Xolair stories...

My cons have decided that this is probably the next step in treatment for me now. I was just wondering if anybody on here has had it/is still on it?

If so...

Has it worked/not worked?

What side effects have you had?

and have you been able to reduce the meds you were on before because of it?

Any replies would be fab.

Thanks,

Emma x

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Hi Emma,

I was on xolair for a year. I felt it worked quite well for me. It took about 2 months before I felt some benefit from it. My cons decided to stop it after I had a series of severe attacks landing me in ITU/HDU. He also didn't think it was workinga s well as it had initially as I could not cut down my pred dose. I am going to discuss going back on it when I next see him.

The main side effects I got were headaches and tiredness. After my second dose I became unwell, felt really hot, shaky, lips tingling and tingling in my fingers. The docs were unsure if it was due to the Xolair or not. I agreed to continue and was ok with the tird dose, still got the headache and tiredness.

My peakflows improved whilst on it and overall felt much better was also getting more sleep on a night.

hope this helps

carolyn xx

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I'm waiting to hear if I have funding to try Xolair or not. My allergy cons feels it might benefit my chronic urticaria as well as asthma, in terms of urticaria it's the last shot before immunosuppressants. I'd be interested to hear peoples experiences too!

Lucy x

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I've had a really positive experience with Xolair but as was explained to me before I started it may not work for everybody. In fact it was very much a last ditch attempt which they didnt expect to work for me but it has. I can try and explain some of the ways it has helped me.... I'll put them in a list:

1) Nebbing - On a bad day before Xolair I was nebbing 4-6 times a day on a good day! Now I neb as and when needed. This ranges from 4 times a day with infection/ high pollen count to none at all!

2) Pred - I had to keep my dose stable for 16 weeks while on a trial. I could up it as usual during an exacerbation but i had a minimum maintenance dose of 20mg. Previously I was on 30-40mg fairly constantly, but I have spent far more time recently on 20mg. With exception of occasional stress/infection - induced exacerbations. I am now allowed to start reducing below 20mg for the first time since last May pretty much. I did have a disastrous attempt at reducing in Sept but we dont talk about that ;-).

3) Exercise - this has been interesting testing how these have improved with infections getting in the way. Yesterday I managed to do a 10 mile bike ride and some wall climbing with only a few splatty moments. I was out of breath just walking across campus at uni beforehand. On a bad day I am still limited, but on good days with the aid of a neb or two I can do things I couldnt even have considered before.

4) Sleep - possibly the best thing about it! I don't always sleep straight through but it happens more often than not. And as a result I am a far happier and less sleep deprived person.

5) Lung function - I have seen a considerable increase in FEV and FVC since starting Xolair and my peak flows have also improved and on a good week are now far more stable. Less totally random splats in the middle of seminars!

I dont get any real side effects apart from a headache the evening after I have the injection - I now just take painkillers pre-emptively and that seems to work!

If anyone has is given the chance to try this drug I would recommend they give it a go. I know it may not work for everyone, and I am certainly not advocating it as a miracle cure. It is a committment having the injections and as yet I have not been able to ""get rid of"" any medications and still feel a little like a walking pharmacy! But it has made a massive difference to me.

I hope this has been of some help to someone. I know that both of you know me but this is it summed up in a nutshell I guess. A rather large one. Feel free to PM me if you want to know anything else.

Em

xxxxxxxxxxxxxx

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Ohh and just thought you may be interested to know it has also improved my eczema and my hayfever as well!

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hi em

thanks for putting them questions on as you know we are both waiting to hear about xolair/

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*Fingers crossed*

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yeap got them crossed for us both

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I've been on it now for over a year. It's made an tremendous improvement. I was in and out of ITU all the time previously,,, I was there more than the full time staff! In the past year I've only been to visit them twice and didn't need ventilating either time.

I go every 2 weeks to the resp ward at the hospital and have my jab, there very good now and have it ready for me, a doc gives it (although most don't know how to give a sub cut injection) I wait half an hour and go back to work.

The only side effects are bruising where I've had the jab (bruise easily due to steroids) tiredness and headache but these usually sudside after a couple of days.

Pred was 30mg maintainance now 10mg!!

Best thing thats happened to me.

I hope it works for you, it doesn't work for everyone but it's worth a try

Good luck

Truly x

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My daughter is on xolair. She is 10. She has been taking it for a month now and although it is early days she seems to have had improvement since being on it. She does get sore from the injections and tired but is managing ok on them, she just has every other wednesday off school when she has the injections. She does still get really wheezy at times but since she started it she has only had two days off school, though she is bad at the moment, I can here her coughing as I type this!

Before starting it she would have to have around 4 nebs a night, now i don't have to give her any as such unless she is particually bad. She is using her ventolin much less during the day, she is still on 10mg of pred a day but i'm hoping that we may be able to lower this at some point in the future. She has spent most of her life in and out of hospital spending much of the time in HDU, I'm really pleased with the results that we have had so far and I hope that they will continue to get better. This was a last ditch attempt for her really as they are really worried that she is going to have a fatal attack, my only other options are chemo drugs and i really don't want to use these due to the side effects, hopefully she will continue to be ok on this and we won't need to go down that road.

Good luck with it all.

Mel

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Hi, At the moment xolair has been life changing for my son. He has been on 4 weekly injections since Oct 08 with no side effects at all only positives. He is nearly 14 and been on daily oral steriods and/or injections since he was 2, he hasnt needed any oral steriod for 3 mths. The biggest change for him though is he hasnt needed his sub cut bricanyl for 7 weeks now and he was on 10mg. This has had a massive impact for him being able to just up and go or have spur of moment sleep overs without worrying about syringes etc. His excercise tolerance is much improved and life is just generally great for him. Obviously he still gets wheezy or breathless at times but \i would say more like a 'normal' asthmatic not in the chaotic way he has been all his life. Living the rollercoaster we have with him it has taught me too be realistic so I am not expecting this dramatic change to stay forever but if it gives him a few mths of normality then thats great.

Rbh have said they havent had such a dramatic improvement in any other peadriatric case so it makes a lovely change for him to be the focus of positive news for a change!

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Julie,

I am so pleased Sean has had such a positive response to the Xolair. I have a friend who has 2 children who have both been given funding for it but as Jayden had little response she is a bit concerned about putting her boys through fortnightly injections. She has the added worry that they both have very high IgE levels/multiple allergies and her eldest son has recently had severe anaphylaxis which made him really ill and she is worried he might react to the xolair.

I will pass on the story of your success as I think hearing a positive side to it may help her feel a bit more at ease.

Thanks for sharing.

Take care

Nikki

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Thanks so much for taking the time to reply everyone!

I hopefully find out yay or neigh on the 20th, after hearing these stories it's made me feel a lot more positive towards xolair and a whole lot more optimistic too.

Em x