Biologics: Hi - following on from my... - Asthma Community ...

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Biologics

LottieB36 profile image
13 Replies

Hi - following on from my previous posts, has anyone been rejected for biologics due to their inhaled steroid dose being high? I have Seretide 250mcg x2 puffs twice daily and pulmicort nebs 2mg twice daily. They’re saying the high doses of inhaled steroids are the cause of my infections, but I’m colonised with pseudomonas and have nebulised antibiotics to keep under control. They finally agree that I do have asthma but an infective phenotype rather than allergy driven (although they know I have difficulty during spring/summer and autumn - latest eosinophil count is 300 but apparently they will only consider other biologics if they can demonstrate this 3 times - I’m usually on prednisolone from April through to September and again if I get a chest infection - surely they can take this into consideration. Thanks 😊

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LottieB36
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Lysistrata profile image
LysistrataAdministratorCommunity Ambassador

huh, what?? Is this your current team again? Have they even read the criteria or are they just making stuff up...as I'm sure you know already, you only need ONE eos count of 300 to qualify for most of them and for tezepelumab you don't even need it once.

And I've never heard of inhaled steroids being an issue if they're too high. I would have thought it would only be a no if you were on low dose and they wanted to see if increasing the dose helped first.

I can't help thinking that they just don't want to give you biologics even though you've met the criteria - not sure why but there's always another thing and most of it isn't required by NICE, as you know. I know someone else with a combination of infection-driven and allergic asthma who was on Xolair and is now on tezepelumab.

Based on your previous posts I would give up on these guys, write your politely worded letter addressing why they keep inventing more criteria, and go to Wythenshawe who hopefully will just use the existing criteria.

LottieB36 profile image
LottieB36 in reply toLysistrata

Hi, thanks for replying 😊 They’re unbelievable - I said I thought the point of biologics was to reduce steroids whether inhaled or oral! Apparently the high inhaled steroids are the cause of my infections and need to be reduced before I can be put forward again - they haven’t got a clue how many I’ve had this year and seem to forget I’m colonised with pseudomonas 🙈. They didn’t put me forward for the others because they’ve decided my allergies don’t affect my asthma 🙈. I’ve got two letters drafted for them, one is polite and the other not so polite! I spoke to them today and said I’ve asked my GP to refer me to Wythenshaw

Itswonderful profile image
Itswonderful in reply toLysistrata

Hi Lysistrata. Please can you tell me about Wythenshaw?

Lysistrata profile image
LysistrataAdministratorCommunity Ambassador in reply toItswonderful

Hi, it's a Manchester hospital offering a specialist severe asthma service:mft.nhs.uk/wythenshawe/serv...

Itswonderful profile image
Itswonderful in reply toLysistrata

Thank you. Looks good!

LottieB36 profile image
LottieB36 in reply toLysistrata

Just thought I'd let you know that after a battle, they finally agreed my diagnosis - Type 2 high allergic/Neutrophillic Asthma and I was approved for biologics and have had 2 injections of Tezepelumab, and so far am managing to avoid steroids! My referral to Wythenshawe was rejected on the grounds that they don't feel they can add anything further to my care and that there is a high demand for their services at the moment - not sure where that stands on freedom to choose your care etc though.

Lysistrata profile image
LysistrataAdministratorCommunity Ambassador in reply toLottieB36

HI Lottie - that's great news, and thanks for updating! So glad you finally got there after all the obstacles and sounds promising so far. I've heard great things about this biologic so hope it works well for you.

Very frustrating about Wythenshawe but at least your current one saw sense. Otherwise I'd have been tempted to reply to Wythenshawe that what they could add to my care was the ability to read guidelines properly, and not add pointless obstacles to providing appropriate care.

LottieB36 profile image
LottieB36 in reply toLysistrata

Still trying for Wythenshawe as I have no trust with current team! One of my friends was asked to do a mannitol challenge after having her biologic, instead of normal spirometry to see what her response has been like! They're still obsessed with eosinophills still

Lysistrata profile image
LysistrataAdministratorCommunity Ambassador in reply toLottieB36

Ugh what??? That just seems unnecessary! I could really do with less of the eosinophil obsession. It's why I haven't tried to move from my tertiary centre - it feels as though it's everywhere and at least my current team and I have an agreement.

martin_1972 profile image
martin_1972

Hi Lottie,

There is a new biologic which does not require the same strict criteria which i was changed to and seems to be working better than all the others i have had before the current biologic i could never get below 15mg of prednisolone a day without being hospitalised and it also means i can do it at home due to it being an injection rather than a 4 weekly IV.

The new biological i am on now is Tezepelumab and below is the criteria

Tezepelumab as an add-on maintenance treatment is recommended as

an option for severe asthma in people 12 years and over, when treatment

with high-dose inhaled corticosteroids plus another maintenance

treatment has not worked well enough. It is recommended only if people:

• have had 3 or more exacerbations in the previous year, or

• are having maintenance oral corticosteroids.

LottieB36 profile image
LottieB36 in reply tomartin_1972

Hi - this is the one I’ve been refused! I’m also eligible for x2 others, possibly 3, but haven’t been put forward for them - because my eosinophil count has only been recorded as 300 once - they’re saying must be 3 times even though NICE guidance doesn’t state this. They keep saying my FeNO is normal and don’t seem to understand that that’s only relevant in eosinophilic asthma and steroids suppress this anyway as they do eosinophil counts. As Lysistrata has said, they don’t seem to want to give me biologics but don’t know why - they always add additional criteria that isn’t required by NICE

Nanto4 profile image
Nanto4

I was seen in Dec at a london nhs hospital ,accepted 2 days later and had my 1st injection of Benralizumb yesterday because i am so dependant on high dose inhalers .I hope something is sorted for you very soon .

LottieB36 profile image
LottieB36 in reply toNanto4

Thank you

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