Newbie here, looking for some help with new meds - AZITHIOPRINE / XOLAIR

Hi there and hello to everyone!!

Just a bit about myself, I am a mum to 3 boys, 2 with Asthma.

We have had a bit of a difficult year and I am now finding it very hard to decide where to go with various treatments we are being offered.

One of my son's is 8 and has had a really rough year with a number of hdu admissions, not really bouncing back that well inbetween. He had a known allergy to nuts and eggs but has now developed a number of new allergies over the past 6 months. He keeps having allergic reactions with facial swelling and hives to food he used to be ok with and I am now worried everytime he eats anything!!! Even when he appears well to me he has low lung function and is wheezy.

He has tried most of the common meds but nothing so far is keeping his asthma under control. We have been asked to make a decision between trying either Azithioprine (sp) or Xolair. I am not keen on either of these and the hospital can't say if either will make a difference or not.

Does anyone have any experience of either of these meds, pros and cons to help me come to a decision. This is tearing me up inside as he is only little and I feel as though I am between a rock and hard place.

Thanks in advance for any help with this.

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Hi Jellyfish

Hi,

I'm sorry I do not have any experience of your problems but you seem not to be getting any reply to this appeal for advice. The only thing that comes to mind is that when I was desperate for some answers to my own Asthma problems, I rang the Asthma nurse on this site and she was wonderful. She gave me so much advice and reassurance. Why not give her a try. I expect she has a lot of experience to offer you. I don't know, off hand, what her telephone number is but it will be on the site somewhere. If you can't find it I'll search through my stuff to find it for you, so come back to me if you need to for it.

Good luck and best wishes with this distressing problem. My heart goes out to you. Little ones are so precious and you sound terribly worried. I hope you sort things out without too much difficulty.

:)) Louisa

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Hi Jellyfish

I'm an adult and have been on xolair since May this year. It has totally changed my life. Before xolair I spent 2-3 weeks every month in hospital. I was ventilated about every 2 months. I was on 40-60mg of pred and hourly nebs when I was well at home.

Now... my pred is down to 20-30mg, Ive not been admitted since June, although I probably should of been!

Although I still have severe brittle asthma with xolair I can cope a little better with it.

I've not had any real side effects from it, I attend the ward every 2 weeks for my 2 jabs (1 in each arm) then I hang about for an hour in case I have an anaphalactic reaction (which Ive never had) and then I go home. The jabs are painful as it's quiet thick and I've got bruises but this is nothing compaired to how ill I have been.

I'm not sure of the long term side effects but feel long term high dose steroids and endless episodes on ventilators have to be worse than any side effect xolair can give me.

Obviously it doesn't work for everyone but it could be worth considering.

I wish you well.

Truly x

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Xolaire

Hi

My name is Fen Bagias and I work in Asthma UK's Communications team. I'm not sure if you've heard yesterday's news, but NICE does not intend to approve Xolair for use on the NHS in England & Wales among 6-11 year olds.

We therefore need to hear from parents who feel their children's health has benefited significantly from the drug, to help us lobby NICE to change their decision.

I was wondering whether your son did go on to try Xolair, and whether it helped him?

Best wishes

Fen