Stelara for Crohn's Disease User Reviews (Page 2)

• Jun...
• Taken for 1 to 2 years
• February 1, 2022

"I've had Crohn's for 30 years. Tried Remicade, Humira, now Stelara. The only thing it's doing is worsening my diarrhea. Not helping the Crohn's, but the day of treatment and for weeks after, diarrhea is greatly increased. No other effects. Would be a great medication for those with chronic constipation!"

• Bar...
• Taken for less than 1 month
• September 20, 2021

"I just started Stelara to treat Crohn's. It's been a rough year with 4 hospitalizations and constant illness related to the disease. I'm so hopeful that Stelara will allow me to stay off the oral steroids. The steroids are super effective but of course, horrible side effects. I've gained so much weight I don't recognize myself. I've only been on Stelara a week, so it's too soon to tell, but I do notice I'm sleeping a lot more than usual and I've been noticing a slight soreness in my throat. As I've been reading the reviews, I noticed a lot of people mention depression, which is concerning as I struggle with depression anyway. I'm hopeful Stelara may be the drug that finally works for me. Good luck to everyone in your healing journey."

• Kar...
• Taken for 1 to 6 months
• October 9, 2020

"No side effects (only fatigue), but not working very well to control Crohn's flare-up. Don't use this if you have a severe active flare, you will not be able to control your disease. I'm switching to anti-TNF."

• Daw...
• Taken for 2 to 5 years
• January 11, 2022

"I started with Humira when my disease was so horrible. I was in the hospital every month for two years, and it never worked. I’ve had 5 surgeries since 2016, and Stelara was a lifesaver for me. I started Stelara in the beginning of 2019, and I am still not in remission, getting close, but it definitely makes me feel better, and I have no side effects. No bleeding, which was a serious problem for me. Maybe tired, but I am always tired! Stelara and my awesome GI doctor have saved my life."

• Anonymous
• Taken for 6 months to 1 year
• March 13, 2022

"It took about 3 weeks after the initial IV loading dose to notice any symptom improvement, but my symptoms dramatically improved after the 3-week mark. I felt unstoppable between 3 and 8 weeks after the initial IV infusion. My stools went back to normal, abdominal pain was down, and my energy was WAY up. I had not felt this good in many years. Unfortunately, things started to fall apart after going to the subcutaneous self-injections. My symptoms gradually started coming back and flaring up in the weeks prior to my injection due date. It seems to me that Stelara is underdosed in some patients with the current FDA recommendation of 90 mg every 8 weeks. When asked directly, my GI danced around that question but changed my dosing to 90 mg every 4 weeks after a blood test revealed my drug levels were low. I wish Stelara was offered as an IV infusion because the subcutaneous injections just haven't worked as well. On a positive note, I don't have any side effects to report."

• Mel...
• Taken for 1 to 2 years
• November 4, 2023

"Stelara stopped a rip-roaring flare within a few days after receiving the first loading dose. My Crohn's symptoms are non-existent 90% of the time. I forget that I even have Crohn's sometimes! I'd call that a win. The only side effects I've had are fatigue and weakness for a few days after a shot. I have not had more illnesses due to having a lowered immune system. I have moderate Crohn's disease and have not had any surgeries."

• 124...
• Taken for 2 to 5 years
• May 4, 2024

"I started taking Stelara 4 years ago. My first loading dose, I believe I went into an anaphylactic shock. My face turned red, and I felt dizzy, like my throat was closing. Something felt very wrong. I got a big dose of Benadryl through IV, and it stopped anything else from happening. My doc said I'm the 1% of people that this happens to. I continued the dose at a slower pace, and I was fine to finish. I now take the injection every 8 weeks. The injection site gets red and hot, but nothing major, I don't think. Good things are that I am in full remission, and Stelara has actually made my Crohn's better than it was originally. Curious if anyone else has had allergic reactions?"

• dha...
• Taken for 2 to 5 years
• January 20, 2025

"I have been taking Stelara for a number of years and am completely satisfied. I have both ulcerative colitis and plaque psoriasis. Both have been fully controlled by Stelara. I tried Entyvio and Remicade and other drugs without success. I am concerned now because my new insurer has questioned whether it will cover my prescription."

• Phm...
• Taken for 2 to 5 years
• December 3, 2022

"I was diagnosed with Crohn’s in 2016. After two episodes of bowel obstruction, I was started on Stelara. In the next 5 years, I had 3 more admissions to the hospital and ultimately a stricture dilation retrograde via a colonoscopy in September 2021, then surgery (strictureplasty) in January 2022. I have been fine since then, but my inflammation blood markers have never been normal, my pathology showed inflammation, and last summer an MRI still shows inflammation. If this is called a success, I shudder to think what a failure looks like."

• Rob...
• Taken for 6 months to 1 year
• July 19, 2022

"I love this drug! It is the 4th one I have had to be on. I used Entyvio for 7 years, and it was fantastic till it stopped working at all. I then tried Humira, and that did not work, I had a reaction. I then tried Remicade, and that did not work! I had been in a Crohn's flare for 8 months and was ready to just die. I was then placed on Stelara, and the magic worked after about 6 months. I was doing my own injections at home, which was great! I receive the injection every 58 days, and that's the downfall! Medication was not active the last 2 to 3 weeks before the next dose. I have been fighting my insurance for the past 1.5 years to receive it every 4 weeks, not 8 weeks. Due to the cost of $34,000.00, they keep fighting me, and I'm losing weight too fast. Why does medication have to cost this much?"

• Tur...
• Taken for 1 to 6 months
• January 1, 2024

"I started Stelara and it has worked well to control my Crohn's. I was on MP3 for several years, but it was affecting my blood counts and I had more joint pain, so they switched me to Stelara. I have gained weight and my bowel movements and digestion are great. I had my infusion and 2 self-injections up to this point. I had joint pain (arthritis secondary to Crohn's) prior to taking. Doctors thought it may help with the joint pain, but it has been ineffective :(. Waiting for blood work for the amount of Stelara in my system to see what to do next. The joint pain has been a hurdle that has affected my day-to-day activities! Hoping that it can be resolved soon because it is unbearable at times."

• CDa...
• Taken for 1 to 2 years
• November 30, 2021

"Because Humira (and other TNF inhibitors) carries the risk of causing demyelinating diseases such as MS, and I'm already at increased risk of developing MS, I started Stelara without trying Humira first. I've now been on Stelara for a year (taken every 8 weeks) and it's largely been great for me. I had a lot of typical symptoms and complications from my Crohn's, including inflammation of my J pouch, blood in my stool, abscesses in the perineal area (leading to hospitalization), large, painful anal skin tags, and frequent, seemingly random fevers. All of these have almost completely cleared up since I started Stelara. I feel much better. I have had some side effects; I had occasional constipation for the first few months (has since cleared up) and frequently feel very low-level sick (slight sore throat, runny/stuffy nose), the latter presumably because of the immunosuppressive effect of the medication. Overall, though, Stelara has been worth it for me."

• bye...
• Taken for 2 to 5 years
• November 17, 2023

"Easy to administer and works like a charm. High number of squamous lesions cause monthly biopsies. I have Medicare Rx insurance and unfortunately, I am no longer able to afford extraordinarily high co-pay and do not qualify for assistance. Very sad that I can no longer receive this miracle treatment...."

• Lyn...
• Taken for 1 to 6 months
• September 7, 2022

"I have had the infusion and now two shots of Stelara, and after each shot, I have about a week of side effects such as headache, dizziness, and nausea. The biggest concern is the dizziness, which affects my daily life. It slowly goes away, and a few weeks later, the dizziness comes back for a few days, but my pain and other issues from Crohn's are so much better. I am hoping that I will adjust better with each shot."

• Kfl...
• Taken for 2 to 5 years
• July 20, 2021

"I have been on Stelara for nearly 2 years, initially, it was 12 weeks, and it helped, but I found a month or so after it would wear off. I've been on it 8 weekly for a year now, but I have found it's giving me more side effects after having it. This is my last treatment available, but I sometimes wonder if it does more bad than good and how long it will be effective for."

• Mar...
• Taken for 1 to 6 months
• October 16, 2021

"This medication works, but the price is too high. Did completely remove my whole psoriasis and helped me a lot with Crohn's disease, but increased my sugar levels, triglycerides, ESR, and CRP to the roof. I had to stop it!"

• Anonymous
• December 21, 2022

"All I can tell you is Stelera is the worst company, from sending medication late to sending needles you have to fill yourself when you are supposed to get prefilled needles, to too much paperwork to fill out. Also, if you get approved for medication to be paid for, the problem comes when you find out it goes on your Medicare total, and after $4,400.00, you'll end up paying for the medication that you were not paying for before. Check this out because no one will call you from Stelera to explain this to you. If there is another medication you can use, I would go with that medication."

• Kee...
• Taken for 1 to 6 months
• March 1, 2022

"Was on Stelara in 2018 for 5 months because my GI told me I couldn't stay on Pentasa forever. I luckily have mild symptoms of Crohn's when on nothing or Pentasa, but then when I switched to Stelara, I thought it'd make my stools nicer and just help with remission (because although I don't feel like I have Crohn's, my colonoscopies and first hospitalization prove me that I do). On Stelara, I experience a lot of fatigue/low energy, feeling like I had more symptoms than usual/cramps/nausea, looser stools than when on Pentasa. So I got off of it, never went back to get injections, and went back on Pentasa, but those pills are way too big, so I stopped taking them, and I started feeling worse. But I never actually saw my results/bloodwork/stool check while on Stelara, and I decided to give it another shot and see how well it's actually working on me. I'm again super tired, crampy, bloated, gassy, can't get over a cold. Hoping to see if it's all worth it at my next bloodwork and colonoscopy!"

• Kev...
• Taken for 6 months to 1 year
• November 15, 2022

"Was diagnosed with Crohn's in Feb. 2022 at age 35 after months of illness and waiting on scopes (due to COVID delays). Felt pretty helpless for about 6 months on the drug before I slowly started feeling better. I had read that it can take 'up to 6 weeks' or something to see results, but it was much longer for me (6-7 months before I felt like leaving the house). I felt weak for months after starting Stelara, but it slowly faded, and I'm almost back to 100%. I experienced some tinnitus, runny nose, cold extremities, and a couple of migraines early on that have not been an issue in the most recent months. I'm also taking Adderall for ADHD, Lexapro for anxiety/depression, and testosterone for low T from T-cancer a few years ago."

• Kyl...
• Taken for 6 months to 1 year
• August 9, 2022

"I was diagnosed with Crohn's in February of 2022 at 35 (I'm 36 now). Symptoms began around 2018. I've taken the initial IV and 3 injections, all 8 weeks apart. About 4-6 weeks after the IV is when I first began to notice improvement. My fatigue and weakness have been the only 2 symptoms that I've yet to have improve. My last 2 labs have shown a low white blood cell count and a 'bottom of normal' range B12. I'm a testicular cancer survivor recently, so I'm still getting regular blood work done. So fatigue could be coming from the low B, and we are testing for leukemias. I've gone 3 weeks without vomiting, which is a 10-month record for me. Stelara has helped a lot with the pain, fevers, bloating, rectal bleeding, etc. But I haven't quite gotten back enough to be confident out of the house."

• Gar...
• January 19, 2024

"I have been on Stelara for Crohn's for 6 years. It has done a great job for Crohn's, but now I have major skin problems on my hand and really bad on my face, neck, and eyelids. I had the same problem with Remicade on my hand and legs."

• Dav...
• Taken for 1 to 2 years
• December 10, 2024

"Until I went on Stelara, I had to plan my days and know where all the washrooms were along any routes I took away from home. About a month after starting the drug, I began to have much better days. I stopped having to plan trips or carry emergency supplies in my car. The drug has been life-changing. I am two years into treatment, and I feel like I am symptom-free. I take the drug at home every 30 days. Because of the preloaded syringes, I can handle all my own administration."

• Tin...
• Taken for 5 to 10 years
• March 26, 2025

"I have had Crohn's since the year 2000 and have had two major surgeries to remove parts of my colon. I have used so many different medications before starting with three biologics before starting Stelara, which I have been on for a while now with no side effects. I do my injection once a month, 90 mg. I am also in deep remission since October 2023."

• Jan...
• Taken for 1 to 2 years
• March 29, 2018

"Have been on Stelara one year and it has worked great. No more Crohn's symptoms. Humira did nothing for me."

• kat...
• Taken for less than 1 month
• May 23, 2019

"I'm 2 weeks post IV of Stelara. They told me it might make me tired, and the first week I was exhausted beyond belief. The 2nd week, I'm not as tired and having more and more normal bowel movements."