Generic Name: Ustekinumab for Crohn's Disease (ustekinumab)
Stelara (ustekinumab) "I had Crohn's for 30 years. Been on loads of different treatments, had loads of hospital stays, but after the 4th injection, my stomach is now great!! No joint or muscle pain, more energy. I walk my dog for miles every day over the forest. It’s a miracle! So happy."
Stelara (ustekinumab) "I am going into my 8th week post my initial IV infusion on Stelara, and so far, so good. I recently got diagnosed with small bowel fistulizing Crohn's, and my GI doctor and I decided that Stelara would be the best treatment option for me before trying any other options. I experienced a decrease in abdominal cramping immediately after the initial treatment, but the other symptoms persisted. At the 6-week mark, all my Crohn's symptoms decreased significantly. My appetite is back, and I am putting on some weight, and I am having normal bowel movements. My chronic eye inflammation has also significantly decreased, which makes me suspect that it is indeed Crohn's related. I am only in the beginning stages of treatment, but the impressive results make me so hopeful, and honestly, has made me forget that I had Crohn's to begin with. No negative side effects so far, but I did notice it has taken me way longer to get over a cold, but nothing other than that. Praying that this continues to work for me!"
Stelara (ustekinumab) "Amazing drug that has put my Crohn's into remission! Humira, Remicade, Cimzia, Entyvio, 6mp, Lialda, all failed to work for any period of time. I have Fistulizing Crohn's and had 3 feet of resection 2 years ago. Two years on Stelara and I have my life back. I also changed my diet to the Mediterranean, avoiding simple sugars and eating only healthy food. Changing the gut microbiome along with finding the right medicine is key to controlling Crohn's. Much research now is pointing to the role of healthy gut microbiota. Stelara is so simple to inject with its tiny syringe! Lower risk of serious side effects than other medicines in its class! Amazing!"
Stelara (ustekinumab) "I have Crohn's Disease and tried three different medications and broke out with Psoriasis from head to toe. Lost my hair and the ability to walk faster than a snail because my feet swelled up. Since Stelara, I have lost over 60 lbs, Psoriasis completely cleared, hair growing back. I exercise at least 3-4 times a week and feel wonderful. I think Stelara helped my digestive system and now everything is working. Biggest problem with Stelara is, now I have to get a new wardrobe."
Stelara (ustekinumab) "I'm a Crohn's survivor for 44 years. I tried all the old meds and some new ones. Remicade worked best for 3 years and 6-MP for 4 years. Humira worked for 9 years, but all symptoms returned. Stelara was my golden hope. The first 8 months... nothing! Now, one year after the initial IV infusion... much better results... almost too good. Constipation is my norm. Painful gas constantly, bloating, exhaustion, and a simple head cold took forever to leave. Not sure I will continue this. Body aches and joint pain are much worse. My main issues are constipation and exhaustion. I'd rather have diarrhea and a bit more energy. Very disappointed! Good luck, Crohnies!"
Stelara (ustekinumab) "I was diagnosed with Crohn's Disease in 1995, although I have been fighting with a bad stomach much longer. I have had 4 feet of my intestines removed through 4 different resections (usually 1 every 5 years). I have been on Cimzia, Humira, steroids, and Lialda. I started Stelara in the summer of 2017. It stopped me from throwing up almost every time I ate. I still get cramping, but not nearly as painful as I did before. I am putting on some weight, thanks to some help. I remain hopeful that Stelara will continue to help me fight this crappy disease. I hope it helps all who take it until a cure can be found. Love."
Stelara (ustekinumab) "I am 55 and was officially diagnosed with Crohn’s about 10 years ago after many tests and misdiagnoses. I am convinced I’ve had it for probably 20 years. I tried Humira, Entyvio, and Stelara. The first two caused significant joint pain and brought no improvement to my Crohn’s. I started Stelara 10 months ago and am now in remission for the first time since my diagnosis. No significant side effects other than some fatigue the day of and day after the injection. Very happy with this medication. Easy to use and only once every 8 weeks. Good luck to all those searching for their own ‘right’ medication. Stick with it and don’t lose hope!"
Stelara (ustekinumab) "Stelara's been great for me. I'm 64, have had Crohn's for 50 years and undiagnosed for 20 years until my mid-30s. I'm now in the best shape I've been in decades - no cramping pain for 3 years since starting injections. Been biking 30 miles a week, playing flag football and basketball, working with weights and a trainer 3x weekly. No side effects - yay!"
Stelara (ustekinumab) "I've been on Stelara for a year now. I've seen relief of symptoms, but the meds do not stay in my body. We are now dosing every 4 weeks starting this month. I’m concerned about the long-term effects of taking this medicine. Over these past 6 years, I have been on 5 different biologics, and none have helped me so far."
Stelara (ustekinumab) "After 41 years of Crohn's disease and being non-responsive to all treatments, including biologics, I've been on Stelara now for 16 weeks, and I'm starting to see a real difference! I was reluctant to believe that it would work, but I'm ecstatic that something may actually turn things around for me. Best yet, NO side effects!"
Stelara (ustekinumab) "I was diagnosed with Ulcerative Colitis in 2006, but did not start biologics until 2017-2018. Started with Humira and found that I was a nonresponder. For the rest of 2018 and into 2019, I tried other meds and battled with my insurance on which medicine is covered based on their formulas. During those times, I was not responding to anything, developed fistulas, and was found to have my UC progress to Crohn’s (or I may have had Crohn’s all along). I started taking Stelara and I feel great. My symptoms have improved to where I don’t think about them. I have my life back. I do take longer to get over respiratory infections and do have some joint pain, but I did also before Stelara, so nothing new there. The one side effect I noticed is ringing in the ears sometimes. Stelara has changed my life."
Stelara (ustekinumab) "Stelara was effective in the sense that it quickly healed my colon that had Crohn's disease. I would be thrilled, except that after a few doses, I developed horrible anxiety, depression, tinnitus, and headaches. I have been on other biologics without these issues. I did not feel like myself anymore, so I chose to stop it because the negative outweighed the positive. Everyone responds differently."
Stelara (ustekinumab) "Four weeks after my initial loading dose, my Crohn's is already much better, however, the fatigue is almost too much to bear. Despite having Crohn's disease, I can usually get through the day and be productive. But on this drug, I don't want to get out of bed."
Stelara (ustekinumab) "I am worse on Stelara than I have ever been. I'm on it for Crohn's. Been hospitalized more now than before!!! I have had something going on in my stomach since I was 10 years old. I've been embarrassed, ashamed, frustrated, and exhausted. I am 55 years old. I have had 2 surgeries, which I am blessed because I know there are many that have many more. A million colonoscopies. So many perceptions. All I want is some normalcy in my life. I've used three doses so far... Done with it!!!"
Stelara (ustekinumab) "Stelara has worked fantastically for me, where Humira was a failure. I found that the biweekly Humira shots were not enough to control symptoms, but the initial 8-week infusion of Stelara has been great."
Stelara (ustekinumab) "Just started stelara, I can tell I'm very tired and it gives me a little tummy pain and sore throat. I'm bloated but always have been on and off. Harder stools at times constipated. I've had 3 bowel rejections and now have 2 fistulas I'm praying I can get rid of my second 1 being on stelera. I'm still having a few flare ups with fistulas but hope I will work yet just started. I'm going to ear nose and throat doctor tomorrow I've had ear pain inner ear and headaches and not sure if any is related to stelara it started at same time and hurts more a bit now but just had an injection 2.5 weeks ago. I'll keep everyone posted! HAS anyone noticed eating issues or headaches sore throat and coughing up a little phlegm?"
Stelara (ustekinumab) "I have Crohn's. Was diagnosed in 2010. I tried pills and after a while, it didn't work. Then I tried Humira and that failed after 2 years. I then ended up hospitalized 3 separate times for my Crohn's within a 3-month period and was septic all 3 times due to extreme complications from Crohn's. After 3 weeks of hospital stays and a new GI, I was prescribed Stelara. I can't stress enough how this medication changed my life. I've been on it since February 2020 and I haven't had a flare-up, pain, or major issues. 5 stars for me! I highly recommend this medication."
Stelara (ustekinumab) "I have recently had my second bowel resection for Crohn's and today have started my first infusion of Stelara. No other drug has helped unfortunately. Chronic constipation, bloating and an inability to digest or process food has left me not really eating at all for the past 2 years. I am hopefully this drug will give me a quality of life again but am also aware the side effects may become an issue. The depression side of things may be interesting as I am bipolar...hopefully I'm covered there..Good luck to us all on our journey."
Stelara (ustekinumab) "Been on Stelara injections for 12 months. I didn't detect any problems until 5 months ago when I started losing my balance, got a virus in my mIddle ear and headaches and nausea. Doctor suspects it is connected to Stelara - has anyone else experienced these symptoms. Anyone else experienced this??"
Stelara (ustekinumab) "I've been on Stelara for Crohn's for over 10 weeks with poor results. I am losing the remission created by remicade. Stelera caused me exhaustion and I have stomach aches, sensitivity and bowel struggles."
Stelara (ustekinumab) "I am on week 2 of the initial Stelara IV infusion. So far, no side effects! (As I had with Humira, Cimzia, and Remicade.) I have noticed that I am able to tolerate milk a bit more than I was able to prior. Not as much gas or abdominal cramping. Looking forward and hoping the medicine will help me achieve remission!"
Stelara (ustekinumab) "Stelara put my severe Crohn’s disease into remission and it has stayed that way for the past 6 months. The shots don’t hurt very bad and it’s only 1 every 8 weeks for me! Side effects I’ve noticed: headaches, fatigue, groggy day after shot."
Stelara (ustekinumab) "Stelera fixed my stomach pretty much straight away. I was going to the loo for up to 20 times a day for nearly four years! At first, everything was great. I’ve been on it for a year now and the side effects are awful. I have horrific fatigue, headaches, brain fog, hair thinning, pale skin, and aged terribly ( I’m only 32 ). I haven’t stopped taking the medication yet but it’s made me feel so fragile. Just wish I could feel normal!"
Stelara (ustekinumab) "I was diagnosed 20 years ago and had a right hemi colectomy 15 years ago, Humira stopped working for me so I was changed to Stelara 6 months ago. First couple of doses intermittent headaches and felt tired but kept on them. Started with water infections, bad constipation resulting in internal bleeding and haemorrhoids, really tired and depressed caused by the constant headaches and joint pain so I'm giving up with them,"
"Wow. I have tried every medication: 6MP, methotrexate, Humira, infliximab, vedolizumab, etc., all failed in the end, and my latest try, vedolizumab, didn't work at all. I was in a flare for 8 months, my consultant said the only option left was to remove my colon. I have never been in so much pain and weight loss. Then I got a call from the hospital saying the drug company was willing to offer me ustekinumab. It's not licensed in the UK yet for Crohn's, so I wasn't sure. But OMG, within 9 days of treatment, I've never felt so good. I must admit in those 9 days when I never felt anything, I thought it wasn't going to work, then boom! I woke up one day and felt amazing. If you get offered this amazing drug, just give it time and it will work wonders."
Stelara, Wezlana, Pyzchiva, Selarsdi
Stelara
