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Going off Xolair

Posted , 6 users are following.

jana94738
jana94738

Hi all..

I am curious i have been on xolair almost three years.. Has anyone tried to go off of it and gotten the hives back really bad then tried the xolair again and it did not work.. I have heard this so I m afraid to go off of it.. and in fact each time i try to extend my shot the hives come back a little until i get my shot.. thanks Jana

0 likes, 11 replies

11 Replies

  • suze81
    suze81 jana94738

    Posted

    I shall be following this with interest. I have heard the same. I am coming up to 2 years with 14 week gaps between injections. I 'push the envelope' each time, trying to extend the time between treatments, but when I get the 'tingles,' I reach for the syringes.

    • jana94738
      jana94738 suze81

      Posted

      Do you give yourself the shots.. they wont let me i have to go to the hospital infusion center each month for mine..

    • suze81
      suze81 jana94738

      Posted

      yes, I live in France and after getting a nurse to show me, I do it myself.

  • Likely_Odd
    Likely_Odd jana94738

    Edited

    Also following this thread with much interest.

    I'll be so scared if it suddenly stops working. My hives made life unlivable.

  • jana94738
    jana94738

    Posted

    Do either of you get itchy at times but dont ever break out in hives. I do that and just not sure if it is gluten or sugar.. but it drives me nuts at time but thankful that it is not hives.. those were horrible..

    • suze81
      suze81 jana94738

      Posted

      I don't get itchy as such, but I do get a weird sensation when I'm ready for a shot. Like pretty much everyone else on this site, I have no idea what triggers it but, in my case, I am sure it's gut related. My hives started 3 years ago after a tooth abscess and 2 courses of antibiotics, so I think that messed with my delicate constitution.Occasionally, my stomach would 'gurgle' noisily and I could almost feel the Xolair doing...whatever it does.This is happening less and less, but I'm still nervous of going off the X.

  • jana94738
    jana94738

    Posted

    Allergra I take that for my allergies but it doesnt help the itching..

  • natasha18366
    natasha18366 jana94738

    Posted

    i was on Xolair (300ml for 1.5 years. have had horrid side effects since the first time i used it - severe lethargy for 1-2 days after the injection, aching bones and sore muscles and bad skin, anxiety, a lot of pain in the injection site but i persisted with it because it controlled my hives and angioedema. However, the last couple of doses i actually felt worse after having it, id be clear of hives and then have the injection and would have flare ups for a couple of days. i stopped it 3 months ago (against my immunologists advice) and havent had any big flare ups- i get a few hives if i eat certain food, always when i drink alcohol or if i am very stressed.

    since being in remission ive been diagnosed with hyperthyroidism.

    • jana94738
      jana94738 natasha18366

      Posted

      Hi i am just so afraid of going off xolair i used to get the achy joints but only do sometimes now.. I do get itchy but so does my husband and lots of other ppl I know and i have been itchy way before i got the shot in thinking back about all this so i guess it has nothing to do with the shot.. anyway my hives were so horrible i dont really want to chance going off and even having a couple as a couple leads to way more.I have been diagnosed with thyroid issues around the time i got the hives so maybe that is the key.. it is under control but i still have it no cure for it so i prob still have the hives if i stop.. keep me posted on how you are doing after being off a few months..thank you

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