Getting somewhere...Xolair soon?!

[MrsCMK]

Today I saw my specialist for the first time since being referred by my consultant and I can safely say that the appointment was a success! The specialist was lovely, really understanding and there was no hesitation in her recommending that she make a case for me to start Xolair! Despite me constantly having to justify my lack of wheeze, she said there’s no questioning that my asthma symptoms are an allergic response.

She did explain that she has to further justify my need and that I’ll have to do some breathing tests which I should receive an appointment for in a few weeks (hopefully). I am slightly dubious though as previous tests of such have come back fine (and even in the depths of a flare, my peak flow tends to hover around 70%). She wants me to do them whilst in a flare but I’ve just gotten over a (really) bad one, so knowing my luck they’ll come back inconclusive again.

Has anyone gotten close to having biological treatment and then denied it? I’m scared to get excited just yet.

[EmmaF91 Community Ambassador]

Hi

Usually with Xolair you need to demonstrate a high IgE count and be diagnosed with severe asthma.

Personally I had issues getting it cause my local were 100% sure was eligible (severe asthma diagnosed with history and lots of LFT plus high IgE/eosins) but when I went to spec hosp I randomly was Ab Fab asthma wise (for first time in 4 months and after basically 18 months of issues) so couldn’t prove the severe asthma with LFT 🙄. Luckily they saw me 2 months later really ill and then I got prescribed xolair.

Hope that helps and I hope you get one the right regime for you!

[MrsCMK in reply to EmmaF91]

(Un)luckyfor me, my IgE’s range from 1000-1300, so I tick that box but it’s the breathing tests that’ll be the tough one for me. I was in a horrendous state this time last week wishing I could rewind time back to when I was well but now I wish I was still like it so that I can prove myself for Xolair- the things we wish for, eh? Haha!

I won’t get my hopes up just yet but I’ll hope for the best because they’ve recognised that I’m suffering and agree that throwing pred at me is unacceptable. That recognition is often half the battle so I feel that today was a little win 🏆

[Hannah125 in reply to EmmaF91]

So, Xolair is for those who have very high IgE levels ? I can't believe that the last specialist I saw told me that he couldn't give me Xolair because I had a high IgE count! Instead he said he could eventually give me Nucala or Fasenra. When I asked him if getting these injections would mean I wouldn't have to take preventer anymore he said yes but only for a few months. But I read that injections were only add on drugs and that you're supposed to keep using steroids! And injections like Nucala seem to be for those who have eosinophilic asthma (which I have no idea if it's my case) and he was ready to let me try them on the spot whithout checking if I actually really needed them.

So Xolair can be used if you have high IgE count ?

Thanks!

[Js706 in reply to Hannah125]

Hi Hannah,

Yep, xolair is for those with a raised IgE level. I’m not sure what your doctor was talking about to be honest... 😅 the only thing I can think of is that the dose has to be worked out based on total IgE and weight - so it is possible to have too high an IgE count for it.

And you’re right in your reading that the injections are considered as “add ons”, so people might be able to reduce their normal preventer therapies (I know of some people who have been able to stop oral theophylline while on biologicals for example) but should never completely replace it.

I imagine it varies slightly from country to country but normally for xolair in the UK you need:

-A raised total IgE count

-Positive allergy tests to a year round allergen (although I’m sure you’ve said you have a positive dust mite allergy, so that counts there)

-Reduced spirometry (Although as someone else has mentioned on here, other tests like a mannitol/methacholine challenge might be able to be used to make a case if other lung function tests have been normal)

-A certain number of exacerbation requiring oral steroids (when I started my xolair trial my centre required you to have had 4 courses of oral steroids in the last year I think)

Hope that helps let me know if you have any other xolair questions I can try to answer - I had to fight to get my trial of it so did TONS of reading about it 😂

[MrsCMK in reply to Hannah125]

It seems like getting a great specialist/consultant/GP/asthma nurse really is a lottery. So sorry to hear that you’re not getting the answers and treatment that you need. I have my fingers crossed for you!

[Js706]

I think you also need documented allergy to a perennial allergen (year round, like dust mites or pet dander). I know you’ve got a lot of allergy issues so probably have this already but just in case you don’t yet they might need to order a batch load of allergy tests!

[MrsCMK in reply to Js706]

Ahh, yes I have this plus more- woohoo! When I was there I did ask what would happen if the tests didn’t come back as per guidelines and she said I’ve already got enough of a case for her to argue for something similar (but she didn’t elaborate). At least I know that a “no” is not quite the end. Fingers crossed!

[Js706 in reply to MrsCMK]

I assumed you would! 😂 To be honest I would imagine the proven allergy side is the one they wouldn’t shift on and lung function is the one they can be more flexible on as they can do other tests like challenge tests or try to make a case through symptoms/pred courses etc

[MrsCMK in reply to Js706]

Of course I passed the allergy bit 😉😂 But yes, that makes sense with them being a little flexible on lung function

[Mogget]

I have everything crossed for you! I’ve now definitely been approved for Xolair and am awaiting an appt date for the first jab...

I have good lung function on lung function test (110%) and my FeNO is fine too. But I reacted to a mannitol challenge test so that strengthened my case along with high IgE, needing to use my reliever inhaler pretty much every day and having an impacted quality of life despite being maxed out on preventative meds. I think I’ve been fortunate with my specialist too as he made a good case and fought for me.

So perhaps you could ask for mannitol challenge if you’ve not had it and other tests come back fine?

[MrsCMK in reply to Mogget]

That’s such fantastic news- congrats! It’s good to hear that there are some options.

I’ve never had the mannitol test mentioned in an appointment but I’ll definitely ask if need be. Thank you 👍

[Superp]

I'm not sure about now but when I started this treatment I need three AE walk ins

[MrsCMK in reply to Superp]

Oh wow, that seems such extreme criteria. I was told yesterday that the criteria is far leaner than it used to be (despite it still being pretty tight now), so hopefully it can only get easier for people to access in the future ☺️

[EmmaF91 Community Ambassador in reply to MrsCMK]

In 2018 (when I tried it) the criteria for xolair was definitely what Js706 states (maybe a difference in number of steroid courses.... think I needed 5 but not sure as I had had so many rounds I was basically on it as maintenance so didn’t listen to that one 😅). I’m pretty sure Js706 had her trial this year so guessing that’s the current criteria. 😅

[Js706 in reply to EmmaF91]

My trial was July 2018 😅 but just looked it up and it hasn’t changed. NICE have the criteria as at least 4 oral steroid courses in people with confirmed severe persistent allergic (IgE mediated) asthma.

So I guess they’re mainly concerned about setting the steroid limit and then it’s down to individual trusts as to how they show allergies/severe asthma - although they all seem to go for similar stuff!

And they also say it has to be an add on to already optimised standard therapy (ie more than just a preventer inhaler! But most people going to centres that can prescribe xolair would already have tried a lot!)