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

• Barbara
• Taken for less than 1 month
• September 20, 2021

"I just started Stelara to treat Crohns. 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 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."

• Joe
• Taken for 6 months to 1 year
• November 24, 2020

"Stelara was a 1 star for the first 24 weeks. The waiting period was ridiculous. I just did my third at home injection so today puts my 32 weeks in I did not see any results until about 24 weeks on the medication. Stelara works for crohn's you just have to give it time to work. Now we are starting to work on the dosing schedule to prevent flare ups around dosage time."

• Karin
• 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 severe active flare, you will not be able to control your disease. I'm switching to anti-tnf."

• JuneBug
• 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 day of treatment and for weeks after, diarrhea is greatly increased. No other effects. Would be a great medication for those with chronic constipation!"

• 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 suppose to get prefilled needles, to too much paper work 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 & after $4400.00 and 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"

• Turtle
• 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."

• DawnL
• 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 life saver 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 90mg every 8 weeks. When asked directly, my GI danced around that question but changed my dosing to 90mg 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."

• Robin
• 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 stop 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 flair 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 down fall! Medication was not active the last 2 to 3 weeks before 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 $34000.00 They keep fighting me and I'm loosing weight too fast. Why does medication have too coast this much!"

• Phmokda
• 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 Stelera. 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."

• 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...."

• 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."

• CDano
• 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."

• Marlon
• 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 Crohns disease but increased my sugar levels, tryglicerides, ESR and CPR to the roof. I had to stop it!"

• Lynn
• 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. 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 Crohns is so much better I am hoping that I will adjust better with each shot."

• Kflix
• 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'm have been on it 8 weekly for a year now but have found its giving me more side effects after having it. This is my last treatment available but I sometime wonder if it does more bad than good and how long it will be effective for"

• Keela
• 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 seen 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 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 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."

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

"I was diagnosed Crohns in February of 2022 @ 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 testi-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."

• Gary...
• 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."

• Jane
• Taken for 1 to 2 years
• March 29, 2018

"Have been on Stelera one year and it has worked great. No more Crohns symptoms. Humira did nothing for me"

• kate
• Taken for less than 1 month
• May 23, 2019

"I'm 2 weeks post IV of Stelara. They told me it might make me tied 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."

• Elisa
• Taken for 6 months to 1 year
• October 13, 2019

"Stelara put my Crohn's into remission within a couple doses. However, I developed horrible depression and had to stop. No other side effects."

• Ollie
• Taken for 1 to 6 months
• July 29, 2019

"I have had one injection of stelara and after 8 weeks no improvement as yet"

• Peter
• Taken for less than 1 month
• August 5, 2020

"I got my first infusion of stelara a month ago. I’m starting to notice a slight difference in how I feel. No side effects yet. I will post another update in a few months."