After Remicade (infliximab) and Humira (adalimumab) failed me — along with sulfasalazine, mesalamine, and budesonide — I started the biologic Entyvio (vedolizumab) last June as my main Crohn’s disease management medication. I still didn’t enter clinical remission, so I began Stelara (ustekinumab) on Feb. 5.
As I mentioned in a previous column, “Crohn’s Disease Medications: Part Four in a Series,” the treatment plan my doctors used is like a pyramid. Therapies that have the least number of side effects, or are least harmful, are at the bottom of the pyramid, so we start with them.
Some use the same pyramid, but inverted, starting with the aggressive, potentially more harmful medications first. While these treatments may induce remission, other less dangerous medications may work for some patients, too. Discuss options with your care team.
These options can include steroids like prednisone and budesonide, immunosuppressive medications like methotrexate and azathioprine, anti-inflammatory medications like sulfasalazine and mesalamine, and biologics like Humira and Remicade. I have tried everything except methotrexate in my journey to remission, so far.
According to the Stelara website, “Stelara is the only FDA-approved medicine that targets [proteins] IL-12 and IL-23, which are thought to be associated with gastrointestinal inflammation in Crohn’s disease.”
With only one infusion as a loading dose followed by skin injections every eight weeks, it’s possible to only have around six treatments a year, even at home! With Stelara, an initial infusion is needed for a loading dose.
My infusion usually takes a few hours, for preparations, getting hooked up to the machine, starting the IV and saline drip, waiting for the Stelara mixture from the pharmacy (dosing based on my weight), and then an hour for the medication’s administration. I bring headphones, a blanket, and a stuffed rectum plush from I Heart Guts with me, along with more items I shared in “Entyvio Infusions for Crohn’s Disease and How to Prepare.”
After this sole infusion, Stelara will be given to me by injections. I’ve done the Humira shots and prepared for fertility shots, so I feel comfortable giving them to myself — I plan to do it every eight weeks.
Like any medication, Stelara comes with the risk of infections because of a weakened immune system, liver problems become a complication worry, and serious allergic reactions are always a concern.
Your doctors may suggest a different treatment plan from what I have tried. I cannot, and would not, offer medical advice. I can only share what I know from my personal experiences. Remember, Crohn’s disease is different for each patient, and what works for me may not necessarily work for you.
Crohn’s disease and ulcerative colitis have no cure, and complications from them can worsen over time without remission.
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Good luck with your treatment! I am on it every four weeks with Home injections and in addition every four weeks I get an Entyvio infusion.
That’s the Stelera worked wonderfully but was just not enough support. If I could get more medication with each dose I’m certain I’d be in remission at this point. Fingers crossed FDA approves that soon!
Wow, I didn’t know you could have both Entyvio and Stelara? That’s interesting to know. Thank you for that info! Good luck to you!
Good luck with Stelera. I had my 6th bowel resection at the end of September 2017, had the Stelera infusion in December, recently gave myself the first injection of Stelera, and so far, no side effects. I’m hoping I don’t experience any. I like that there’s only 1 infusion (loading dose) and subsequent shots every 8 weeks, that I can give to myself at home. I’ve tried EVERY other medication with mixed results. As you correctly stated, Crohn’s is different for each patient and what works for one of us, may not work for another. We are warriors !!
Good luck to you, too! I hope the Stelara helps us both! You are a warrior, too! You got this!
I as well have tried them all!!! I am currently on Entyvio every 4 weeks and have been on it for 3 years. It has not put me in remission and things were getting bad so I tried Stelera last spring. I got really depressed and not right mentally within 24 hours of the shot. I have never experienced anything like that in my life. It lasted a good 6 weeks and I never touched the Stelera again. Have any of you experience that side effect while on Stelera. I went back on Entyvio and still am barely treading water but better than nothing at this point.
I just started Stelara so no known side effects or troubles yet, but also no changes. I wish you luck, this Crohn’s business is not easy.
Praying for a cure within our lifetime! Kudos to all Crohn’s and Colitis warriors. My daughter was diagnosed when she was 7 years old. She has been on almost every medicine. She bravely decided to have her colon removed almost a year ago – after eleven years of suffering. She is now on Stelara injection every 8 weeks, and she is doing really well! Don’t ever give up!
Good luck for sure!
I am a 64 year old male, and was diagnosed with U.C. and liver disease in 1996! Only thing that helped was prednisone, which ten tears I began blowing out tendons, shoulder both went! I got so sick in 2006 that I elected for colon removal in hope of a cure! Had J-pouch surgery that took 3 surgeries! That caused 5 hernia repairs down the road! $ years ago I tried Entyvio which never helped much and now on Stellera! From every eight weeks it soon turned into every four! Stellera has helped better than everything else but now having ED and joint pain has never improved since early years but worse at 64! People have no clue the life of suffering we endure and there is no end! I can not remember what a life without pain would be like!
I was taking Cimzia was happy with it. Moved to an area where the only Chron’s specialist was 6 hours away round trip. He didnt know Cimiza, so put me on Humaria. first several months fine but came crashing down. Had to carry “the backpack” (change of clothes, wipes, TP ect). changed Dr. back on Cimiza. Has anyone else tried this and the 2 medications mentioned here are they a higher teir? i never heard of them. Part of me is thinking to go to Europe where stem cell is high % remittion. possible it could come here 2024 if FDA aproves it.