The Patient Experience: What the IBD Community Say About Stelara

Starting on a biologic and finding one that helps manage your IBD can be challenging physically, mentally, and emotionally. Nearly 13 years ago (July 14, 2008) I sat in my GI’s office like a fish out of water petrified of injecting myself with four Humira shots. I remember how daunting and overwhelming taking the plunge into life on a biologic was and know I would have given anything to hear firsthand experiences from fellow IBD patients. This inspired me to launch a special series on Lights, Camera, Crohn’s hearing firsthand accounts from people like you and me, living life on biologics. So far, I’ve covered Remicade and Entyvio.

This week—we tackle Stelara (ustekinumab). Stelara is categorized as a human interleukin-12 and -23 antagonist. Patients receive a one-hour loading dose infusion and follow up with an injection every 8 weeks. As you’ll read, some patients receive their injection every 6 weeks, others every 4. Stelara is indicated for Crohn’s disease, ulcerative colitis, severe plaque psoriasis, and active psoriatic arthritis. As a biologic, it joined the IBD game in September 2016 for Crohn’s disease and October 2019 for Ulcerative Colitis.

“I’ve been on Stelara for almost 5 years. I started taking it right when the FDA approved it for Crohn’s disease. I have only good things to say, because it’s keeping me in remission. It’s easy to administer and doesn’t burn like Humira used to (prior to the Citrate-free formula). I stayed on Stelara throughout both my pregnancies. My GI had me skip my last dose both times I was pregnant, and I re-started my injections once the babies were here,” said Ashley Miller.

Patient Advocate and Co-Founder of IBD Desis, Tina Aswani Omprakash, joined a clinical trial for Stelara to treat her Crohn’s disease. She says it took months to work, but it was the first time in a decade of having IBD and enduring more than 20 surgeries that she was able to achieve remission.

“At that juncture, I thought my life would always be in shambles and that I would never be able to rise from the ashes of this disease. But here I am today pursuing advocacy work and going to graduate school part-time. Modern medicine is nothing short of a miracle and I can’t help but count my blessings every single day to have been given another chance at life again. Thank you, Stelara, for making me whole again.”

Click here to learn more about Tina’s clinical trial experience with Stelara.

Making the Switch

Lauren Gregory is an IBD mom and a pediatric hospitalist. Even as a physician herself, she was nervous about switching biologics. Prior to starting on Stelara, she took Humira injections for 8 years. Unfortunately, the Humira induced numerous medication related side effects that really affected her quality of life.

“I was worried that Stelara wouldn’t work and that I would feel even worse. Switching medications ended up being the best decision. I have been in remission since starting Stelara four years ago and feel better than I have since diagnosis. Stelara also allowed me to have a healthy pregnancy and baby!”

Jenna Ferrara recently made the switch from Remicade to Stelara. Last week, she did her first self-injection and says Janssen was beyond helpful throughout the process. Click here to learn about the Nurse Navigator Program. The program provides a registered nurse (in-person) to help support you as you learn to give yourself injections. 

“Between the nurse navigator and sending a training nurse to my house, they made it so easy. I was nervous before my first shot, but thanks to the nurse, it was great!! I’m still waiting to see results, but things have been slowly getting better after only two doses.”

“I tried Stelara after Humira failed me and it never helped or worked from the start, but regardless it was sold to me as the best option. My attending at the time even said it was his top choice for patients and would have put me on it from the start if he had been my GI who diagnosed me. I was super disappointed it failed, but now I’m on Remicade and feeling better than ever,” said Julie Mueller.

Erin O’Keefe was diagnosed with ulcerative colitis in 2017 and initially was able to control her IBD with mesalamine. She started Humira in January 2020 and had what was believed to be a drug-related reaction that landed her in the hospital for 2 weeks and the ICU for 3 days.

“After I was discharged, I was started on Stelara, and I couldn’t be happier with the results. My symptoms are minimal, and I have even been able to re-introduce foods that I tended to stay away from. The injection is easy and I’m so happy not to be taking pills daily. Fingers crossed I can stay on Stelara for many years to come!”

“My 15-year-old son started Stelara last fall after a Humira fail (he was on Humira for 4 months when he developed psoriasis). It seems to be working as his markers and symptoms have slowly subsided. He has also put on some much-needed weight. Therefore, his doctors have recommended that he step up to the adult dose. Their aim to fully eradicate the inflammation—his calprotectin is still elevated. While Stelara is approved for pediatric use for psoriasis, it’s not yet approved for Crohn’s…so there have not been any studies.”-Michelle Boas

Hayley Weiss had to switch to Stelara after Humira caused her to get Psoriasis on the bottom on her feet and the palms of her hands. She just celebrated two years of being on Stelara. The 8-week dosing wasn’t doing enough to keep her IBD under control, so she was switched to every 6 weeks.

“I was doing well for awhile on the 6-week injections, but then at about 5 weeks I was getting symptomatic, so my doctor decided to actually give me another loading dose and I kept on with the 6 weeks for a little while until September of last year. At that time, my doctor approved me for every 4 weeks and that is what I have been doing.”

“I switched to Stelara from Humira in February 2019. I feel the best I’ve ever felt in a long time. A lot less breakthrough flares, energy levels are back, and inflammation numbers are lower than when I was on Humira. I haven’t had any negative reactions and have zero complaints!”- Erin Forman Carmiel

Martin R. was on Humira for about a decade. During that time, he calls the drug a “game changer” for bringing stability to his life when it came to managing his Crohn’s disease and reducing the need for steroids and antibiotics.

“After the regular blood tests for the azathioprine which I’ve been taking since 1992, I showed I had developed antibodies to Humira. I chose Stelara two years ago and it seems to have taken over where Humira left off. I don’t have additional side effects and a longer interval between injections, so that’s a bonus.”

After two years of remission, special education teacher, Jasmine Edwards, started flaring, despite being on Entyvio. Previously, Humira and Remicade gave her drug-induced lupus. Now, after just receiving her first dose of Stelara, she’s hoping the fourth biologic is a charm.

“I’m looking forward to the freedom of not having to get monthly infusions at the doctor’s office. I really hope Stelara puts me in LASTING remission so I can get back to a better quality of life. I’ve been feeling well since my loading dose infusion, but I’m also on prednisone. The only side effect I had after the infusion was feeling tired. In four weeks, I will administer my first at-home injection. I’m nervous about giving myself a shot because with Humira I used the pen, but I’m READY for remission, so I’ll try anything!”

Amanda Hart has had two doses of Stelara so far. Unfortunately, her MRI still shows new inflammation.

“I’ve been increased to once every 4 weeks. If there is no improvement in three months with the higher dosage, I’ll be looking for a new approach. I was originally on Humira, but switched due to my symptoms. Sadly, the symptoms on Stelara have been worse and my diet is more restricted then when Humira was not considered effective anymore.”

Alli Butler was previously on Humira, she finds Stelara makes her feel similarly.

“I’m currently taking Stelara, it has worked great for me and got me through my third pregnancy. Hoping it continues to work well through my postpartum experience.”

Tips for Self-Injecting Stelara

Lori Plung has battled Crohn’s disease for more than 40 years. Since that time, she’s been on four different biologics. She credits Stelara as her easiest patient experience.

“Remicade and Entyvio are obviously infusions—they took time and planning to organize appointments at infusion centers and waiting there while being infused. I was on Humira which was nice to have the freedom to inject at home, but I didn’t like the pen model of injecting. I haven’t had any problems with Stelara. I started my loading dose infusion in April 2019 and give myself the injection every 8 weeks. I love that it’s a pre-filled syringe and that I can do the injection in my home.”

Lori found this helpful tutorial on YouTube that offered great tips for injecting Stelara.

Claire Paschall recommends taking the injection out of the fridge so it can warmup to minimize the burn.

“The automatic needle pullback jolts if you take your thumb off once done and it can hurt (so slowly take your thumb off). I feel like it took longer to build up in my system than Remicade and Humira, however I haven’t had any side effects to report. I have been flaring with my rectal disease, but my small intestine disease is in remission.”

Plea for a Pen-Style Injection

Courtney Meyer started Stelara in March and immediately saw improvement with her symptoms. Previously, she had tried Remicade, Humira, and Entyvio.

“It’s so nice not to have to get an IV after the loading dose. The only downside is that it doesn’t come in a pen option like Humira, and I have difficulty with needles, so I get it administered by a nurse in my GI office every 8 weeks. They inject it in the back of my arm, so I don’t have to deal with the usual stomach or thigh injection sites. It’s the most convenient and easiest treatment of Crohn’s that I’ve been on in 15 years! I was able to stop other medications and I’m just on Stelara. No side effects so far.”

Julianne Bossert was diagnosed with Crohn’s more than 25 years ago. She was on Humira for almost 5 years and says it worked great, until it didn’t. She started Stelara in February and is gearing up for her fourth dose next week.

“I feel like I’m on the cusp of getting better, but not quite there yet. I’m about two weeks out of being off steroids that I have been on for a year. So, my crutch is now gone, and we will really begin to see if Stelara is working. My two biggest complaints are the shot itself. It’s not a pen like Humira, which was way easier to administer. The syringe is way scarier, and they show you how to inject it once and then off you go! Awful anxiety. The other complaint is how different the relief is. When I was due for my Humira about two to three days leading up to I was in bad shape…very sick. But I’d get the injection and feel better within an hour. Leading up to Stelara, I feel awful, get the shot, and still feel awful for days. The turnaround time isn’t as quick for me.”

Emily Beaman is an IBD mom of two who initially started on Humira and was switched to Stelara two years ago.

“I will say the only thing I don’t like is the injection. I prefer the Humira pen-style. I have yet to be able to give myself the injection which means I have to rely on my husband to do it. I find it hurts more than the original Humira did for me (the Citrate-free version wasn’t available while I was on it) I really wish they would come out with a pen-style injection. I worry about if I ever had to give it to myself…that I wouldn’t be able to.”

Stelara Tips for the IBDMom (or Dad!)

Brooke Abbott is a patient advocate, single mom, and co-founder of IBD Moms. She shares helpful tips for administering the injection whether at home or at your doctor’s office.

If injecting at home:

  • Keep an injecting kit. Have a small kit prepped with alcohol wipes, band-aids, and cotton balls or pads.
  • Prep the night before. Hydrate as much as possible and make sure you have your kit ready and prepped.
  • Injection day. Make it a relaxing event. Have your injection before a family movie night so you can get some cuddles in after injecting yourself or being injected.
  • Normalize your treatment. “Practice” with your little ones with a play doctor’s kit. I used to always play doctor and do fake injections, to normalize living like a patient for my little one.

If injecting at the doctor’s office:

  • Book Appointments to include self-care time. I try to book appointments for my injections early in the day so I can have time after to do something for me. Whether it’s going to grab a coffee and read, meet with a friend, or have a nice lunch.
  • Take the LO (little one) with you. I am all about including my LO in my patient life. I want him to be able to ask questions and voice concerns. So sometimes when he is out of school, I will take him with me. It’s good for him to hear the progression of the treatment and to see mommy being brave and getting an injection.
  • Multitask. Try and take all your blood tests and everything at one time. That way you don’t have to make any unnecessary trips to the doctor’s office.

Let’s Talk Side Effects

Overall, the consensus from patients was little to no side effects—which is a HUGE win. Of course, each person’s experience with IBD and with biologics is unique.

Stelara is the first biologic for Shanna Quinn. She started on it in July 2020 following bowel resection surgery. She found starting off with an infusion was a bit “scary” and much preferred giving herself a shot which she says is “so easy.” In her opinion, making the decision to start a biologic was the biggest hurdle, rather than choosing one.

“It doesn’t hurt, although you do have to go slow or else the medication will sting a bit. One drawback is that I get tired afterwards. I’ve learned to take the day and relax and sleep, if needed. I do my shots on the weekend to allow for that. My GI and I discussed a few options before choosing Stelara. I took a test that asked questions about priorities, risks, concerns, etc. The results gave me details about how each biologic stacked up against your concerns and priorities. Take the “IBD&Me” test for yourself here. Knowing you may need to be on a medication for life or knowing it may fail you is hard to wrap your brain around. I hope IBD will get way more targeted and specific regarding treatment options.”

Lyes Mauni Jalali has found the side effects of Stelara to be more draining than Remicade, but not as bad as Entyvio. He says the first three days after the injection he needs considerable rest.

“I have also noticed systemic night sweats as far out as five weeks after the injection. For me, this is unique to Stelara in terms of my individual experience. The silver lining is that Stelara seems to have generated more stability and normalcy from an IBD symptom perspective. My level of disease is quite severe and to date, Stelara has had the best outcome. One drawback however is that insurance companies are less willing to grant physicians discretion to prescribe more frequent injections. My GI has said he faces greater pushback on Stelara specifically.”

Paula Hepburn has been on Stelara for 1.5 years, it’s the only biologic she’s been on thus far. She feels like it’s working well to control her Crohn’s disease.

“The first infusion gave me crazy fatigue for four days and I often get tired after each injection. Sometimes it only lasts a few hours, sometimes into the next day. I feel fortunate to have access to this medication because it helps control my IBD so well.”

Madison Morgan has been on Stelara for 2 years. She started it following an ileocecal resection that involved the removal of 8 inches of intestine. Madison finds the injections to be easy. She does experience some side effects though.

“I get a headache immediately after the injection that lasts about 15 minutes, the worst side effect I’ve had is yeast infections and UTI’s, I’ve never had them until Stelara and have had 6-7 yeast infections in the last two years and 2 UTI’s. A couple weeks before my Stelara injection (once every 8 weeks, 95 mg), my arthritis from my Crohn’s gets pretty bad, but seems to get better after my injection.”

“Stelara has been amazing! Aside from the infusion loading dose, it’s quick and easy and fairly pain free. I have minimal side effects other than sometimes feeling sleepy after my injection, but other times I have crazy energy. Overall, this is the only biologic that has worked for me for more than a couple of years.”-Bethany Lowe

“I’ve found the injections to be almost painless and I’m a huge wimp with shots. It took a few tries to find the right timing and frequency for my shots, but I do them every 4 weeks and approximately 1-3 days before each shot, I start to get some IBD symptoms…so I know it’s working!”-Danielle Fries

Olivia Lippens was diagnosed with ulcerative colitis 20 years ago. She’s an IBD mom of 3. Lucky for her, she was able to get through the first 18 years of living with IBD without being on a biologic. Unfortunately, she experienced a postpartum flare two years ago that is still wreaking havoc on her life.

“I started Stelara about a year ago. It’s super easy to use. The only side effects I’ve felt are being tired for a day or two after the injection. I feel quite lucky that I was able to start Stelara, rather than other options. It’s easy to take because you do it at home, and the side effects are non-existent for me. Unfortunately, it hasn’t been as effective as we had hoped. I do my injection every 4 weeks instead of 8. From a tolerance and side effect standpoint, Stelara has been a good medication for me, but it still frightens me to be on a biologic. I know everybody manages this dance in their own way.”

Krista Cherrix has been on Stelara for one year. She prefers the syringe injection over the Humira pen but has unfortunately dealt with weight issues since starting it.

“I have gained a TON of weight on it and can’t seem to get it to budge even with diet and exercise. I also have not been able to get pregnant so far, which isn’t necessarily the drug, but I got pregnant with my first (pre-diagnosis) without trying.”

“I took Stelara monthly for nearly 2 years and had no side effects. My diarrhea was still frequent and after having an MRI and a colonoscopy, the results showed that I still have significant inflammation in my small bowel. I am going to be starting Humira in hopes of healing the inflammation.”-Marsha Gagnon

Dealing with Insurance and Cost

Shawn Bethea is an IBD patient advocate and author of “My Tummy Really Hurts”. Overall, she considers her experience on Stelara to be good, but wants others to know there have been some hurdles to cross along the way.

At first, I truly didn’t think the medication would work for me. I was placed on the standard dosing and scheduled to receive my injection every 8 weeks. During the initial weeks I’d feel great! I had more energy and didn’t feel the sharp pains as I usually did (in my stomach area). I wasn’t going to the bathroom as often and even my Eczema seemed to be clearing up.”

However, after those first initial weeks, she noticed a decline. Her energy decreased, her Eczema became bothersome, and her joints would ache. She communicated her concerns with her GI who prescribed injections every four weeks.

“With any high dollar medication comes unique challenges to those of us who don’t live on a Beyonce budget. Between my insurance, the patient assistance program, and copay, the drug was running about $20,000 monthly. When you have insurance and nothing changes like a lapse of coverage or a job change, this is something you can possibly juggle (depending on the level of coverage/assistance, but mine was pretty good). The problem came in when I changed jobs, lost insurance, and had to wait for new insurance to take effect – which was delayed, of course.”

Shawn stopped taking Stelara, due to lack of insurance coverage, everything was impacted. She began to experience joint pain, became extremely tired, and was using the bathroom more—even experiencing extreme constipation.

“Overall, I love Stelara, but I hate the way our healthcare system operates. No drug should run half of someone’s salary monthly. But I subscribe to the system because I simply want to live and be healthy like everyone else.”

Jacquie Persson has been on Stelara since 2019. She started off with the recommended dosage of injecting every 8 weeks, but after 6 months, she was moved to every 4 weeks.

“Since starting Stelara, my Crohn’s disease has been well-managed I haven’t had to take prednisone since 2018, after depending on steroids on and off from 2016-2018. Financially, being on this drug is a little anxiety inducing. The list price is over $20,000 per injection and I’m constantly on edge wondering when or if my insurance will decide to stop covering it. My copay is over $200. I currently have copay assist which brings my out of pocket down to $5, but what if that program were to go away?”

“I started Stelara in December 2016 after Remicade failed me. I had success with small flares here and there. In March of 2021 I had a big flare—my first in about 5 years and was out of work for 2 months. My GI wanted to increase my Stelara from every 6 weeks to every 4, but my insurance repeatedly denied it and just finally approved it about a month ago, thankfully in time for me to be feeling better.” – Mary Fordham

“The dosing is wild! I started at 8 weeks and now I’m moving to six…and I know some people on every 4 weeks. Insurance has a really hard time approving more frequent injections.”-Catalina Berenblum

Click here to learn more about Janssen’s CarePath Savings Program for Stelara.

Success Stories on Stelara

“Stelara has been a Godsend for me. I had an ileocolic resection nearly five years ago and have maintained remission with Stelara and azathioprine since my surgery. The side effects have been minimal. For me, it’s been one of the easier injections I’ve used. It doesn’t sting or burn like Humira did prior to the release of the Citrate-free version. I take Stelara every four weeks instead of the typical eight.”-Jennifer Ryan Carmichael

Amanda Pennwell was diagnosed with Crohn’s when she was 8 years old. She’s now a mom of 3 and due with her fourth baby this October. She’s been on almost every drug approved for Crohn’s disease. She says she can honestly say Stelara has changed the severity of her Crohn’s the most significantly, with the least amount of side effects and the biggest improvement to her day-to-day life. She started Stelara in April 2019 after flaring with her twins. She was able to get pregnant, have a smooth postpartum experience and breastfeed her third baby while on it.

“Stelara helped me get my life back. This is something I never dreamed my broken body would ever be capable of doing. I’m so thankful that Stelara is continuing to work for me. I have been healthier than ever. I work out all the time and my body feels strong. I haven’t experienced abdominal pain more than a dozen times in the past two years. It’s truly remarkable. Stelara has enabled my husband and I to chase our dreams while raising our babies! I work part-time while staying home with the kids. We our building our dream home and I know I couldn’t keep up with it all if I felt the way I did two years ago. I’m thankful for research and better IBD drugs like Stelara.”

Patient Advocate, Founder & President of Patient Authentic, Lilly Stairs, credits Stelara for saving her life.

“I have been in medically controlled remission for nearly 8 years from all three of my autoimmune diseases – Crohn’s Disease, Psoriatic Arthritis, & Psoriasis. I went from bleeding ulcers in my small intestine and total body arthritis that left me paralyzed in pain to living symptom free and thriving as a solopreneur. I am so grateful for this brilliant medical innovation and only hope that someday all autoimmune patients can have this type of experience on a medication.”

Check out previous biologics that have been featured on Lights, Camera, Crohn’s. These articles have NO affiliation or guidance from pharma. All content was created thanks to countless IBD patients sharing their personal patient journeys with the hope of helping others.

The Patient Experience: What the IBD Community Says about Remicade

The Patient Experience: What the IBD Community Says About Entyvio

Coming up next: Humira (adalimumab)

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