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Anybody been on Cosentyx ?

Posted , 25 users are following.

jim93390
jim93390

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.

2 likes, 65 replies

65 Replies

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  • nigel66012
    nigel66012 jim93390

    Posted

    I've now had 7 injections?? of cosentyx & having only one flare up? since taking.I've had some sneezing? as this lowers your Immune system?,but not to much I guess(side effects? of cosentyx)I Saw the nurse the other day & she said things have helped from my blood tests inflammatory? wise.I still have the usual stiff neck & tight chest that we get with AS,but so far I think cosentyx is helping me.

     

    • jim93390
      jim93390 nigel66012

      Posted

      wondering: what were U on prior to this biological?

      I WAS at 700 mg Remecade and reduced to 500 mg...all of the sicknesses I was having were killing me

    • nigel66012
      nigel66012

      Posted

      Just to add i'm still on sulfasalazine 500mg? with cosentyx.

    • jim93390
      jim93390 nigel66012

      Posted

      I was on sulfaslazine~20 years ago. It works good until your body builds an immune to it. Surprised that they do not have U on methotrexate.
  • nataliehunter
    nataliehunter jim93390

    Posted

    Hello! 

    new to the community here and definitely interested in hearing from anyone who has liked or disliked cosentyx. I am newly diagnosed, 24y/o female with no fusion yet but beginning stages in iliosacral. I am concerned with the malignancy risks of TNF inhibitors like simponi, enbryl, cimzia etc.

    I am more optimistic about cosentyx due to its unique mechanism of action and pathway to reduce inflammation but it is so new to market in Canada and so not all aspects are as well studied. 

    I would definitely like to hear from anyone with first hand experience as I will be deciding on a biologic treatment shortly.

    Cheers 

  • Onscapho
    Onscapho jim93390

    Posted

    Hi all, cosentyx is known as scapho here in india and is working wonderfully for ankylosing spondylitis. Also the cost is just 15000 indian rupees for one vial.

    I just wanted to know how much is the cost of cosentyx ?

    Please help me because if its cheaper then i will be taking cosentyx when i am travelling.

  • kevin78669
    kevin78669 jim93390

    Posted

    I did Enbrel. It caused severe hives on me that was denied as the cause by the Kaiser subscriber. I was switced to Humera. It did the same, but worse. The hives were all over my head  and face too.

    For the last 2 years I have been on Cosentyx. I believe I have been suffering from fatigue, and intestinal issues. I will not take it anymore and just go back to ibuprofen. The back pain sucks, but these other drugs just seem to be killing me literally!

    I would suggest to not take the drug companies experiments and just keep your weight down and stretch, like yoga. Keep the joints limber. All three drugs I listed worked for AS, but caused worse side effects that are life threatening!

    • jim93390
      jim93390 kevin78669

      Posted

      Kevin: we all suffer from the fatigue. It is the "nature of the beast" with this disease.

      Stretching is an excellent suggestion. I recently retired ...could not handle the stress and being sick. I feel 100% better!!

      Comment to Sunlight2: your jogging/running is hammering your spine. You need to perform other cardio exercises like stationary bike, eliptical, stair stepper

  • sunlight2
    sunlight2 jim93390

    Posted

    Hi Jim...thanks for the info. Is that the empirical advice for AS, not to run? In the past I have also enjoyed mountain biking which really does rattle the body. I wondered if that's where it all started in fact.

     

    • kevin78669
      kevin78669 sunlight2

      Posted

      sunlight it is my understanding that AS is a heredity genetic disease. Your body is attacking itself thus we look to take immune system suppressants. 
    • jim93390
      jim93390 sunlight2

      Posted

      The suggestion is LOW Impact exercises. Every time your foot hits the ground Investigation have shown that forces of up to 300% body weight can occur even during normal walking, and this may rise to 550% during running. Researchers have reported impact forces during running as much as 4 to 8 times higher than those during walking.Tis can be compounded from the surface you are running on also!

       

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