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jim93390 jim93390

Anybody been on Cosentyx ?

And if so, plase supply some feedback.

Also, is it true that remecade is the choice of drug for AS patients?

I was on humera for a short spell and the results were not good so I went back on remecade.

Eventually once  again  I would like to "try" something else, humera was not the answer and embryl will probably not work either.

47 Replies

  • hickory hickory jim93390

    I have just finished the loading phase of Remacade and have noticed no real change. Time will tell I guess. Remacade was the only med I have tried. Wish I could be helpful. 

    Best of luck,

    sosume.

  • jjn80 jjn80 jim93390

    Hi there! How long were you on Humira for? I'm considering it. Cosentyx was suggested to me by my rheumatologist, but apparently it's fairly new to the market (only couple of years) and there isn't a ton of research or studies behind it. I mean they are all pretty much the same, but atleast with Humira, it's been around for a while and we are aware of side affects (which scare me). Did you experience a weakened immune system or get any infections?

    • jim93390 jim93390 jjn80

      Was on Humira for 6 months. I would like to add that I temporarly switched rhume's and the new one was clueless to my issues, concerns, or setbacks...just the line of BS that the insurance co, will not allow increased dosage or frequency until I have been on the drug for 1 year.  It was the advise of an ENT dr. that I switched rhume's. Anyways to make a long story short I am with my old rhume dr. and back to 7 weeks intervals of 750 mg. remecade. I am coping much better with the remecade vs humera. My current rhume could not understand why I was on such a low dosage of humera when I was on the upper limits of remecade. Changes in weather play an important factor in how I feel.

      I fatigue easily even on good days. Trying some vitamins to see if that will get me out of this slump of tiredness. Any advise from members is welcome. 

    • jjn80 jjn80 jim93390

      I know - and that's what worries me! Were you sick with common cold / flu or something more severe like the infections they talk about in the warning / side affects? How long have u been dealing with AS? Are you fused or starting to fuse? Luckily, my spine is ok. I have to get X-rays at 2 year intervals to ensure that I don't fuse.

    • ama38049 ama38049 jim93390

      Take vitamin C. It may alter some of your blood tests after a while (kind of saying that the test shows a high level of vitamin C so the test is not conclusive) but it helps. Especially high dosage.

    • jjn80 jjn80 ama38049

      Yup! I do - along with other supplements . Fish oil (especially the "EPA" in it) and turmeric are said to be good for reducing inflammation. Although, I don't know for sure if it helps, I still take them anyway.

    • jjn80 jjn80 jim93390

      I think I know about the fatigue. Have you had your iron and B12 levels checked? I was borderline anemic and decided to go on an iron supplement. I feel much better. My iron pill has b12 in it as well. I know when both these levels become on the lower side that it can cause fatigue. Do I still have a bit of fatigue? Yes I do, but I find its more manageable since I've been taking an iron pills and I don't get that overwhelming fatigue that overtakes your day. Talk to your rheumie about getting these levels checked. Might do you some good! :-)

    • jim93390 jim93390 jjn80

      had double pneumonia earlier this year which started as influenza.

      Almost did-me-in was in hosp for 4 days and missed 2 weeks of work. just got over a spell of Clostridium difficile (C-diff) from taking antibiotics that kill off the good bateria in your gut. 1st time with that!.

      Have had AS for ~20 years and generall do fairly well. Exercise and healthy eating are key. I just cannot shake the fatigue, although I started taking multiple vitamins which seem ? to help.

      spine is mostly fused.

    • jim93390 jim93390 jjn80

      hjave had B vitamin deficency checked and YES everybody is low including me. I sometimes take a liquid "boost" which has mega of vit. B6 and B12, including caffeine. strated taking vitamin (multiple) and jury is still out on that.

      Thanks for the input! :-)lol

    • lynette7750 lynette7750 jjn80

      Hi I was prescribed Enbrel for psoriasis a couple of years ago.  After a few months on it I got really sick and was in hospital with viral pneumonia and other life threatening problems.  I did not connect it with the drug at the time as it was diagnosed as a 'mysterious virus'. I did not respond well to the Enbrel so Doc changed me to Cosentyx.   During the initial stages of the treatment I got diahrea and was diagnosed with collageneous colitis.  Symptoms gradually got worse and I became very sick again and to cut a long story short ended up having my whole bowel removed and now have a colostomy bag.  It is a very difficult thing to prove but I am totally convinced that the drug lowered my immune system so far that I was attacked by a virus which destroyed my bowel.  Has anyone else (or know of anyone else) who has had that problem or similar?  I believe I am in the minority but still it is certainly something to be considered.  

    • jim93390 jim93390

      Vitamins seem to help me. Automatically take a 1-a-day in the am with my other happy pills and I seem to have more energy than normal. Have infusion next week and normally by this time I am feeling achey and tired, but not this time.

    • jjn80 jjn80 jim93390

      Hey there! Thought you'd be interested in this. Novaritis, makers of Cosenxtyx issued a press release in June of this year stating that it may be better than Humira and that up to 80% of ankylosing spondylitis patients treated with Cosentyx at two years had no radiographic progression in the spine or joints. There will also be a head-to-head clinical trial planned to compare Cosentyx versus Humira. Search this article title: "Novartis presents new scientific evidence for Cosentyx in ankylosing spondylitis and psoriatic arthritis patients at EULAR 2016". Interesting read!

    • jim93390 jim93390 jjn80

      Great, thanks. I e-mailed them asking how their drug works verses remecade. Remecade works by blocking the TNF while Cosenxtyx works on the IL-17A marker. Want them to put it in laymans termonology.

    • jim93390 jim93390 jjn80

      YES, taking 25 mg. per week. Most people on TNF inhibitors are on Methotrexate. One of the drugs works with the DNA and the other works with the RNA (TNF inhibitors/methotrexate) Essentially they work in conjunction with each other. Thats the extent of my knowledge on this subject. Never had any issues with the liver function with taking methotrexate, although my rhume insists on me getting blood work done every 2 months. It can be hard on the liver, even more so if a person consumes large quantities of alcohol: Not me cool

    • tom51457 tom51457 jjn80

      Hi

      Just a different experience in terms of side effects for me. Have had AS for over fifty years and before the biologics came along didn't have a lot of movement to say the least. Since 2008 I have tried humera, enbrel and since 2012 have been on Simponi which is working best of all. My life has totally changed because of these meds and am now back cycling, cross country skiing and hiking. What I want to do is ease your mind about the side affects. Although the drugs do suppress your immune system to work, I can honestly say I have never had so much as a common cold since I have been on them whereas prior to starting them I used to be picking up anything going around! Odd but true. Hope they work as well for you!!

    • jjn80 jjn80 tom51457

      So good to hear something positive! I'm so nervous starting Humira with all the side affects. Failed four NSAID's and now looking to TNF inhibitor. So desperately want the nagging SI joint pain to disappear!

    • tammy72891 tammy72891 lynette7750

      First I a, so sorry this happened to you. I have just joined. I found this because I have been searching to figure out what is happeneing. to me. I am due for my third cosentyx injection on friday, still in the loading doses. My ibs was not an issue before this med. Humira short term did not help so this was going to be the greatest thing to get my life back. The very first shot my whole left side was untouchable my colon was spasming. My rheumy gone assoc said treat with otc...After second shot went to er head pounding I couldnt hardly see and could not stop throwing up. I have psa...my pain is much worse in joints but not swelling like a flair. 

      I am so truly sorry but feel blessed to have found your post. I believe I will take what has happened to you and already have the signs and be done with this med. I thought the first time one more shot. I asked rheumy assoc if this was expected she said they dont know but to early to give up on med and just treat symptoms. My psa is active I need to get some sort of control. But there is not enough info to stay on this drug id from the word go there are issues. Thank you

       

    • jim93390 jim93390 tammy72891

      stayed on Remecade Tammy.

      Rhume said that it is the gold treatment for AS patients.

      Exercise is also a great habit to get into for mental and physical reasons. It is easy to become disgusted with your body doing this to U BUT we live in an age that biological drugs are doing wonders.

      Rhume did tell me that their is another drug coming out to replace methotrexate. She is going to keep me in=the=loop with thisone. Say's the results have been very promising with a small population of patients that have been on it.

      Recently I was sick (flu) and had to wait an additional 3 weeks past my due date for my remecade. I was one hurting boy. dont want to do that again.

      Have a fair share of colds because of the autoimmune deficencies and the symptoms are worse for me...it usually ends up in my lungs and have to go on antibiotics and predizone. I hate both drugs BUT they have kept me alive for this long and could not of gotten by without them.

      Try the remecade....I think U will be happier

      Jim

    • bob90170 bob90170 lynette7750

      I was switched to cosentyx from humira a year ago. This summer I got an abcess in my spine which required emergency surgery. Lucky I did not die or get paralyzed. Doctors said I was nowhere near the typical patient for this type of event.

  • kay72736 kay72736 jim93390

    Hi Jim

    I dont know about Remecade.  I am on Enbrel and Sulfasazadine.  Only 2 weeks on Enbrel and feel pretty awful for 3 days after the 50 ml pencil injection and no change to the back and SI joint pain nor fatigue and headache and chest pain.  Can you tell me about your experience with Enbrel?  I have been told Humira is good?  (by a Rheumotolgist) though Enbrel has less side effects.  All the best.

    • jim93390 jim93390 kay72736

      Never was on Enbrel. Tried Humera with disastrous results.  Our bodies all react differently to the biological drugs out there. I was on Sulfasazadine about 12 years ago but built up an immunity to it. Next line of defense is methotrexate. After that an combination of methotrexate and biologicals. been on biologicals for ~12 years with methotrexate and occasionally have flare ups. Considered many times to switch to something else and one of my choices would (possibly) be Cosenoix. That's how this discussion originated: me asking about users of this drug.

      The ONLY dislike for Remecade is the infusions every 7 weeks with the driving and 2.5 hour downtime.

  • kay72736 kay72736 jim93390

    Thx Jim, sorry I misread that you had been on Enbrel.  You are right it is difficult to find the right medication.  I think part of it is understanding the progress of the disease and managing your lifestyle (and the pain) as well as a drug that helps with all that!  So far neither NSAIDS Sulfasalazine and now Enbrel seem to have little benefit but maybe they are doing alot more than if I was on nothing at all!  12 years is a long time to be on Biologicals and I hope they continue to help you with minimal adverse effects (which ever it may be). K

    • jim93390 jim93390 kay72736

      NP!

      Kay, it is time for U to be on something more potent. Once the damage (fusing) is done you cannot turn the clock back. Me, I maintain my sanity/health by exercising daily: yoga, spinning, pilattes, sculpt and tone, hard bodies, etc. Have to watch my sugar intake...diffuclt to accomplish but the benefits outweigh the consequences. Rhume told me that remecade was the best treatment and so far she has been correct. I was in sulsafine for 2-3 years and it did seem to help for a spell, but my body developed an immunity to it and had to go with something more powerful which was methotrexate, and then combo of methotrexate and remecade. I am awaiting the comments from Cosentyx, as to my inquiry about how their drug works differently than remecade.

      will keep in touch,

      Jim

       

    • kay72736 kay72736 jim93390

      Jim I agree with the exercise and diet.  I have cut out Dairy and Gluten, ofcourse one gets xaught out every now and then when a restaurnat tells 'fib's' about what is in the food!  And exercise too, I do my own physio at home, swim and walk (though that seems to hurt these days).   Enjoy this and ambition is to do Yoga or Pilates.  I am on Enbrel now.   Side and long term affects of these drugs concern me greatly though on the really bad pain and fatigue days one is grateful.  Occasionaly i take pain medications too and use the cream.  I would love to be certain what triggers the worst days.??!!!  My brother has As very early in life and has no drugs and no xray damage now at 60 years old, by lifestyle.  I am unable to work for some time now but hope to again in the future. K

    • jim93390 jim93390 kay72736

      For me, change in weather (barometric pressure) will trigger it, possibly U 2.  I need more sleep during those times, and I push myself less. Side/long term effects are there YES, but if U weigh your options you are still better with a biologic.

      You have to think of who made up the side effects? probably attornys to protect the mother company. Crap, more people die from aspirin (and aspirin deritives) than car accidents. You do not see this kind of warnings on the aspirin bottles.

      We just need to outlive to the day that they can solve this riddle that we have. Myself, I do not like being treated for the effects and not the cause either. We have about a handful of choices out there.

  • bazfraz bazfraz jim93390

    Hi I'm currently on cosentyx and it's possibly the best thing Iv ever done I went from from not sleeping from back pain and pain around my ribs to no pain at all and I'm only on my third injection Iv had AS for over 10 years now with a fair few flair ups in that time I'm 30 btw but I can now safely say I'm excited for the future these injection have given me back my life I highly recommend them!

    • jjn80 jjn80 bazfraz

      That is so great! Just curiously, why is that the drug of choice, and not Humira, Remecade or other biologics? I'm pretty sure I'm going to start a biologic in a couple months and I'm still not sure which one I'm choosing.

    • bazfraz bazfraz jjn80

      Well I had a choice of all of them and was told they were all slow acting taking a good month before the results were seen but with cosentyx it works straight away and I was also keen on trying something new and so far I have no complaints but with it being relatively untried im not sure what the future holds but atleast I'm now away from taking 6 tablets a day and having regular injections in my back which is amazing and money saving!!

    • jim93390 jim93390 bazfraz

      Awesome, happy to hear that. My rhume. has a few patients with AS and she said that one of them is on cosentyx-that was 3 months that she told me. I will be seeing her next month and will inquire about status. So do U self inject yourself? and at what frequency?

       

  • john45638 john45638 jim93390

    I been on cosentyx for 3 months and seen a dramatic improvement in my AS flare. During my flare I have tried embrel, humara, and a new drug called acthar, I got more relief from acthar than the others. But I seem to have better results with cosentyx as soon as I finished my loading dose. Good luck in finding what works.

  • louise180468 louise180468 jim93390

    Hi, I have recently been diagnosed after suffering with RA for 17 years. Would say I am chronic at the moment and so tired I just want to lie down and sleep but I know that's probably the worst thing I could do!! Due to start Cosentyx next week but concerned about side effects. Read on here that someone had to have their bowel removed after difficulties and they said they were sure the drug caused this, although medical professionals won't accept that. 

    My initial concern is lung problems as on Methotrexate I contacted Pneumonia. Scared in case I get the same problem. 

    Would really appreciate Consentyx feedback.

    Thanks

    • jim93390 jim93390 louise180468

      Rhume. had me stay on Remicade as she was not impressed with Cosentyx results.

      ALL of the biological drugs make a person more susceptible to colds, viral and other assortment of illnesses.

      To protect you from SOME strains of pneumonia their are injections available.

      Do that, for sure.

      Wash hands religiously, stay away from sick people...etc.

       

  • cameron14972 cameron14972 jim93390

    I am 53 diagnosed with AS about three years ago. I have been treated with Indomethicin, Methotrexate and Humira. 

    Recently I had an unprovoked pulmonary embolism. I have since stopped the Indomethicin and Humira. They were replaced with Cosentyx. I took my first shot five days ago without a loading dose. 

    Now I am not a sales rep for Cosentyx and I know its only been five days, but I feel better than I have felt in years. It may just be a coincidence that I am feeling this good, only time will tell.

    Cameron

    • harold75373 harold75373 cameron14972

      Hello Cameron, Just curious if your still experiencing improvement with Cosentyx? I'm 51 and was diagnosed with AS in my late 20's  and have been taking Humira for several years now, but, thinking of making a change to Cosentyx. My doctor added Gabapentin about 6 months and thats really helped, however, hopefully more improvement to come.

      Harold

  • sheryl70407 sheryl70407 jim93390

    I was diagnosed with AS over 7 years ago.  I was treated with methotrexate and enbrel for a year or two with good results.  When that stopped working, I continued methotrexate and added humira, this also helped for about a year.  For the next 4 years I was treated with remicade and methotrexate.  When the remicade stopped working, I was placed on methotrexate and consentyx.  I have now been on consentyx for over 6 months and have had great results.  I not only have symptoms in my spine, but also in my hands, shoulders, and Achilles tendons.  I noticed lessening of all my symptoms within 2 months of starting the cosentyx and at this point, my AS is under the best control ever.  I am hopeful that this will last longer than the other medications.  I have not had any bad side effects from the cosentyx and it is so much more convenient (I self administer) versus needing to have a 3 hour infusion every 6 weeks.  The cost has been completely covered so far between my insurance company and Novartis.  If cosentyx is recommended for you, I highly recommend that you try it.  

    • jim93390 jim93390 sheryl70407

      I like your progress.

      Myself, I have been on 700 mg. Rema cade 6 week dosages for ~1 year and before that varying amounts and intervals for ~15 years.1

      The last 2 years have been awful for sicknesses. Had double pneumonia, several viral colds and most recently shingles and bell's palsy. Was hospitalized for the pneumonia and many urgent care trips for the other issues i am at the point now that Do I want to cope with more ra symptoms or die from other issues. I am becoming sick way too often. At minimal I am going to reduce my dosages of Remicade and seek a better solution.

  • sunlight2 sunlight2 jim93390

    Sorry to resurrect an old thread, but reading through this I was struck (and was worried by) the fact that these meds seem to have a fairly short efficacy lifespan. I had hoped these treatments, if tolerated, would be for life. If one is diagnosed in mid 30s or earlier, this means you might quickly cycle through these treatments before hitting your 50s.

    I guess all the more reason to try and fight this with exercise and NSAIDs for as long as possible before moving onto anti-TNFs?

    And let's hope Cosentyx is the answer to our prayers here.

    • jim93390 jim93390 sunlight2

      They ALL affect your immune system, not sure if one biological is better than another. Will need to ask my rhume about that. January I am reducing my dosage of Remecade from 700 to 500 mg. May try some herbal to boost my immune system???

      Age is also a contributing factor

    • JZ42139 JZ42139 sunlight2

      Hi sunlight,

      I am new to this group and was diagnosed recently with AS. (Although, I have had symptoms that have gotten progressively worse the past few years.) Have you been taking anti-TNFs or do you use exercise and NSAIDs for AS? I felt like my rheumatologist was really trying to sell me on Humira but the possible risks seemed to great for me. I am trying an anti-inflammation diet and I know I need to get out more but I am soo tired all the time. If you have any  suggestions about exercise, I would appreciate it. The pain and stiffness is awful but they say it gets better with movement? I'm not quite sure.

    • sunlight2 sunlight2 JZ42139

      Hi JZ...well, I haven't been diagnosed yet but will be amazed if I don't have AS. All the symptoms absolutely check out - lower back pain, migrating recently to the ribs and chest area. I'm waiting for a rheum appointment in the UK and have already had X-rays, which showed nothing.

      I must say I'm not 100% sure about exercise. It seems to help in the moment of doing it, but sometimes the next day I've had pain (particularly if I've been exercising my chest). I'm going to investigate swimming as an option, which is apparently more gentle on the body. But generally I do it for my mental health, particularly cycling.

      I would however say that stretching is essential. I find the UK's charity, NASS, useful for this. Below is a link to their stretching and exercise programme. One is an app you can download, the second is a book which I bought from their site and is a good guide.

      https://nass.co.uk/exercise/back-to-action/

    • JZ42139 JZ42139 sunlight2

      Hi Sunlight2, thank you so much for suggesting the NASS cite! What a great resource, I am going to look into purchasing one of their books. 

      And I hope for you that you don't have AS, but if you do I hope you are able to find the treatment that works best for you! I said the same thing before being officially diagnosed last month though - "I will be surprised if my rheumatologist says I don't have AS." Were you tested for the HLA B27 gene? Are you able to get an MRI? I have had both x-rays and MRI but the MRI picked up the fusion beginning in my neck.

      Thank you for the resource. I have heard swimming is much better because it's gentler on the bones.  I'm going to practice their stretches too. 

       

    • sunlight2 sunlight2 JZ42139

      Hi JZ...I'm negative for HLA-B27 and my other bloods were also within normal ranges. Coupled with my X-Rays not showing anything maybe that makes me 'that' difficult person to diagnose. But I have an appt with a rheumy in February and hopefully that will lead to an MRI.

      In addition, two other symptoms recently appeared: crepitus (crunching sound) in my neck, along with pain in my neck if I don't get my pillow height EXACTLY right. And a clicking in my right hip when I flex it above 90 degrees.

      There are other things I don't have: no eye problems or heel pain; no shoulder pain or shooting pain in the legs or buttocks. So I'm grateful for that.

      But the back pain is constant (Ibuprofen does dull it but it rarely goes completely) and the chest pain worries me the most.

    • jim93390 jim93390 sunlight2

      maybe U have osteo in your neck/back?.

      The heel pain is one of the predecessors to AS not necessarily continuous.

      Eye problem would be from iriitis and would also be an ocassional symptom.

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