Secukinumab and Pain: What Users Say

• Mid...
• December 15, 2020

Secukinumab for Psoriatic Arthritis "Was on methotrexate for ten years. Did well but thought it was causing some IBS-type symptoms. Derm PA put me on Humira. Did nothing and flared really bad waiting the six months before insurance would let me switch. Next was Cosentyx. Skin 100% clear in three weeks BUT---hives up and down my arms, back-to-back UTIs -five of them. I felt a little groggy and like I was wading through chest-high water all the time. THEN--major bloody diarrhea. Major. By the time I had a colonoscopy, I was a mess. Six weeks of nonstop bloody diarrhea. Diagnosed with Cosentyx-induced Ulcerative Colitis. Four months on prednisone trying to clear it up. Hoping it is not permanent. Gastroenterologist said he sees it from Cosentyx a lot. Now I have gained another fifteen pounds from the prednisone and back to being in terrible pain. Scalp starting to flare again. Cosentyx was NOT my miracle drug."

• Izz...
• Taken for 1 to 6 months
• May 24, 2019

Secukinumab for Plaque Psoriasis "It's been five weeks since I started taking Cosentyx, and now I am completely clear of psoriasis, but I have now begun very, very, very bad aching bones/joints, very nauseous, my bones have hurt so bad that I'm having so much trouble sleeping. I've gone to the emergency room because of the pain. The ER said everything's fine, so I'm gonna continue taking Cosentyx for maybe 2 more months, but I'm very scared of what's going on with my body. If my body continues to feel like this, I will definitely quit."

• Ste...
• February 3, 2020

Secukinumab for Plaque Psoriasis "I took Cosentyx for severe psoriasis beginning in February 2019. I saw good results, with est. 80% plaque clear up in under 4 weeks. However, within the first 6 weeks, I developed new onset Crohn's disease. Nobody in my family has a history of IBS. I lost almost half my body weight, suffered severe pain, bleeding, and missed months of work. The doctor doing my colonoscopy couldn't even get a third of the way in without harming me. I'm not alone in this experience, there are other people who have had this experience. Novartis' website still claims that new onset Crohn's or IBS is not possible. I am now on Remicade, supported by a high weekly dose of methotrexate, just to avoid having a flare-up. I have not had a flare-up since stopping Cosentyx. The risk of severe, violent Crohn's is not worth using this drug."

• Hub...
• Taken for 1 to 6 months
• June 6, 2019

Secukinumab for Psoriatic Arthritis "I've had psoriatic arthritis for over 55 years. Embrel was the new wonder drug, that is, until I started to suffer with scrotal abscesses. I stopped Embrel and hoped my body would stay clear of psoriasis. No such luck. Psoriasis came back with a vengeance. I'm now trying Cosentyx. 1st injection 21-05-19, the skin is starting to clear, but, and here is the but, I've got a sore throat, I'm wheezy, ache all over and feel tired all the time."

• Ayo...
• November 29, 2016

Secukinumab for Ankylosing Spondylitis "Nightmare with this drug. Prescribed it for AS but also suffer from ulcer colitis. Not only did it flare up my colitis, but also left me with peripheral joint swelling and pain. My joint pain had previously been extremely well controlled with Humira and Simponi until they lost efficacy. Humira was by far the best medication I have been on."

• Jqa...
• Taken for 1 to 6 months
• June 14, 2019

Secukinumab for Ankylosing Spondylitis "I've never been so disappointed by the results of something in my life. Since switching to Cosentyx, my ankylosing spondylitis symptoms have worsened x 10. I have no movement in my neck, constantly taking painkillers and anti-inflammatory drugs besides taking Cosentyx itself. I haven't felt this much pain in my entire life, it should seriously be discontinued. All this drug is, is a false hope."

• HEN...
• Taken for less than 1 month
• September 23, 2018

Secukinumab for Psoriatic Arthritis "Getting ready for my third 300 mg dose. I get nausea all the time. I just don't feel right. I have IBS and have been under control for some time. It has flared up now. I know it's just been three weeks, but my fingers are no better and very painful. If this continues after finishing the recommended dosing of 4 weeks, I'm not going to continue. Not worth it if you have to deal with all the side effects and still have pain."

• Luc...
• Taken for 1 to 6 months
• January 8, 2020

Secukinumab for Plaque Psoriasis "This is my 3rd failed biologic. I am at week 12, and not only am I breaking out with new spots, but the itch is intense. The spots on my hands hurt really bad. I don't think I will be on Cosentyx much longer."

• WZa...
• Taken for less than 1 month
• June 15, 2019

Secukinumab for Plaque Psoriasis "I just need to tell people if you have mild psoriasis, live with it, because if you take strong medication, later you will end up with your whole body covered with psoriasis. During my 30 years with psoriasis, I had a very small spot on my leg, and because I wanted it to disappear, I followed all kinds of medication, and now I am 90% covered with P. Anyway, this is my advice to new patients with mild or little, when it is little, it does not hurt. I know it looks bad, but live with it. It is a monster, when you have too much of it, you will wish you didn't start. I used to be on Enbrel, but it failed after many years. Now I have had 5 weeks of Cosentyx. The first 3 weeks I had so many spots, maybe 60% of my body, because I stopped Enbrel. I had so much pain and so much skin on my floor. After the 4 weeks, I feel better, little pain, very little skin shedding, but all the spots are not cleared yet. I hope it will be cleared in the next month. I will let you know. I put 5 stars because I am still starting."

• Tin...
• Taken for 1 to 6 months
• February 5, 2018

Secukinumab for Ankylosing Spondylitis "Stated this drug for Ankylosing spondylitis as in October after other biologics stopped working on 150 mg monthly. Very lightheaded, fatigued joints, sore, tired all the time. I don't think this one has helped at all. I have a review with rheumatologist on 20th Feb (1st review since starting this biologic). I'm gonna tell him it is no better. I've had AS since 2001, so I know by now what works. I found Enbrel was the best one for me till it stopped working."

• Dan...
• Taken for less than 1 month
• July 31, 2021

Secukinumab for Non-Radiographic Axial Spondyloarthritis "I have psoriatic spondylitis that is now worsening over the last two years to PSA. Cosentyx was the first drug I started on. I found the injection hard to push in without it burning. The biggest things that hit me within a couple of days were bone-crushing fatigue that had me holding onto furniture and the wall and bedbound by day 4. I ran labs and it tanked my B12 by 400 points within a week. I also have hormone records at the time, and my testosterone and thyroid took a nosedive AFTER one dose of this injection. Then the headaches, vision issues, and pain, though not as severe as the fatigue, were worrisome. I decided to stop the drug at that point. Any drug that is hitting me in multiple spots and is keeping me from performing my responsibilities is NOT a drug I will continue to inject in myself."

• Mwa...
• Taken for 1 to 6 months
• January 5, 2018

Secukinumab for Ankylosing Spondylitis "Was on loading dose for 5 weeks. Then increased by 50 mg every two weeks, upped to 300 mg after 4 months. Loss of mobility, back, ankle, shoulder pain, lots of inflammation. I was thriving on Enbrel but had to come off it 6 months in, deteriorating, and now will have to go back to the drawing board."

• Mwa...
• Taken for 1 to 6 months
• January 5, 2018

Secukinumab for Ankylosing Spondylitis "Was on loading dose for 5 weeks. Then increased by 50 mg every two weeks, upped to 300 mg after 4 months. Loss of mobility, back, ankle, shoulder pain, lots of inflammation. I was thriving on Enbrel but had to come off it 6 months in, deteriorating, and now will have to go back to the drawing board."

• Anonymous
• Taken for less than 1 month
• August 13, 2021

Secukinumab for Psoriatic Arthritis "I was put on Cosentyx by my rheumatologist as a first-line biologic. I was very keen for this drug to be my miracle, but unfortunately, it was a nightmare. After the first injection, a day later, I had a rash begin on my bum and was very sore and inflamed. The pain then moved into my bowel, giving me bad lower bowel pain. My rheumatologist sent me for a colonoscopy looking for IBD. The colonoscopy came back clear, and I was told to proceed. The same thing happened on the next injection, the pain was so bad I didn’t sleep for days. I proceeded with the third injection after being told it would get better. It definitely did not, and I was living with no sleep, severe pain, and couldn’t go to the bathroom. I have stopped Cosentyx two months since my last injection and am on probiotics and medicine to calm my digestive system to heal, I am still very sore. No diarrhea or blood, but very painful. Please, if you get these symptoms, don’t proceed, stop, and try another biologic. I am now on Humira and have no problems."

• Anonymous
• Taken for less than 1 month
• August 13, 2021

Secukinumab for Psoriatic Arthritis "I was put on Cosentyx by my rheumatologist as a first-line biologic. I was very keen for this drug to be my miracle, but unfortunately, it was a nightmare. After the first injection, a day later, I had a rash begin on my bum and was very sore and inflamed. The pain then moved into my bowel, giving me bad lower bowel pain. My rheumatologist sent me for a colonoscopy looking for IBD. The colonoscopy came back clear, and I was told to proceed. The same thing happened on the next injection, the pain was so bad I didn’t sleep for days. I proceeded with the third injection after being told it would get better. It definitely did not, and I was living with no sleep, severe pain, and couldn’t go to the bathroom. I have stopped Cosentyx two months since my last injection and am on probiotics and medicine to calm my digestive system to heal, I am still very sore. No diarrhea or blood, but very painful. Please, if you get these symptoms, don’t proceed, stop, and try another biologic. I am now on Humira and have no problems."

• Fri...
• Taken for 1 to 6 months
• January 23, 2023

Secukinumab for Psoriatic Arthritis "Self-diagnosed PsA confirmed by a rheumatologist. Tried Etanercept, no change, methotrexate alone, not much difference. Then Cosentyx 150 mg, 4 + 1 loading dose, then monthly, and now I am on month 3. The worst pain ever experienced-both hands, all fingers, wrists, elbows, hips, knees, and neck, the pain went off charts. I cannot use my hands at all, enthesitis everywhere as of Dec 10. Here we are Jan 23, getting worse day by day. Also, weird gastro stuff. I either need more, an additional med, or none! This is terrible and so disappointing. Utter disability, cannot leave the house. My heart goes out to you all if in a similar situation."

• Mad...
• Taken for 1 to 2 years
• November 23, 2020

Secukinumab for Psoriatic Arthritis "If PsA is mainly in SI joints and back, Cosentyx may be effective. Diagnosed with PsA in 1997. Prior to that, pustular psoriasis on soles of feet and palms of hands. Prescribed Enbrel soon after first available, effective for 15 years, except for SI joints (still needed bilateral knee replacement, rotator cuff surgery, and two foot surgeries, not all PsA). Four years ago I experienced repeated venous ulcers and stopped Enbrel. After ulcers resolved, was put on Otezla - no help with PsA. Switched to Cosentyx, initially good and no side effects. However, after a year, began to experience serious joint swelling in my fingers. Cosentyx helped with the SI joints - those are mostly pain-free. But swollen fingers equal constant pain. Doctor is adding Arava - avoiding Methotrexate because of diminished kidney function. Effective January 2021, Cosentyx no longer covered by my insurance, too expensive: choices are Enbrel or Humira. Probably back to Enbrel and heightened concerns over infections."

• Tod...
• Taken for 2 to 5 years
• August 3, 2022

Secukinumab for Ankylosing Spondylitis "Oh boy, where to begin? Ok, so I was born with juvenile arthritis. Then, at the age of 19, doctors finally found out I had ankylosing spondylitis (AS). Been on Remicade since I was 8 years old, worked amazing until I turned 18. Started Enbrel, worked good for 4 years, then it stopped. Switched to Humira, stopped for 4 years, switched to now Cosentyx. 5 years in, I’m 31 now, on the 5th year, it hit me like a wrecking ball just out of the blue, it stopped working. I have been waking up feeling like a 90-year-old man with all the stiffness. Can’t sit for more than 10 minutes without feeling the painful stiffness. I love to work out, have my own gym and everything. Now I feel incredibly painful when I squat, bench, curl, do pull-ups, push-ups, and just lift in general. Even carrying the 40-pack of water is a challenge from all the pain. I wish I could understand why this happens all the time, seems like these drugs have a term limit to when it stops working."

• Ray...
• Taken for less than 1 month
• October 8, 2018

For Psoriatic Arthritis "Got psoriatic arthritis at 15 years old, and the flare-ups were brutal. I'm able and 22 years old now, and been bedbound for 8 months. Psoriasis 100% body and all joints affected. The drugs didn't work, so I'm currently on cyclosporine 100 mg twice daily, methotrexate 25 mg, and Cosentyx. My skin is all clear. I have some pain in hip and wrist. I am now walking to exercise and am quite hopeful."

• Zaz...
• Taken for 5 to 10 years
• May 21, 2017

For Plaque Psoriasis "I started this product as a clinical patient and have been very happy with the results. Before starting this program, my legs were red, sore, and flaking so bad that I didn't even like to wear shorts because of the staring I got from people. It has been 6 years now, and I now have one little spot on my shin, but I can live with that."

• Izz...
• Taken for less than 1 month
• February 21, 2025

Secukinumab for Psoriatic Arthritis "Started with a runny and dry cough. About 12 hours later, my legs hurt, a little later, my back hurt so bad I didn't feel like I could stand up or walk, and I felt really dizzy, followed by chest tightness that made me think I was having a heart attack."

• All...
• Taken for 2 to 5 years
• May 25, 2022

Secukinumab for Plaque Psoriasis "This medication was awful to inject and actually painful. It felt like I’d had a thumbtack poked in my leg. My scalp psoriasis came back, it was 100 percent clear prior when I was on Enbrel. By the time I had swapped back to Enbrel two weeks back after persevering with Cosentyx for about three years, my scalp was the worst it’s ever been. Topical medications didn’t touch the huge thick plaques that have reformed. I am missing large patches of hair as well, especially on the back of my head. I don’t know why the dermatologist even changed me to this. I should have changed back sooner. It was not the right medication for me. Super disappointed."

• and...
• Taken for 6 months to 1 year
• December 8, 2018

Secukinumab for Ankylosing Spondylitis "This is simply horrible... diarrhea, fatigue, more pain. Novartis, change this drug."

• Dan...
• August 2, 2017

Secukinumab for Psoriatic Arthritis "Had much more pain in joints than any other treatment, including methotrexate, Humira, and for a couple of years, nothing but Tylenol and Advil. Week 8, going back to Humira."