Ustekinumab and Fatigue: What Users Say

• JMS...
• Taken for 6 months to 1 year
• November 18, 2020

Ustekinumab for Crohn's Disease "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!"

• Ste...
• Taken for 1 to 6 months
• June 1, 2020

Ustekinumab for Crohn's Disease "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."

• Han...
• Taken for 1 to 2 years
• May 17, 2023

Ustekinumab for Crohn's Disease "Stelara 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!"

• Rac...
• Taken for 6 months to 1 year
• June 26, 2020

Ustekinumab for Crohn's Disease "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 badly, and it’s only 1 every 8 weeks for me! Side effects I’ve noticed: headaches, fatigue, groggy day after shot."

• Mar...
• August 18, 2014

Ustekinumab for Psoriasis "Stelara is an excellent medication. I first contracted psoriasis through strep throat. I was covered in red spots from the neck down. Previously, I used a medication that cleared it up, but it was harsh and made my hair fall out! I switched to Stelara, and it cleared it up within days, I kid you not. The only side effect has been fatigue and maybe a mild case of depression (which I'm not sure can be attributed to the Stelara). I'm only giving it a 9 because it won't clear up the patches on my face, and it is very expensive (right now the cost is 19,000, but Johnson & Johnson is covering it). Highly recommend though."

• PJ ...
• February 7, 2010

Ustekinumab for Psoriasis "Stelara completely cleared 90% BSA, including severe palmar-plantar pustular psoriasis within 52 days of initiating treatment. Side effects included extreme fatigue lasting approximately 72 hours after each application. Feeling 'sunburned' was noted for several days after initial fatigue."

• mds...
• November 5, 2014

Ustekinumab for Psoriasis "Have been on Stelara for about a year and a half. When started, I had 50-60% coverage. It was down to about 10-15% by the time I had my second injection, and down to about 5% by the time I had my third. It has remained about that level since, but now only consists of flat pinkish spots that barely itch at all and look more like old scars than the scabby, cracked, bleeding mess they were before. As for the side effects, I seem to be more prone to various infections than before. I seem to catch colds more easily. Also, I usually feel some muscle pain and fatigue starting the day after my injection and lasting for a couple of days (easily dealt with by scheduling my appointments on Friday afternoons and taking it easy over the weekend)."

• AMA...
• Taken for 2 to 5 years
• September 2, 2013

Ustekinumab for Psoriasis "I have suffered from severe plaque psoriasis for ten years. I have taken every biologic medicine that is available, and Stelara has been by far the BEST. It has totally changed my life the past two years, and the GOOD news is my dermatologist said it is not one of the medicines that eventually stops working like the others. If it clears you and you are healthy with no major side effects, it's possible to live a psoriasis-free life for years! The side effects of many biologics were harsh, especially Remicade, but the last two years on Stelara, I have only noticed a bit of fatigue and only one upper respiratory infection."

• pat...
• July 1, 2015

Ustekinumab for Psoriasis "I'm 38. I've been on Stelara for 6 years, and I was 80% covered. Within 6 months, I was 95% clear. The only drawback is it doesn't work on my scalp, and my fatigue over the years has gotten worse. Some days I don't even want to move."

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

Ustekinumab for Crohn's Disease "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."

• 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."

• Mar...
• Taken for 1 to 6 months
• January 13, 2021

For Ulcerative Colitis "I have been suffering with UC since 2007. It took a good while before anyone could diagnose me. It’s been a long, scary, and tiresome road, tried nearly all oral meds, nothing worked. Been on/off steroids prednisolone, which have had major joint side effects now. Started biological Humira but wasn’t responsive. Finally onto Stelara. After the first injection within a few weeks, I felt a positive difference. Now onto my 5th injection, just a few days ago, however, not feeling too good. Loose stool, diarrhea, tiredness, and fatigue slowly creeping back. Trying to stay positive as everyone responds differently. Good luck, everyone, stay safe."

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

Ustekinumab for Crohn's Disease "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!"

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

Ustekinumab for Crohn's Disease "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!"

• ECG...
• Taken for 2 to 5 years
• May 5, 2018

Ustekinumab for Psoriasis "I have used Stelara since 2015, and I have 100 percent clearing! As an actor, I am very concerned about the breakout or even before they happen, but Stelara has been very effective in controlling the plaques, and I am still amazed at its efficacy on me. I have been trying to take longer intervals between shots. I had a dose the 3rd week in Dec '17 and the next one in April 2018, and this has been the longest interval I have taken. What I have observed within a week (and goes away) after injecting myself with a dose, I feel slightly fatigued, but it doesn't stop me from going to the gym, working out, or mountain biking that week. I'm just thankful that my insurance covers the cost of this expensive drug, but it's worth every drop. I was diagnosed with moderate psoriasis before using Stelara and have used PUVA, creams, shampoos, salicylic acid. PUVA was horrible, as that psoralen would give me a nauseous feeling like a freight train just hit me, but the booth gave me a great tan."

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

Ustekinumab for Crohn's Disease "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."

• Tea...
• Taken for 2 to 5 years
• January 3, 2025

For Ulcerative Colitis "I have been on Stelara for nearly 4 years now, and it has really been a lifesaver. Stelara is the first and only biologic I’ve ever taken for UC. I began to notice improvements in my symptoms within a month. About 9 months into taking it, I was in full remission with full mucosal healing. Since taking it, I’ve only had 2 very minor flares that were easily treated with topicals. As for side effects, I have a mild lingering cough that started around the time I started Stelara, and I stopped menstruating for a little over a year immediately after starting it as well. The injection itself is not painful. I notice a bit more fatigue in the 24 hours following injection. I would suggest getting your Stelara levels checked once you’ve been on it for a bit to make sure you’re within the clinical threshold. The traditional 8-week dosing schedule wasn’t keeping my levels high enough, so I take it every 5 weeks."

• Meg...
• May 12, 2017

Ustekinumab for Psoriatic Arthritis "Does not work for me. Much worse after three shots. Extreme fatigue."