Xolair: Hi everyone, they have rung to... - Asthma Community ...

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Xolair

Joycies profile image
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Hi everyone, they have rung to tell me to go in for Xolair every 2 weeks.

How does everyone get along with this drug,would like to know some of the problems beforehand, if I can.

Thanks,

J

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Joycies profile image
Joycies
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7 Replies
EmmaF91 profile image
EmmaF91Community Ambassador

Hi

I was on it Jan through July this year. It helped calm things slightly but I still had issues (I have eosinophilic asthma as well as atopic tho so probs why 😅). Initially I had a headache the day of/following the injection but otherwise was fine. Then I started getting hives and (mild) angioedema (with a weird time pattern) - we eventually pinned it to the xolair so I got swapped to mepo.

Until the hives etc I didn’t have many complaints on it and I know people who have been on it for years with no issues! Good luck and I hope it’s the answer you’re looking for! X

Joycies profile image
Joycies in reply to EmmaF91

Hi Emma,

Thanks for taking the time to reply, I have eosinophilic asthma as well, and wanted to know what to expect. I’m afraid my doctor hasn’t explained what to expect, I don’t know anyone else who has received this treatment

So thank you very much,P

EmmaF91 profile image
EmmaF91Community Ambassador in reply to Joycies

Xolair is just a few needle injections usually into your arm. They can be pain free with the right nurse 😉 or can cause a mild pain/burning sensation on the actual injection (the stab didn’t hurt me ☺️). I had 3 each time (1x month). The number of stabs depends on blood levels of IgE and your weight. I had to carry an epipen with me cause there is a very small chance on anaphylaxis after (which is why you have to linger a while after the first few injections). I’ve never used it and as I said I had a hypersensitive reaction to it which calmed with topical cream, extra antihistamines and time (I’m not one to panic 😂)

Since I’ve swapped to mepo my asthma is a lot better however I have more side effects (which is hoping will calm down over time 🤞🏻). My asthma seemed to be more eosinophilic than atopic 😅

They should give you an intro pack at (but before) your first injection to explain what it’s doing and possible side effects etc. Good luck and hope it works for you.

Joycies profile image
Joycies in reply to EmmaF91

Hi Emma,

Thank you so much for writing, you gave me so much information it is a great help. I am 75 and find I am so behind new treatments at times.i have had a second opinion he has suggested Xolair he also prescribed unipyllin as well although the rest of my drugs were up to date. If you know anyone around my age taking it I would love to know what they think. Thank you again for answering me. J

Js706 profile image
Js706

I love xolair! 😁 I’ve been on it about 5 months and have 3 injections every 2 weeks.

I’ve had no side effects at all and most of the time don’t even notice the injections (although I’ve had so many failed cannulas and ABGs in hospital now that might be why 😂).

My centre gives it in the upper arm (normally a bit round the back so you can’t even see them doing it) and alternate the arm they use each time.

For the first few you have to hang around for a couple of hours after (take a good book!) as Emma said, to see how you do with it and there’s a small risk of allergic reaction (although my centre don’t make people carry epipens like some) and then once you’ve had the first few the wait time reduces - so I currently have to wait for half an hour afterwards 😊

TheOriginalSim profile image
TheOriginalSim

Hello,

I was on xolair for 3 years up until 3 months ago. I had a few side effects after 2 years - lethargic and nauseous feeling really. Sometimes it gives you achey limbs (I had mine in each of my limbs). They do hurt even with the right nurse but there are worse things to go through.

I had 4 every 2 weeks and trialed coming off it last November but got very, very ill, so I went back on in January. Having gone back on it I no longer had those side effects.

They had been wanting and waiting to swap me out for mepo and 3 months ago I did but I felt my asthma (severe allergic) was mxuh better controlled on the xolair.

I have another round of treatment next week so get to do tests to see if it actually has made any difference.

I hope it works out well for you and if it doesn't you find something that does. Xolair really gave me my life back.

angievere profile image
angievere

Hi Joyce’s, My son started Xolair 4 yrs ago and it turned his life around. He has 2 injections every 4 weeks. He never had any side effects except a bit tired after the injections initially and says the injections don’t hurt. He still gets wheezy with colds and is on maximum medication, but otherwise keeps well and hasn’t had a bad attack for several years.

Good luck and I hope Xolair works for you.

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