User Reviews for Secukinumab to treat Ankylosing Spondylitis
Also known as: Cosentyx
Secukinumab has an average rating of 3.9 out of 10 from a total of 27 ratings for the treatment of Ankylosing Spondylitis. 26% of users who reviewed this medication reported a positive effect, while 63% reported a negative effect.
Cosentyx (secukinumab): “I think these reviews need to be taken in context...most people rarely post positive comments about drugs, they are just to busy getting on with there lives, the people who have negative reactions are far more likely to post (and I feel deeply sorry for those for who it has not worked for) For me it’s been a life changer...I was on anti inflammatory meds, and sulfazalazine before, no anti-tnf. I started to feel better within 4-5 weeks of 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.”
Cosentyx (secukinumab): “I was in so much in pain. I was having a very hard to to get 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 diagnose with AS in December. I started Cosentyx in February 2020. I been on Cosentyx going on 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!”
Cosentyx (secukinumab): “I just completed my 5th weekly dosing of 300 mg. Now will be going monthly. My pain has decreased at least 80%. At this point, the medication has changed my significantly. Hoping going forward the results will be the same!”
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. Somedays I really struggle with my diagnosis.”
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 a allergic reaction to it (eczema under my feet and on hands etc). Was on no drugs what so ever for 4 months after that (and had worst pain ever, even worse than how it was before 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, 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”
Cosentyx (secukinumab): “Hi, 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”
Cosentyx (secukinumab): “Diagnosed with AS 11-20. Earlier in year I fractured my S/I joint from sports. Over 9 months docs treating me for fractured S/I joint. MRI’s continued to show growing edema up spine.Was on crutches for 6 months. Referred to rheum dr 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 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 50’s.”
Frequently asked questions
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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!!!!!”
Cosentyx (secukinumab): “Started secukinaumab 4 weeks ago and what a load of rubbish it is. I was told that it is a brilliant medication which after researching it its 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 secukinaumab. I feel like rubbish, I've got mouth sores and stomach just feels sore and very bloated. Drs will prescribed 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.”
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 eating pain killers and anti inflammatory drugs besides taking Cosentyx itself. I haven't felt this much pain in my entire life, should seriously be discontinued, all this drug is, is a false hope”
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.”
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.”
Cosentyx (secukinumab): “My husband switched Rheumy's & the new doc felt Remicade was not 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, 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.”
Cosentyx (secukinumab): “Severe as for 54 years-bilateral hip replacements 30 years ago-total fusion of spine-Benn, on Remicade for 10 plus years. Doc gave me a 150mg injection of consentyx 1 week post 200 mg Remicade infusion. Stared 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 cosentryx. Absolutely no way I would take it again. Back to Remicade. Tip-what also helps my AS is doxicyline-100 once per day. Try it.”
Cosentyx (secukinumab): “Stated this drug forAnkylosing spondylitis as in October after other biologics stopped working on 150mg monthly. Very light headed, fatigued joints, sore, tired all the time. I don't think this one has helped at all. I have a review with rheumatoglist on 20th Feb (1st review since starting this biologic) I'm gonna tell him it is no better. I've had AS from 2001 so know by now what works found Enbrel was the best 1 for me till it stopped working”
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 tonsilitis 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 !”
Cosentyx (secukinumab): “Was on loading dose for 5 weeks. Then increased by 50mg every two weeks, upped to 300gm after 4 months loss of mobility back ankle shoulder pain lots of inflammation. I was thriving on embrel but had to come off it 6 months in deteriorating and now will have to go back to drawing board.”
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.”
“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 .”
Cosentyx (secukinumab): “I have been using COSENTYX for 12 months. It was scary. Constant fatigue, stomach problems, terrible stagnation. I couldn’t go normally or roll over in bed. My spine and knees became completely flexed. Convulsions in the legs began.”
“Had Scapho (Secukinumab) injection for 6 months in India @ 1 per month for Ankylosing Spondylitis (AS). While 1st 5 vials gave some relief, my pain restored to original levels after 6th vial. Blood test reports also showed raised inflammation markers. Sent repeated mails to Novartis, to check on their serial number tracking or Blockchain enabled supply chain process. Novartis sent cursory replies upholding their distributors and finally conceded to not having any serial number tracking. Not wanting to waste further money, given this dicey situation, I gave up on Novartis and Scapho injection for good. Since then, my 3 miles jogging + basic stretch exercises every 6 hours along with sulfasalazine tablets have helped.”
Cosentyx (secukinumab): “I've finished the 5 week loading dose 3 weeks ago. It is not working for Ankylosing Spondylitis. I am very disappointed. My Dr is upping my dose to 300 mg and I hope that will work.”
Cosentyx (secukinumab): “I finished the loading dose with no improvement. My Dr upped me to 300 mg. I'm on month 4, I'm very fatigued and still in pain so I'm not impressed with it. I'm also experiencing mouth sores.”
Cosentyx (secukinumab): “This is simply horrible ... diarrhea, fatigue more pain. Novartis change this drug.”
Cosentyx (secukinumab): “Not long after starting this medication I ended up being rushed into hospital with a perforated bowel and sepsis. I nearly died due to complications and spent a few weeks on intensive care.”
This information is NOT intended to endorse any particular medication. While these reviews might be helpful, they are not a substitute for the expertise, knowledge and judgement of healthcare practitioners.
Learn more about Ankylosing Spondylitis
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