Teenager started xolair

My daughter aged 15 started Xolair last week, 3 jabs every 2 weeks. Just wondered what people's experiences were of Xolair?

She has had 18months of 5-6 weekly admissions with very brittle asthma, needing Aminophillyn and Cpap each time, which has turned her life and ours upside down so we are desperately hoping Xolair helps her.

She found the jabs very painful (first time), and has headache and aches in limbs, It seems to have knocked her for six.

dOes anyone else find they feel unwell after the jabs? We are hoping this will settle down as her body gets used to it. Does any one have any positive stories about Xolair to keep our spirits up?! I think we found the whole process of the jabs has hit us a lot harder than we expected. will it get easier?

Thanks in advance

9 Replies

  • Hi Emma, My son (now 18) started Xolair injections 17months ago, he has 2 injections every 4 weeks. They made a huge difference, he went from brittle asthma on maximum treatment to able to attend school regularly and even took up some sport. It was like a miracle to us. He didnt find the injections particularly painful and had no side effects at all.

    I think everyone reacts differently and sometimes it works and sometimes it doesnt. It took a few months before we noticed a difference so bear with it.

    My son's asthma is still low level troublesome and he still takes maximum medication (including Aminophylline) but has dropped the steroids. December was a bad month and he was on steroids again, but still managed to keep going. He's at university now and managing well.

    Good luck with your daughter - I really hope Xolair works for her.

  • Wow thank you Angie, I have just read her your message.

    I am so happy to hear it's worked for your son and he is back into living a fuller life.

    We really need to keep positive and be patient I guess. It's very encouraging to hear that. Bella did find the jabs painful (it will be 3 every other week) but now we have done it once we will be better prepared. It seems that people say it's a gradual improvement over a long time. Quality of life at the moment is really quite poor, with 5-6 weekly admissions on Aminophillyn and CPAP and she is on permanent steroids. cOnsultant is hoping to reduce steroids through Xolair.

    Thanks for taking time to reply, I have read her your reply 😀

  • I'm not a teenager, but I've been on Xolair for 3 and a half years now. It does take three months to kick in and start having an effect, but once it kicked it it made an enormous change to my quality of life.

    I don't find the jabs painful at all; it's a very short needle and is just a sub-cutaneous jab, not intramuscular like the flu jab, which is much more painful. To be honest I think a lot of people's perception of pain is in their heads, especially if they're already scared of needles. Maybe your daughter could try some positive thinking before her next round? Thinking of the improvement it'll make long-term rather than the short-term pain might help.

    I'm also pleased to report that I've had no side-effects at all since starting.

    Good luck to your daughter, I hope it works out for her.

  • Thank you for replying! It's really interesting to hear how other people have been on Xolair. She had the first dose on weds, although I think that besides dealing with the first Xolair jab, she is also on a slow slide downhill with an exacerbation as she is starting with the usual cough and rib pain, wheeze that she usually gets. She is great with needles, she must have had around 60 canulas / blood test in the last few years but she found the third jab (leg) painful. I think she is also worrying about the possibility of a reaction, which is a lot for a 15 year old to carry around with them in their mind! It was made very clear about the risk of anaphalyxis and I wonder if is has added to the stress (though she tells me not!).

    It's great that yours has had such a great impact on your quality life. Really hoping that is the case for us but I guess we need to keep patient and see.

    Thank you, it's very helpful to hear.

  • Hi Emma, me again! It's very early days for your daughter. As has been mentioned, it took a few months for the effect to really kick in. For us, it gave our son a new lease of life, emotionally as well. Your daughter must miss a lot of school as well, which is really hard. 40% attendance in Yr 8 and hassle from the school. Fortunately my son was a big reader, so read and studied on his own when he was off school. I've got tips for dealing with school if they are giving you hassle. For myself, I was partly home educated because of my severe asthma, but the authorities wouldn't allow it for my son.

    Anyway, we have come through it all and I hope/believe your daughter will too. Best wishes to her and tell her she is not alone.

    PS Feel free to post anytime. I don't post much on here but always look out for Xolair posts!

  • Angie that is so kind of you. Yes it sounds like a familiar scenario, her schooling has suffered, she missed a whole term of school. She is managing (just!) but still misses chunks of time due to the frequent admissions, and even when she is in between exacerbations she is not really well.

    On so much medication which is frightening, her school have dragged their heels but are now getting on board to offer more support (year 10).

    Like your son, it's has hit her hard emotionally. We are a positive family that try to keep going and work together and support her and eachother as best we can, but the last few days she has been very quiet and I know she is struggling with coping. I have just asked the school if a counsellor can give her some time, as I think it would help her to offload to someone who is outside the situation. I think teens maybe bottle it up as they don't want to worry their mums any further!

    We're lucky that our consultant locally is amazing, and we have another consultant at a specialist hospital (Southampton) who has started the process of Xolair.

    I just want her to be reassured that we won't stop trying to improve her life, and that how she is now isn't how the rest of her life will be. She is very mature for her age and takes full control of her health, I am so proud of her but most adults would struggle to cope with what she does!

    It gives me great hope to read about your son. You must have been through some very tough times.

    Thank you, it's has helped me more than I can express to know we are not alone.

  • I've recently started the injections and I do get side effects of aching and tiredness. I am also brittle and just started to attend a specialist centre. Hopefully it will help her to reduce steroid use with has long term side effects. I have in the past been on maintenance steroids over several years and then short courses once I managed to get medications working for me. Unfortunately my steroid use has increased within the past few years which is why I am on xolair. Good Luck.

  • Spookylou, thank you. Lots of people saying it has helped them so I really hope it starts to work for you and us.

    She had many short courses of steroids when younger, but last 2 years lots of high courses, and now she is supposed to be on a maintenance dose but we never manage to get that low as exacerbations are so frequent that it's constantly stepped up.

    Sorry to hear your asthma is so troublesome, everything crossed for Xolair to help.

  • No worries I am use to the cycles of my asthma just a bit annoying at times, hopefully it will work for both of us. When I was younger I was like your daughter in using steroids could only get down so much then bad do and upped again. Thankfully I seemed to finally get meds working and just then short courses. I am use to the meds and limitations it brings. When I went through the really bad years I saw clinical Psychology in my early 20's, that helped in dealing with my condition, acceptance and control and my frustrations around it. I think the school counsellor is a good idea if she is willing also sometimes the specialist hospitals have support group courses, as I have been invited to one, but as I work part time it doesn't fit with hours yet but hopefully the next one might. Take care and good luck.

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