Xolair off the NHS?

[runcyclexcski]

Hi all --

I am new to this forum. I come from the US where I was taking Xolair in 2007-2012. After coming to the UK, I felt OK for 6 years , and then got really sick again with allergic asthma. Can't work at the moment, on oral prednisolone full time. Been trying to get to a specialist for a year now to get back on Xolair, with no luck so far (although they now have all the tests in). My hopes for the NHS are at all-time low: it took them 6 months just to schedule a spirometry test (I have my own spirometer at home).

I have heard that there might be a way to get on Xolair shots privately a cost of £1,100 per months was mentioned. This is costly, but it's still 2x cheaper than in the US (and 2x cheaper than the rent I was paying in San Fran, CA).

Has anyone heard where Xolair might be available with direct pay. I would rather pay £1,100 a month and go back to work than stay at sick at home for months/ years.

[PeakyBlinder50]

I don't know your personal circumstances. But I had to go Private. I'm not saying this is the alternative for everyone and I'm not being negative about the NHS. But my asthma wasn't properly diagnosed until I went Private and I was a mess is all I can describe it on the NHS. My NHS surgery gave me a brown/blue inhaler after a chest infection and they then said when you feel better you can stop. So I stopped I don't remember much about that night but I ended up in A&E with a full blown asthma attack. Two week in hospital then I was discharged I was unconscious when I arrived and I was just living with uncontrollable asthma diagnosed 3 years ago. I went Private they did a blood test and I was diagnosed with non allergic eosinophilic asthma with non allergic rhinitis my meds were changed and I can now walk to the end of the road and have a semi normal life. The NHS surgery doesn't even check my asthma I was let down by them. I am now under the care of Respiratory Specialist. With COVID you are going to be waiting even longer so unless you are willing to wait.

[runcyclexcski in reply to PeakyBlinder50]

Many thanks for your response. I have the same impression about the private vs NHS. If one already has a diagnosis and needs maintenance, the NHS is great. Ditto if you have a defined, clear-cut issue (like a broken hip) with a standard action path.

Anything that requires "detective work" is difficult for the NHS; at least I know enough about asthma and biochemistry to ask them specific questions. My elevated IgE and Eos-s got properly diagnosed only when I went to a private consultant. The consultant also happens to be on the NHS part-time, so he suggested that I get xolair through the NHS.

My issue is that my baseline FEV in spirometry is 150% of predicted for my age and height. I happen to be a former nordic ski racer, cyclists and marathoner, and I was -- luckily or not -- born with higher than normal lung capacity. When I get sick, my FEV falls to 100% of the predicted, which, with my lungs, is a 30% reduction. In the USA, they took spirometry every week (unlike in the NHS where it takes 6 months to do one test) for a year, and proved the variability to justify Xolair. My consultant here in the UK is having concerns that my lung function may not be low enough to convince the NHS, despite the 150% baseline.

[hilary39]

So sorry to hear you're so miserable. I am in France now but I am American and tried for years and years to get on Xolair in the states to no avail in spite of being on pred frequently. I was able to get on it asap in France and have been so grateful for the health system here. I don't know much about the NHS but it sounds like if you can see a private provider and go through that network perhaps you could get on it sooner.

In the meantime is there a way to tackle any of the allergens causing you distress? Is it pollen or ragweed related? Animal dander? Dust?

[ccccc in reply to hilary39]

Hi

I sympathise, as for years I was in a similar position of taking courses of steroids and waiting to be accepted for Xolair. The criteria that NICE (which is the standard that the NHS uses in terms of deciding drug efficacy and granting use) is here if you want to look:

nice.org.uk/guidance/ta278

I know from what I was told by various consultants that your FEV1 has to be below 80% as well as being a regular oral steroid user. If you can find out your FEV1 from a spirometry that may help your case. Mine was 84% for years until one day I blew 75% and that clinched it! I know the NHS is beginning to do these again, but you may have to pay privately to get one sooner.

As you know Xolair is a very expensive medication which is why it's so restricted on the NHS but from my own experience I think it also depends on how positive about Xolair your respiratory consultant is (some are less sold on it than others.) Many GPs are unfamiliar with it. I had to try three different hospitals before I was accepted for it and the various attitudes ranged from "this is not the panacea we thought it would be" to "this is good medicine that helps over 80% of patients".

Before this I did look up private clinics and found the London Allergy Clinic, I didn't go any further with the request but it might be worth contacting them. The NHS has a lot of positive things about it but they tend to focus on drug cost rather than other cost savings such as you getting well/being able to go back to work/not visiting the GP so much etc!

[runcyclexcski in reply to hilary39]

Good to hear about France, and that there is proper healthcare (and hope) elsewhere. Might be time to look for a job outside of the UK... just need to get better first and wrap up my work first.

Regarding allergen control: during exacerbations, I stand 24-7 in a fully enclosed, positively pressured tent into which I blow HEPA.charcoal filtered air. No mattresses or pillows, or cotton inside, just an inflatable camping pad (plastic), an air-proof camping sack for a pillow, a chair, and a laptop. My wife brings me food, and I wear a P3/charcoal respirator whenever I come out for bathroom breaks.

I am currently on week 3 inside my HEPA-filtered tent since my hospital visit. The hospital made asthma worse, since hospital engineers in the UK do not seem to be familiar with the concept of ventilation/air exchanges, they use bleach everywhere, and their diesel ambulances idle right next to the cracked window of the ward (for "fresh air" I suppose). This is a respiratory hospital, I might add, so one would think they should be conscious of the air quality.

[hilary39 in reply to runcyclexcski]

Very interesting to hear about your experience with Xolair in the UK. I hope you can get back on it soon!! Keep us posted