Ustekinumab and Joint Pain: What Users Say

• Sic...
• Taken for 1 to 2 years
• December 15, 2019

Ustekinumab for Crohn's Disease "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!"

• Lob...
• Taken for 6 months to 1 year
• May 31, 2020

Ustekinumab for Crohn's Disease "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."

• ree...
• May 24, 2014

Ustekinumab for Psoriasis "Psoriasis cleared completely after the first injection. Now, 6 weeks after my second one, it's starting to come back on my head. I'm also experiencing difficulties deep breathing while exercising and when I exert myself, also elbow and knee pain. Being an active exercise person, this is dramatically affecting me now."

• CD ...
• September 3, 2013

Ustekinumab for Psoriasis "I am 50 years old and have suffered with severe psoriasis for 45 years. I've tried every treatment known to man and the best is Stelara. I was clear by the second injection and no side effects. I did take a study injection years ago and it worked but made every joint and muscle in my body swell and hurt. Needless to say, I stopped taking the medicine. I have been taking injections now for 10 years and my blood work is always perfect, so there doesn't seem to be any long-term effects."

• Kar...
• Taken for 6 months to 1 year
• April 19, 2021

Ustekinumab for Crohn's Disease "I was diagnosed 20 years ago and had a right hemicolectomy 15 years ago. Humira stopped working for me, so I was changed to Stelara 6 months ago. The first couple of doses caused intermittent headaches and I felt tired but kept on them. Started with urinary infections, bad constipation resulting in internal bleeding and hemorrhoids, really tired and depressed caused by the constant headaches and joint pain, so I'm giving up on them."

• Kat...
• Taken for 1 to 2 years
• July 12, 2024

Ustekinumab for Ulcerative Colitis "This is the best medication I've tried for UC after being on Remicade and Humira altogether for 3 years without much success. Stelara works great. I've been in remission for almost a year. It started working immediately after infusion, and then on my first injection, I felt so much better. My only complaint is that it gives me some joint pain for a few days, and then I'm back to normal again."

• Mat...
• Taken for 1 to 6 months
• March 4, 2020

Ustekinumab for Psoriasis "I got my first plaque psoriasis patch on my scalp in the year 2000. Slowly, it increased all over the scalp and then different parts of the body. I was controlling it by applying various steroid creams, lotions, and moisturizers, but slowly got immune to most of them and they were not giving any relief. My doctor prescribed a few different drugs one after another. All of them were giving me too much trouble due to adverse side effects. Finally, he prescribed me Stelara. I took the first two shots and I am going for the third tomorrow (5th March 20). All my scalp got cleared two weeks after the first injection, and most of the other plaques on other parts of the body are getting cleared now. At least there is no flaking from the spots. Though I still have some joint pains, especially during early morning."

• Ran...
• May 8, 2019

Ustekinumab for Psoriasis "18 yr old college student here! I was diagnosed with psoriasis a little over a year ago. I got my wisdom teeth out in March of 2018, and after 3 weeks, 85% of my body was covered in severe psoriasis. I used diet change, topical ointments and creams, phototherapy, cyclosporine, Humira, and Stelara. I built up autoantibodies to Humira, so I had to switch medications, and who was the lucky winner??! You guessed it. STELARA! I have been experiencing joint pain recently, but my skin is 99% clear now after taking my first dose of Stelara this January. I took my third dose 3 days ago, and my life has completely changed. I can actually focus on my studies while feeling healthy and happy in my own skin. Thank you, Stelara. You are giving me the chance to live out my college years to their fullest. I gave it a 9/10 rating because it was a NIGHTMARE trying to get my Stelara ordered to the package center at my college dorms."

• Old...
• Taken for 1 to 6 months
• November 4, 2019

Ustekinumab for Psoriatic Arthritis "I have taken 4 doses (injections) of 45 mg: #1 to start, #2 at 30 days, #3 at 12 weeks, #4 12 weeks later. Dose #3 wore off completely at 10 weeks with all symptoms: fatigue, joint pain, aching, and skin itching. Will work with doctor to shorten the length of time between doses if possible. It did clear my skin by 90% during this time period."

• Cil...
• Taken for 6 months to 1 year
• March 11, 2021

For Ulcerative Colitis "I was diagnosed with UC in 2014. Since then, I was put on Humira and other medication. It did not help, and Stelara was the last option for me before surgery. I did get my induction dose on the 25th of March 2020, and within the first 2 weeks after it, I immediately got better. I am on the 12-weekly dosage, and for the last year, my health has improved 100%. The only problem that I currently experience is severe joint pain, especially in my hands and feet. I am very excited to see the results of my colonoscopy that I am going to have on the 16th of March 2021."

• Anonymous
• Taken for 6 months to 1 year
• December 3, 2018

For Crohn's Disease "Only lasted for a few months, during this time, I developed joint disease that previously was not an existing issue when I was on infliximab. I have experienced frequent flares of diarrhea and joint pain while on this drug and have found it not very useful for maintenance (this is my experience, so I suppose it differs for everyone)."

• P...
• Taken for 1 to 6 months
• November 20, 2021

Ustekinumab for Psoriasis "I am a 60-year-old male. I began to acquire plaque psoriasis in 2005, beginning with my scalp and soon followed by my elbows, up to my lower forearms. For years, I tried every cream and potion available, and it did little or nothing to help with it or slow down the growth. I did get a bit of scalp relief for a few years from Taclonex Suspension, but it was removed from my insurance allowable drugs list last year. This, and the fact that it was now covering 20% of my buttocks, fingernails, and lower back prompted me to finally look at a biologic. Stelara has (within 7 weeks and two injections) totally removed psoriasis from my life except for one dime-sized spot on my backside. It almost seems too good to be true. The side effects have been some sinus issues within the first week of both injections and some minor joint pain within the first 48 hours of each injection. It has even taken the psoriasis out of the two fingernails that were affected. I only gave it a 9 because of price."

• Jet...
• Taken for 1 to 6 months
• June 2, 2021

Ustekinumab for Crohn's Disease "Stelara has controlled my UC very effectively, however, my mobility has been affected as I have aching joints and stiff muscles that are particularly bad after I’ve been sitting or driving."