Omalizumab and asthma worsening

Hi I've been on xolair 2 years 4 injections every 2 weeks. For several weeks I've had worsening of my asthma symtoms which they class as unstable and the respiratory nurse who gives my injections in the hospital doesn't seem to agree. I have never coughed and it's keeping me awake, blood tests normal but symbicort 400 and about 9 puffs Ventolin day seem normal. I've tried every inhaler on the market and recently seebri and feel I'm not sure where to go next. The respiratory consultant is not great in the local area but a good one in Middlesbrough. I take Montelukast at night and have IgE over 1,800. No allergens in the house and they did find sensitive to Aspergillus. I'm a registered mental nurse who is now unable to work and desperate for any advice on this persistent cough. I've bought Dihydrocodeine to ease the coughing as I have joint problems in my knees. Any one like me???

10 Replies

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  • No one on Omalizumab with severe unstable asthma then?

    Started rescue pack steroids today but don't get much relief from them these days, due to being on and off them most of my life.

  • Hi Matti1, sorry you've got no replies! Why don't you try on the British Lung Foundation site on Healthunlocked and see if you have any success there.

    Bronagh🙂

  • Several years ago I was on omalizumab for over a year. But I made the decision to come off it (with the hospital approval) because it made no improvement to my breathing issues and the chronic brittle asthma was still chronic and brittle. I felt no different after I stopped either. I was so disappointed because Id built it up in my mind that this was the miracle cure Id been waiting for. still waiting .... in the process of being offered a 'trial' through our hospital. With my luck I'll get the placebo haha .

    I neither get much relief from steroid - have been told I'm steroid resistant - though do occasionally use them out of desperation. The worst thing about steroids is I wake up at 4 am on the dot every morning from the day I take them.

    Not sure if this reply is any help or not. But nice to know its not just me.

  • Sorry to hear Xolair didn't help Kimmy. xx

  • Thanks. At the time it was a huge deal. So glad though it is working for your son. I had heard it was a very successful drug.

  • Thanks Kimmy. Successful for some it seems... xx

  • Exactly like me reading about myself except 2 years on xolair still very unstable, steroids not working these days. Thanks

  • Hi Matti, Sorry to hear you have been so unwell. Did your asthma improve when you started the injections? My student son has Xolair injections and his asthma improved dramatically. He still has bouts of asthma and takes steroids, but (like me) he is slightly steroid resistant.

    Have you tried Pholcodine for your cough? GP recommended that for my son, especially at night when he had a terrible cough. It really helped him. You can buy it over the counter at pharmacies.

    Hope things improve for you.

  • No improvement in my asthma had it done childhood, now 54

  • Have you tried Salt Cave therapy. It has worked wonders for my asthma. I still need Inhalers but the Salt therapy has made me much better. I know there are some Salt Caves in the UK but not sure how close they are to you.

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