effects and have relied on Humira to help me maintain my remission and feel my best so I can be present for my family. What started out as a shocking change in my life, is now just part of my routine. Be patient with yourself and whether the injection hurts or not, reward yourself after. I usually enjoy some ice cream while watching reality TV. Giving yourself an injection isn’t easy, treat yourself to something for being a compliant patient who is doing all you can to help treat an unpredictable and complicated disease. And most importantly, remember you are not alone in your fears, your struggles, and your worries.
This blog article is sponsored by Portal Instruments. All opinions and experiences shared are my own.
I’ll always remember how I felt the moment I was told I needed to go on a biologic drug to try and manage and control my Crohn’s disease. It was Fourth of July weekend 2008. My gastroenterologist walked into my hospital room and told me it was time to “break out the big guns,” meaning starting to get medication through an infusion or through a self-injection. I was a morning news anchor at the time in Wisconsin, three years into my patient journey. I knew without a doubt, for privacy reasons, and keeping my chronic health issue under the radar, that doing an injection in the comfort of my apartment was the best choice. As I watched the fireworks reflect off the hospital room window with my mom, tears flowed down my face. I didn’t know how on God’s green Earth I was ever going to be able to give myself an injection for the rest of my life.
I was never a huge fan of needles prior to my diagnosis. Once you have Inflammatory Bowel Disease, needles unfortunately are all part of it. While we may get desensitized, patients would give anything to be able to treat their disease without needles. When I started on my biologic, my mom and I went to my gastroenterologist office and a nurse told me I needed to do four, painful injections in my thighs because at the time I didn’t have enough fat on my stomach. I was shaking like a leaf. I had no idea what to expect, I was about to inflict pain on myself, the injector felt so foreign in my sweaty palms, and I was scared about not only how much it was going to hurt, but also the long-term side effects the medication could cause to my body.
I did the first injection and it felt like liquid fire burning through my skin. I couldn’t believe I had to sit there and do three more, back…to back…to back. The experience was traumatizing. When I finally did all four, my mom and I walked into the hallway and I embraced her, crying because of my reality, and knowing that in two weeks I would need to inject two more needles into my thighs for the final loading dose. Since July 2008, I’ve done a self-injection every other Monday and for a short time weekly, while I was flaring. That’s more than 2,600 shots.
Dreading “shot day”
The first few years I would absolutely dread my “shot day” and deal with the looming dread each week. Early on I would get emotional during the process and feel bad for myself. I was only 25 years old. It made me feel like I was a sickly person. My peers couldn’t relate. It was isolating and overwhelming. Every time I open my fridge, the box of injections is staring back at me as a constant reminder of what’s to come.
Doing my injections as an IBD mom
Fast forward to present day, I’m now a 38-year-old mom of three. Luckily, the formula for the medication was changed in 2018, making the drug virtually “pain-free”, but there are times I still feel the needle. Even though I have my medication process down to a science, I still wish I didn’t have to do it and I usually wait until Monday nights to do it. The timing is moreso out of habit, because when I was a morning news anchor there was no way I was going to deal with an injection at 2 a.m. I started a tradition of doing my injection while watching the Bachelor/Bachelorette, and that’s carried over now that I have three young children, often waiting until after their bedtimes. Each time after I’m done with my shot, I text my mom to let her know how it went. She’s a nurse and has been my greatest support with my IBD since the day I was diagnosed.
Sometimes my 5-year-old and 3-year-old watch me do my injection and each time they are intrigued. I’m sure my 11-month-old will be the same once he starts to gain an understanding of what I’m doing. It makes me sad that they often witness me doing my injection, but they are also my greatest motivation to be strong and smile through it. Watching me doing injections has made my kids incredibly brave at the pediatrician when it’s time for them to get their immunizations. Because I have little ones, I have to be mindful of disposing of my medication properly and keeping the Sharps disposal container out of harm’s way. We keep Sharps Containers up high in a cubby hole in our laundry room and I dispose of the injector pen immediately.
As an IBD mom, my greatest fear is passing along my Crohn’s to my children. While the risk is low, it’s there. I hope and pray my children won’t ever need to receive a biologic medication whether it’s through self-injection or infusion. For me, there’s no end in sight, I’m expected to be on my medication (if it remains therapeutic) for the rest of my life. Thinking of my babies having to deal with needles and being forced to inflict pain on them would be difficult for me and only add to the guilt.
The future holds so much promise when it comes to drug delivery without a needle. My hope is that in the years to come, other people won’t have to succumb to the same anxiety, pain, and worry I’ve had to deal with for more than a decade.
It was the first biologic created to treat Crohn’s disease (and later ulcerative colitis). Remicade (Infliximab) was approved by the FDA in 1998 for Crohn’s and 2005 for UC. The medication set the stage for a new way of treating and targeting IBD. A lot has changed in the last 23 years when it comes to treating IBD with biologics (Crohn’s and Colitis Foundation Biologic Fact Sheet). As patients we’re “lucky” that more options are available, and several medications are on the horizon. But Remicade remains a tried-and-true treatment option for IBD patients.
A few weeks back, I shared an article on my blog entitled, “The Patient Experience: What The IBD Community Says About Entyvio.” The article featured viewpoints, experiences, and tips/tricks from several people with IBD who are currently taking Entyvio or have in the past. That article and this one have NO affiliation or guidance from pharma. This is strictly created from the IBD patient experience.
The discussion on Entyvio was well-received and from there, I decided to do an exposé if you will, about other biologics, too. When I was told I needed to start a biologic while lying in a hospital bed in 2008, my mind was racing. I felt like I had nowhere to turn. There were only two options at the time. I didn’t know what resource to trust or where to go for information. My hope is that these articles help comfort you as you make these important, lifechanging health decisions, and alleviate a bit of the fear associated with being on a biologic drug long-term. Use these candid quotes to serve as your roadmap to navigate the unknown.
Before we dig deep into Remicade from the patient and caregiver perspective—a reminder that much like the way IBD presents and manifests in each of us, each person’s experience with biologics is unique to them. Remember that your experience could be better and could be worse.
What does anti-TNF mean?
Each biologic is associated as a class of drug. Remicade is an anti-TNF, meaning that the medication blocks a protein in your immune system called TNF-alpha. That protein can cause inflammation in your body. People with IBD produce too much TNF-alpha, which can cause our immune systems to mistakenly attack cells in the GI tract. Anti-TNF biologics work to regulate this protein in our bodies.
The Patient Voice
In this article you’ll hear from those who just started Remicade in the last week to someone who has been receiving infusions for 21 years! Thanks to each and every person who offered input, I wasn’t able to feature everyone’s perspective, but your narrative helped guide this piece.
Amanda Rowe started Remicade nine months ago. She was hesitant to start a biologic, but ever since taking the plunge, she hasn’t looked back.
“I haven’t had any issues. I get pre-meds of Benadryl and Solumedrol because I got slightly itchy during one infusion. It’s a nice quiet time to sleep or I bring my phone and earbuds and watch a show. It’s 2 hours where I get a break from hearing, “Mom, I need…” I currently have no active disease after being in a bad flare for two years. I flared that long because I was afraid of starting a biologic. My GI explained everything to me and calmed my fears about possible side effects and I finally agreed. I just wish I would have started Remicade sooner, so I could have felt the way I do now.”
Phylicia Petit has Crohn’s and has been receiving Remicade infusions since she was a teenager 11 years ago, she’s grateful the biologic has worked well for her.
“I’ve had a dosage increase and have added mesalamine for better inflammation control. Other than those changes, I’ve been relatively symptom-free, which is a major blessing! I would highly recommend having home health do your infusions. I haven’t had to take off work for my infusions and it’s so nice to be in the comfort of my home…especially with COVID! It’s also cheaper for insurance. I use Janssen Care Path for financial help. It helps to cover your infusion costs. I fortunately have never had any side effects.”
IBD is a family affair for Kara Cady. She has ulcerative colitis; her dad was diagnosed with Crohn’s as a teen and her little sister was recently diagnosed with UC. She just started Remicade last week.
“I’m still on the loading doses. The infusion process is long! It’s about 3 hours for me. I am able to get mine at my GI’s office. I can bring my laptop and work from there. I was super nervous for my initial dose, but my main “issues” are feeling tired, and having a headache and sore throat after. I’m looking forward to getting on my regular Remicade schedule, as I’ve been in flare for about 6 months.”
Laura Steiner is a nurse practitioner with ulcerative colitis who has depended on Remicade for over seven years.
“I have had to increase my dosage and shorten the interval but continue to stay in remission while on it. I’m usually wiped out the day of and the day after. I get my infusions on Fridays, so I have the weekend to recover. The only downside is many major insurance companies are forcing patients to switch to biosimilars, so after 62 doses of Remicade, my next infusion in June will be Inflectra. I’m hoping it will work equally as well.”
Laura is not alone in this fear and dealing with barriers to care and insurance coverage is a reality for many. While working on this article, a social worker from an insurance company reached out to me and said in the last week alone she’s dealt with several cases of people who have had their Remicade denied. She’s helping them through appeals. Until you’re a person who is dependent on a medication for improved quality of life, where timing is of the essence for receiving it, it’s difficult to grasp the magnitude and the pressure of not being able to receive your medication when you need it and risking a flare spiraling out of control or losing your remission.
Meg Bender-Stephanski was on Remicade to treat her Crohn’s for about a year and half. It worked well for her, but she says the infusions were not only inconvenient but costly, so she ended up switching biologics.
“I was going to college in Oregon while my main insurance was based in California, and the out of pocket costs the first few infusions in Oregon were around $18,000. It ended up being cheaper for me to fly home every 8 weeks for an infusion than it was to receive it in Oregon! I also really wanted to study abroad, and it was incredibly difficult to figure out the logistics. Remicade did work well for me and sometimes I have regrets for switching off it for personal reasons.”
Advice for Infusion Days
Kelly Dwyer was diagnosed with Crohn’s in 2018, but experienced symptoms for several years prior. She has great advice for gearing up for infusion day and beyond.
Take along a caregiver for your first infusion, if you can, just in case you have a reaction.
Make sure you make a plan for pre-meds or no pre-meds with your GI before you go to the infusion center, so you don’t get surprised by their policies. Kelly takes Zyrtec the night before, so she doesn’t get drowsy and Tylenol right before the infusion to alleviate the headaches she gets towards the end of an infusion.
The first few infusions should be slow infusions, to make sure you don’t have a reaction. Kelly has continued to receive hers at a slow rate (2-2.5 hours) because her blood pressure tends to bottom out when the Remicade is pushed to a higher rate. But for many, a higher rate works and helps the infusion go quicker.
Switch arms and spots for your IV. Kelly says she saves her “big veins” for times when the nurses need to do a blood draw before the infusion and have to use a larger gauge needle.
Hydrate well the morning of the infusion and bring along a heating pad, as it may help to wrap it around your arm if you’re dehydrated before the IV is started.
Openly communicate with your infusion nurses. Let them know if you feel weird or off in any way. Nurses have seen it all and can be very reassuring and helpful, but you need to give them feedback so they can help you and act right away if you’re starting to feel poorly.
Your reaction one day may be different the next. Kelly says she doesn’t have consistent reactions each time, so it’s important to be vigilant and always be prepared to expect the unexpected.
For Kelly, she doesn’t start to feel the effects of Remicade for a few hours after the infusion. She gradually starts to feel more and more grumpy and tired. She gets a very particular kind of fatigue the day of her infusion. She says it’s a very numbing, all-encompassing, tiring feeling.
Be aware of what dosage you’ve been prescribed. Understand there are several variables that your GI can change if the Remicade isn’t working immediately or enough. The interval time between infusions can be shortened, and/or the concentration of the medication can be increased.
Remicade is often given with other immunomodulators, like Methotrexate. Talk with your GI about scheduling and timing for the infusions with your other medications.
If you’re just getting started on a biologic, your GI will likely tell you to get vaccinated for Shingles and Pneumonia before starting. You’ll also need to do an annual TB test.
Kelly also advises patients to be aware of insurance companies in the United States. Like we touched on at the start of this article, she says many are requiring people to switch from the brand name Remicade to a biosimilar of Infliximab.
“I’m making the switch over at my next infusion in July and my GI and I agreed that we felt confident on the data out of Europe about the efficacy of biosimilars. I recommend everyone with IBD to do their own research and have this conversation with your GI. Be proactive and prepared to discuss options when the time comes with your insurance company.”
Balancing the Logistics of Infusions and Work/Life
Megan Alloway has counted on Remicade to keep her Crohn’s under control for 21 years. She prefers to get her infusions on Friday so she can use the weekends to recoup because it makes her so exhausted.
“While Remicade has been a blessing to me for over two decades, it feels like every time I turn around, it’s time for another infusion.”
An OBGYN with Crohn’s who wished to remain anonymous, has been on Remicade since she was 18. She’s now 35 and still receives her infusions every six weeks. She credits Remicade for giving her a full quality of life and enabling her to stay out of the hospital.
“Since starting Remicade, I have been able to finish college, med school, and residency with my symptoms under control. I’ve stayed out the hospital ever since I started Remicade. My main complaint is how long the infusions take. Different infusion centers have different protocols and requirements, but usually mine take over two hours. It’s annoying to find that kind of time on a weekday and be able to take care of my own patients, but I have to do it for my health.”
Heather Richter agrees the time an infusion takes can be inconvenient, but she’s learned to make the most of the “me” time as an IBD mom with Crohn’s disease.
“I’ve learned to embrace the “alone” time. Be persistent at your infusions and if something seems off to you, speak up and make sure you feel like you’re being listened to. My infusion nurse gives me Benadryl and Tylenol beforehand, so if I have the kids taken care of, I find it helpful to nap and rest afterwards.”
Kristi Reppel has been taking on Crohn’s for 18 years. She received Remicade from December 2005 until August 2011. She switched biologics for a lifestyle change and started Cimzia in September 2016. She ended up back on Remicade in December 2016. She currently received 7.5 mg/k every 4 weeks instead of the typical 6-8 weeks.
“This biologic works for me. It gets me in remission and keeps me there. I am a lot less symptomatic, thanks to my medicine. The bad part of all this is my veins are scarring over because I only have a few good ones and those are almost gone. The post infusion exhaustion and headache can also be a lot. As an attorney, finding the time to sit through an infusion and schedule it around court room hearings can be rough. I cannot recommend enough about the importance of hydrating with water that has electrolytes like Smart Water around infusion day. It’s made a big difference for me!”
Linde Joy Parcels says Remicade allowed her to reach remission in high school. She had swollen and painful joints, and after starting the biologic, she experienced a complete transformation.
“Unfortunately, I metabolized Remicade too quickly and had to transition to Humira after one year. I loved getting to take a day off school while on Remicade and spent my infusions relaxing with my mom watching soap operas. That was the silver lining for me!”
The Caregiver Perspective—from a wife to moms of pediatric patients
Remicade has been a lifesaver for Rebecca Kaplan’s husband. Before starting a biologic, she says his Crohn’s was not well-controlled. He was on one medication, going to the bathroom 25-30 times a day. By the time her husband started Remicade, the damage had already been done and was irreversible, so they didn’t see the true impact of the biologic until after he had bowel resection surgery.
He’s been on Remicade for 11 years this summer and in that time, he’s been able to graduate with a master’s degree, work full time, work out, play softball, and attend family functions. He’s also put on close to 45 pounds and gone from malnourished and underweight to thriving.
“Remicade isn’t picture perfect – the few days after his infusion I like to say he becomes a toddler who can’t control their emotions. He’s extremely irritable and says it feels like his brain is on fire. He gets sinus infections more often than before (and apparently that’s not uncommon when you are on a biologic), and he still has some symptoms from time to time. But his last colonoscopy showed that he is in deep remission, and I know that he wouldn’t have achieved that without being on Remicade.”
Alexia Anastasia’s 11-year-old daughter started Remicade in February. The list of side effects and hearing a horror story from a friend who “had a friend who had a stroke” made her a nervous wreck. Ultimately, she looked at the research and the long history of pediatric use of Remicade and felt she was making the right decision alongside her daughter’s GI.
“It’s been a game changer. We learned quickly my daughter needs it every 4 weeks after trying to go for 6 weeks. I’m so grateful it seems to be working. Her fecal calprotectin is almost normal from originally being 3,460. Her inflammatory markers are back to normal. I just hope it keeps working and the side effects remain minimal. It’s been a challenging 5 months with this new diagnosis. Now that I can reflect, I’m grateful my daughter’s GI pushed for us to start a biologic immediately. My daughter was withering away before my eyes and now she is back on track.”
Beth Otto-Stapleton’s daughter Penny started on Remicade when she was diagnosed with Crohn’s disease in January 2017 at age four. She was given two infusions a few days apart while hospitalized during her first flare. Unfortunately, that is when Penny suffered heart damage and was diagnosed with heart failure because of the Remicade.
“She now does Vedolizumab infusions instead because it is a different class of biologic. We are thankful as a pediatric patient, Penny can go to a Children’s Hospital for treatments…it keeps the hard parts of the disease there and keeps our home a safe/comfy space. The great part about the infusions is that we also get blood work done and get instant feedback. I always ask the infusion nurse to give her an extra bag of fluids so she’s well hydrated.”
Dermatological Side Effects
While talking with patients about their Remicade experience, skin issues came up in a few conversations.
Remicade was the first biologic Dana Drengler tried. She says it worked the best and the longest for her. She was in full remission and lived a normal life while on it. Unfortunately, after about 3 years in, she started to develop red spots on her lower legs. They looked like broken blood vessels at first, but then started to spread and get larger, eventually turning into deep and painful ulcers.
“The ulcers covered my lower legs and became super painful, to the point where I couldn’t walk some days. It stumped my doctors, and they only thing they could think of was that it was a reaction to Remicade. They had me stop taking it and within a few months, my legs started to heal. I still have scars 5 years later!”
Mia Frakes has been using Remicade to control her Crohn’s inflammation since 2017, overall, she feels the medication does the trick, but she has what she calls the “oddest side effect”.
“I’ve been dealing with extremely red, dry, and flaky skin in strange areas like behind my ears and my belly button. My GI says she has seen this dry skin in other patients, too. I have to go to the dermatologist, and they give me topical medication to put on the dry areas, which seems to help.”
Madelynn Jessberger was diagnosed with Crohn’s in 2008, she’s been on Remicade the last three years. She was receiving infusions prior to getting her colon removed and was put back on the biologic after. Aside from some aches and tiredness after infusions, she also developed a rash.
“I developed psoriasis all over my body and my GI is unsure if it’s a side effect, a separate autoimmune disease, or an extra intestinal manifestation of Crohn’s. I manage the rash with thick creams and topical medicine from my dermatologist. Everyone is different, this is just my experience.”
Pregnancy + Motherhood and Remicade
Alyssa Leggett started Remicade in August 2018. At first, she was getting infusions every 8 weeks. Then, in 2019, two weeks before an infusion she started feeling fatigued and was dealing with urgency, pain, and diarrhea. Because of those symptoms, her infusions were moved to every 6 weeks.
“After I gave birth, my doctor wanted to switch me to the rapid rate infusion. I’ve been doing those since November 2020. They’re about an hour shorter and I don’t have any side effects from them. I feel like I can have a more stable life. I still get symptoms from time to time, but I attribute that to the food I eat. Thanks to Remicade, I reached remission and had a healthy, full-term pregnancy.”
Allie Heiman is grateful for how Remicade has helped prepare her body for motherhood.
“I haven’t had any side effects from Remicade and have found the infusion to be easiest in my hand with only minor bruising the next day or two. I started in March 2020 and was cleared to start trying for pregnancy in December 2020. After 13 years of negative scope results and being told I was not healthy enough for pregnancy, I could not be more thrilled with the outcome. I am hopeful to be a mom in the future, and grateful that Remicade made that a possibility with Crohn’s.”
Tayler Jansen is an IBD mom of two. “Remicade has been amazing! Remicade and Imuran have kept me in remission for the past 9 years and enabled me to have two healthy pregnancies.”
Shakila Almirantearena has identical 5-year-old twin girls. She was diagnosed with Crohn’s shortly after they were born and is currently in remission. Along with Remicade, she takes Methotrexate.
“I take Tylenol and Claritin at the infusion center to prevent any rash, etc. I usually take the whole day off work and really allow my body to rest. I haven’t had any major side effects. I’m usually tired the next few days and sometimes get a headache the day after my infusion, but Tylenol helps alleviate any pain.”
Christine Renee has had Crohn’s for 20 years, she’s a mom of two teens and a teacher.
“Remicade was a game changer for me compared to the previous meds I was on. I eventually developed antibodies to it, and it wasn’t as effective. My tips for those getting started are to not be afraid. I was so nervous about starting a biologic, but after the way I was feeling and the tests that my doctor performed, I knew it was the right thing to do. I started Stelara a few days ago and I’m hoping for similar results.”
Hydrate well the day before, day of, and day after.
Remember your headphones or AirPods so you can drown out the noise and watch a movie or show. Noise canceling headphones for the win!
Pack games and books to pass the time or your laptop so you can work.
Have someone else drive you when possible, in case you are drowsy from the Benadryl.
Pack snacks and drinks. Many infusion centers will also have this available for you.
Have a sweater or blanket!
Lauren Hopkins has been on Remicade well over a decade and receives what’s considered a “double dose” every 5 weeks. She’s found her sweet spot and has been able to maintain remission. She says, “Refrigerated Remicade mixed with room temperature saline feels COLD pumping into your veins. It shouldn’t hurt, so if it does, say something to your nurse so they can fix your IV.”
Have the Infusion Nurse run saline before and after your infusion to help with headaches.
Be your own best advocate. Speak up to your care team if something feels off, if your symptoms are persisting, or if you’re dealing with side effects that make your life challenging.
Remember if a biologic fails—it’s not on you, you didn’t fail anything, the drug failed you.
Flare ups during pregnancy and after, starting a biologic while breastfeeding, and wondering whether one baby is enough—all experiences and concerns that have weighed heavily on 30-year-old Addy Irvine of Minneapolis. Addy was diagnosed with ulcerative colitis in May 2015. Addy’s son, William, is now 13 months old. This week—she shares a guest post about her journey to bring him into this world and the challenges and victories she’s experienced as a new mom with IBD. I’ll let her take it away.
Children were always a part of my plan. My husband and I knew we wanted to have children and were ready to start trying after I completed my Master’s degree. While my colitis had not been officially determined to be in remission, I was on Asacol and had not experienced symptoms for some time when my IUD was removed. After 8 months of “letting the universe decide” when to have a baby, we found out I was pregnant! Yay!
My first trimester was filled with the usual discomforts. Second trimester, you know, the one where you’re supposed to enjoy pregnancy and start feeling better? Not for me. I went through the worst flare of my life. It was easily the most miserable I’ve ever been, both physically and mentally. I had to stay home from work multiple days a week and was unable to help at home. I don’t know how I could have made it through without my husband’s support.
My doctors put me on oral Uceris, and when that wasn’t enough, they also put me on the rectal foam. The Uceris made things bearable, but I knew I wasn’t doing well.
I wasn’t gaining any weight despite my ever-growing belly. My friends and colleagues started noticing that I was losing weight. At first, it was in the chipper way people comment on weight loss. After a while people started to ask about it in a concerned voice.
I’d tell myself, “At least my baby is doing okay!”
By 3rd trimester, I could function normally most of the time. At my 36-week growth ultrasound, it was determined that my son had intrauterine growth restriction, and they talked to me about the possibility of induction between 37 and 39 weeks of gestation. After my second-high blood pressure reading that week, a nurse advised me to come into labor and delivery. When I arrived, I was diagnosed with gestational hypertension and started the induction process the next morning at 37 weeks.
Five days of induction later (really), my beautiful baby boy, William, arrived at 5 pounds 1.5 ounces. He was small, but healthy! After he was born, my UC got so much better until he was 2 months old when I had another flare. Suddenly I needed to care for my newborn in addition to taking care of myself. It seemed an insurmountable task. With frequent bathroom trips and intense fatigue, the newborn phase was made even tougher.
Holding on to the hope of breastfeeding
Breastfeeding was something I was really hoping for as part of my journey into motherhood. When William was born, I was thrilled, and so fortunate, to have a successful early breastfeeding relationship with him. When I started flaring again, breastfeeding became a significant challenge. I’d be with William during a late-night feeding, get a few minutes in, then have to wake my husband to keep William safe while I quickly ran to the bathroom. Obviously, this made William more than a little upset to start eating only to be pulled away. I also became increasingly worried that he wasn’t getting the nutrition he needed from me because I wasn’t absorbing nutrients the way I needed to. I upped my supplements and kept close tabs on his weight but continued breastfeeding. At this point, I knew I needed to do something different with my medications. What I was doing clearly wasn’t working.
I started to research biologics and met with my doctor to discuss my options. He recommended Entyvio, and my insurance approved it. I worried William would be harmed by breastfeeding while I was on a biologic. Would he be more susceptible to illness because of it? Would my supply be affected? My doctors reassured me that it was safe to be on Entyvio and continue breastfeeding, but I knew the research is limited. After seeking information and support from other moms who have breastfed on biologics, I decided to take the risk, start the biologic, and continue breastfeeding.
“Healthy mom, healthy baby” is the way I decided to frame it.
From flaring to remission
After 3 infusions, I started to feel significantly better, and I am now in clinical remission for the first time since being diagnosed. I finished my breastfeeding journey about a month ago. My supply wasn’t affected by starting the biologic, and my son has had absolutely no ill effects. He gets sick less than I do! Most importantly, I can engage with and care for him so much better than I could while I was ill.
This journey has made me think twice about having more children. Pregnancy and childbirth were really, hard on my body because of my UC and other complications I experienced after delivery and I’m not sure I want to risk my health again. Sometimes I wish that I were like “normal” people who approach pregnancy without having to think about all of this. I remind myself that this is MY normal, and that’s okay. And it’s okay to have one child if we decide to do that. I keep repeating this: healthy mom, healthy child(ren).
Reflecting on my journey, here are some lessons learned that I hope you take away:
Work closely with your GI doc and your Maternal Fetal Medicine team to make a plan BEFORE trying to have a baby (or even “letting the universe decide!)
Prioritize your own health, even when pregnant. Remember: healthy mom, healthy baby. This includes taking care of your mental health.
Connect to other moms who have CD or UC to learn from them
Flaring during pregnancy and postpartum is physically and mentally exhausting – lean on your support system heavily if you find yourself in that place
If breastfeeding is important to you, talk to your doctor about whether it’s safe to continue to do so while on a biologic – utilize the IBD Parenthood Project as a helpful resource.