Xolair

[floating_]

Is anyone here on it? How do you find it? My allergist at St. Thomas' has suggested it for me and I'm looking to understand how people find it in terms of their MCAS/Mast Cell disease? Thanks!

[Jess-UKMasto Partner]

Hi floating, I hope some people who've had Xolair (also known as omalizumab) will share their experiences. As it is quite difficult to get prescribed in the UK you may find that there aren't a huge number of people who can share here (since we're mostly UK). Its use is a bit more widespread in the US. I have heard some people report a very good response from it, though sometimes not for a good number of months, so I think they would say to stick with it for a good while if you tolerate it well. (I saw a patient post in a Facebook group yesterday that it was at 6 months that it started working!) I have also seen patients report occasionally that they have a reaction to it, so it is usually given in a setting where you'll be observed for awhile. I hope it's a good help to you! And it would be great if you could let people here know how you get on so they can learn from you.

[floating_ in reply to Jess-UKMasto]

Hey!

Yeah, I'm in the UK too and there's only one thread here (aside from mine) about Xolair!

Thank you for the heads up regarding how long it may take to work. My Allergist did mention a different test that can only be done at St. Thomas', called the Basophil Histamine Release Assay. Apparently if you're positive there, then you may be on it longer. I do also have asthma so will be telling my respiratory consultant about it as it's also used in asthma.

At the moment she's told me to keep a diary specifically of my hives and take some photos, and then we will go from there in terms of if she puts me forward as a candidate for Xolair. If I am then I'll share my experience here for sure!

[Jess-UKMasto Partner in reply to floating_]

Thanks for sharing about the test as one of the criteria for using it longer. It is approved for hives and asthma and so only MCAS folks who have those symptoms/diagnoses are likely to get access to it. That's good you can keep track of your hives as evidence. Thanks for offering to share your experience!

[floating_ in reply to Jess-UKMasto]

Yeah, it's unfortunate that the criteria isn't wider in the UK!

The test is a simple blood test, I did it after my appointment! So will know about the basophil thing relatively soon.

[Jess-UKMasto Partner in reply to floating_]

Expanding it would require trials to show the efficacy and then that it's cost effective. Not for the companies that are faint of heart... It's expensive, so it is rationed : (.

[floating_ in reply to Jess-UKMasto]

That's really unfortunate.

[Feks]

Hi :0) I had xolair. Like Jess said, it took a few months to work. But then it did. However my treatment (also at guys) required a break every six months to prove that you still need it. You have to allow hives (and everything else with Mcas…) to come back then they give it for six months again. These breaks played havoc with my Mcas as each time I would build up a reaction to it. In the end these reactions outweighed the benefit for me. But I have heard of others for who it was more tolerable. You have to score a certain amount on the hives score to get it… good luck. I hope it helps you :0) abi

[floating_ in reply to Feks]

Ohh. How is the MCAS for you nowadays? Sorry to hear that the breaks ended up being intolerable. But I'm glad you got some relief!