Secukinumab for Ankylosing Spondylitis User Reviews

• Tim...
• Taken for 1 to 6 months
• January 23, 2020

Cosentyx (secukinumab) "I think these reviews need to be taken in context...most people rarely post positive comments about drugs, they are just too busy getting on with their lives. The people who have negative reactions are far more likely to post (and I feel deeply sorry for those for whom it has not worked). For me, it’s been a life-changer. I was on anti-inflammatory meds and sulfasalazine before, no anti-TNF. I started to feel better within 4-5 weeks of the first injections (taken weekly). Now, no more aches and pains, no stiffness. This literally has been a miracle cure for me. I think it’s much more effective if you haven’t been on anti-TNF or similar before."

• TCa...
• Taken for 1 to 6 months
• April 30, 2020

Cosentyx (secukinumab) "I was in so much pain. I was having a very hard time getting up from a chair. There are times someone had to help me up because I could not do it at all. I am in my 30s, there are times I felt embarrassed to get help getting out of the chair. I got diagnosed with AS in December. I started Cosentyx in February 2020. I've been on Cosentyx for almost three months. I feel like I have my life back. I do yoga and I am trying to do Pilates. I am finally free from the pain!"

• Kat...
• Taken for 1 to 6 months
• November 12, 2019

Cosentyx (secukinumab) "I just completed my 5th weekly dosing of 300 mg. Now I will be going monthly. My pain has decreased at least 80%. At this point, the medication has changed my life significantly. Hoping going forward the results will be the same!"

• Meg...
• Taken for 6 months to 1 year
• August 19, 2020

Cosentyx (secukinumab) "I've tried Enbrel with no change in inflammatory markers. I was on it for 3 months. I started Cosentyx single injections, and my markers went sky high. I was put onto a double injection, and my markers went down significantly. I don't feel any relief from pain, never have with any of the millions of things I've been prescribed. But all in all, I've had a positive experience with Cosentyx. Just wish I could get some help with my pain levels. I have just turned 31, and I feel as though I'm trapped in the body of an 80-year-old. Some days I really struggle with my diagnosis."

• Pos...
• January 27, 2017

Cosentyx (secukinumab) "I have had this aggressive illness since the age of 20. I am now 31 and have been put onto Cosentyx. I just had my first injection today and have had less pain and stiffness already. Given that I had tried every other treatment option, this was the last form of treatment for ankylosing spondylitis. No side effects as yet. Hope this treatment is the one. Regards, Posso"

• Anonymous
• Taken for 6 months to 1 year
• January 7, 2021

Cosentyx (secukinumab) "I started with Humira, had that for 3 years, then out of the blue, it stopped working. Was then on Benepali and got an allergic reaction to it (eczema under my feet and on my hands, etc.). Was on no drugs whatsoever for 4 months after that (and had the worst pain ever, even worse than how it was before I started with Humira). Then I started with Cosentyx, and it has so far - knock on wood - worked great. I am absolutely pain-free and have more or less no side effects. 'More or less side effects'... I have had the same side effects of all of these drugs (except the allergy). I am fatigued, and every now and then I have some bowel problems and headaches. But I can live with that because I am nevertheless feeling better than with no treatment, and even the fatigue I get from the disease is worse than the fatigue from the treatment. This disease will never go away, and I'm just happy that there are some treatments that actually work."

• Sco...
• March 3, 2021

Cosentyx (secukinumab) "Diagnosed with AS 11-20. Earlier in the year, I fractured my S/I joint from sports. Over 9 months, docs treating me for fractured S/I joint. MRIs continued to show growing edema up the spine. Was on crutches for 6 months. Referred to rheum doctor and was told I have AS. After the AS diagnosis, 5 weeks of loading dose (300). After that, I went to once a month, still 300. I felt I had immediate positive results, big changes quickly. No need for the crutches. On monthly doses for 3 months. The quick positive changes have slowed down, but I still feel better than in 2020. Occasional fatigue, but I credit that to lack of activity for over a year. I went from playing competitive sports three nights a week to nothing, so I was out of shape. I’ve had none of the side effects I’ve read on these reviews except some fatigue. I’m willing to continue treatment. Had I read these reviews prior to starting treatment, I may have declined. I’m off crutches, and I’m feeling better than I did. I’m in my 50s."

• Hop...
• December 18, 2016

Cosentyx (secukinumab) "After fourth injections, started light-headed, nausea, feel like diarrhea constant, ear drainage, white stuff in eyes, very tired, sleeping ten to fourteen hours a day. Doctor will not call me back. Don't know what to do!!!!!"

• Iri...
• Taken for 1 to 2 years
• August 26, 2021

Cosentyx (secukinumab) "Game changer for me. I have just turned 37 years old, and this drug has given me my life back. I played football for over 12 years and was always injured, major back and hip problems. Then when I stopped, my GP figured out why. A rheumatologist diagnosed me at age 34 after years of agony. Tried all NSAIDs, and nothing worked, I couldn’t walk further than 0.5 km without agonizing pain. From being a fit and slim athletic mother of 3 children to being a cripple. I can now play ball with my kids again, go for long walks, etc., without any pain whatsoever. Miracle drug for me. I will say it takes a few months to work, so please give it time, it’s worth the wait."

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

Cosentyx (secukinumab) "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."

• Ayo...
• November 29, 2016

Cosentyx (secukinumab) "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."

• Ank...
• Taken for less than 1 month
• April 20, 2019

Cosentyx (secukinumab) "Started secukinumab 4 weeks ago, and what a load of rubbish it is. I was told that it is a brilliant medication, which after researching it, it's not at all. Was on Enbrel for 12 years, and it worked very well till they put me on Benepali (etanercept in UK), then after 3 months back on Enbrel brand, which just didn't seem to work anymore, and now on secukinumab. I feel like rubbish, I've got mouth sores, and my stomach just feels sore and very bloated. Drs will prescribe you anything when they get bonuses from prescribing it. I'm gonna ring the hospital and tell them I wanna stop it and try something else, as I just want my life back."

• Des...
• Taken for 1 to 6 months
• April 16, 2018

Cosentyx (secukinumab) "In January, I felt that Enbrel stopped working for me after years of great relief. Doctor started me on Cosentyx. I have taken the 5 doses of the loading dose and feel horrible! Diarrhea, irritable bowel, terrible mouth sores, light-headed, and general malaise. I never had bowel issues before this. Doctor wants me to give it more time (I'm due for an injection this week), but the side effects have thrown my life into a tailspin! I want my Enbrel life back, this is no way to live. I have to plan my work around access to a bathroom in a hurry, and I speak funny because the sores all over my tongue hurt while speaking."

• Ang...
• May 11, 2022

Cosentyx (secukinumab) "After trying every possible NSAID over the past ten years, I was on prednisone for almost a year before that stopped working as well. I was always reluctant to give biologics a try, but then I could not live with the pain anymore. Cosentyx is the first one I tried, and I started feeling better within 2 weeks of the first injection. I am now on it for 10 months and have to say it gave me my life back. I have no pain, and I am doing sports again I thought I never could anymore. I am so happy with it."

• but...
• Taken for 1 to 6 months
• September 13, 2017

Cosentyx (secukinumab) "My husband switched rheumatologists, and the new doc felt Remicade was no longer controlling his AS as his C-spine has started to fuse. After 3 months of talking up the benefits of Cosentyx, my husband made the switch. Worse decision ever. Quality of life is horrible, he lives in his recliner once again. Back pain severe. Joints swollen, which never happened before. And the worst part, 3 bouts of upper respiratory infections, the last one is now pneumonia. Doc says at first not the Cosentyx...but it's a side effect, I say. Duh. Very disappointed. Hope he can restart Remicade."

• pas...
• February 6, 2018

Cosentyx (secukinumab) "Severe as for 54 years - bilateral hip replacements 30 years ago - total fusion of spine - Been on Remicade for 10 plus years. Doc gave me a 150 mg injection of Cosentyx 1 week post 200 mg Remicade infusion. Started shaking uncontrollably for an hour followed by chills until early morning. Then the whole body itching and runny nose started followed by hives near the injection site. My eyes were the worst and wouldn't stop itching, and I started wheezing with each breath. Took almost 30 days for the symptoms to stop. Told the doc, and she thought it was just a cold and wanted to continue Cosentyx. Absolutely no way I would take it again. Back to Remicade. Tip - what also helps my AS is doxycycline - 100 once per day. Try it."

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

Cosentyx (secukinumab) "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."

• Vin...
• Taken for 6 months to 1 year
• August 4, 2021

Cosentyx (secukinumab) "I wasn't diagnosed with AS until my late 40s. When all the damage is already done, and your sacroiliac joints are fused together, I guess you can't expect anything to help the pain much. Humira and Enbrel didn't help me much, either. After 6 months, it's time to try something else. There are only 3 other Rx meds approved for AS I have yet to try. People lucky enough to be diagnosed at a younger age should consider getting on a biologic before the damage is already done and it's too late to get any better!"

• GMR...
• January 4, 2018

Cosentyx (secukinumab) "This drug caused me nothing but grief! It was not worth the side effects for the tiny fraction of relief! By month 3, I had a bad case of tonsillitis, which I could not get rid of! I always felt ill, with swollen glands, tired, and very fatigued! Even after a tonsillectomy, which was horrible and never healed right, I feel like garbage!"

• Jay...
• Taken for 2 to 5 years
• August 29, 2023

Cosentyx (secukinumab) "Switched to Cosentyx in 2017 for plaque psoriasis. Three months later, came the ankylosing diagnosis. To date, 7/22, it has been an absolute lifesaver for me. Psoriasis 100% clear and a tremendous help with low back and hip pain. Hoping for these results to be a lifetime. 2 150 mg/ml pens a month and get on with life."

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

Cosentyx (secukinumab) "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."

• Mik...
• Taken for 2 to 5 years
• December 26, 2023

Cosentyx (secukinumab) "Been on Cosentyx for 2 years now, 300mg every 3 weeks. My mobility has increased tremendously and I live with very few flare-ups. I was on Humira originally but kept having reactions to it, so I was switched to Cosentyx and loving the outcome. I was diagnosed with rheumatoid in 1983 and then diagnosed with AS in 1998. My body is so far gone before biologics that it has definitely helped mobility, but I still live with a ton of pain unfortunately. But I've learned you can't give up, so just keep on going no matter how tough it is."

• Ruf...
• Taken for 1 to 2 years
• July 18, 2019

"Found out I had Ankylosing Spondylitis from blood test after lots of pain and no appetite . Inflammation at 70, sed rate bad. I started on Remicade 2nd bag almost died, then tried Humara nothing . Started the loading dose for Cosentyx could fell it working immediately . My blood came back into shape, inflammation 5 sed rate good . still have some joint pain but nothing like before. I hope I can just ride this one out for awhile ."

• jan...
• Taken for 1 to 6 months
• April 22, 2021

Cosentyx (secukinumab) "I was on Simponi for 5 years and worked great till it started to wear off and I got psoriasis. So my doctor tells me about Cosentyx and how it will help the AS and psoriasis at the same time. Got me on 150 mg, 5 doses then 1 monthly. Psoriasis worsened, now I am at the 9th dose and back pain is like when I was taking nothing at all. I see 300mg doses are recommended so that is my only hope if they increase the dose. P.S. psoriasis and itchy rash almost gone after treating it with corticosteroid creme. Before that it was just getting worse."

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

Cosentyx (secukinumab) "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 than it stopped switched to humaria 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, 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"