XOLAIR

[Jamesmum]

Hi everyone, I do hope you are managing to stay well and safe. My son has CF and various other diseases in his lungs... He is a bit of an enigma and they really can't help with this dreadful breathlessness he has been experiencing for almost a year. We are looking at something called Xolair. Does anybody take this and is it helpful. I would be grateful to hear from anyone who has experience of it.

Many thanks xx

[Hidden]

Hi Jamesmum, I'm sorry I can't help you, if no one else answers who has experienced xolair maybe ring the nurses on the BLF helpline.

blf.org.uk/support-for-you/...

Best wishes to you and I hope your son gets some relief from Xolair.

[Jamesmum in reply to Hidden]

You are very kind thank you x

[Rustyy]

Hello, I'm on Xolair injections. I started maybe 5 years ago. I have severe asthma that is triggered by allergies, I had several attacks which required hospital treatment and over night stays. Since being on xolair I have had one attack (stress induced) and my quality of life has massively improved, for example I now run 3 times a week and training to run the Great North Run, a pipe dream before xolair.

For the first few sessions of the injections I was required to stay on the ward for 2-3 hours so that the nurses can look for any signs of anaphylaxis, which never happened. Due to the current circumstances, I have started self administering these injections at home. I never any side effects apart from some slight soreness around the injection site.

I hope this helps but please feel free to ask any questions

[Jamesmum in reply to Rustyy]

Hi there thank you so much for responding, and very positively too!! I am delighted that the mefication gives you a much better quality of life... Long may it continue.

Best wishes

Bretta x

[Jamesmum in reply to Rustyy]

I am just yst going to discus with my son James...he has, CF and other lung diseases but we are aware that CF patients are taking this medication.

It was our suggestion but the doctors say no... We are going to obtain the medication, privately if necessary as I do believe it will be a benefit to him

Thank you so much it is most helpful to know someone who has had a positive experience... I am so pleased for you xxx

[Rustyy in reply to Jamesmum]

I have yearly reviews with my chest physician where he assesses my health and whether the injections are making any difference. I think at the beginning it was after 6 months. I'm sure they will be able to do a check up and see if it's helping x

[Jamesmum in reply to Rustyy]

Thank you I really appreciate your taking the time to let us know what to expect.

B x