Severe asthma treatment

[Lotti_321-]

I’m not sure where to go from here! So I’m wondering if anyone else with severe/ complicated asthma might be able to provide any suggestions on what else I could try!

I’m on fostair 2 x 3times a day, qvar 800, xolair & fexodenadine, montelukast, carbocisteine. Last time I was tested I wasn’t eligible for the other mabs. I’m having repeated flares of my asthma & eczema . I respond to pred. Intermittently wheezes (not always), tight chested & cough. O2 doesn’t always drop & often told i can speak well despite symptoms. I’m having repeated flares despite the maintenance treatment, my hospital team are reviewing me remotely. I’m trying to find if there is anything that I could suggest to drs to try instead of the constant flip flopping . TIA!

[Wez1]

Hi, I have severe eosinophillic asthma. 6 months ago I started receiving a biological treatment that has made a huge difference, only one flare up in that time.Thankfully funding has been approved for me to continue.

Might be worth asking about biological treatments for yourself?

[EmmaF91 Community Ambassador in reply to Wez1]

She’s already on a bio (xolair) and because there’s no evidence of eosinophilic asthma she’s not eligible for the other bios. (MAB = bios 😉)

[Poobah]

Have you discussed having a LAMA inhaler, like Spiriva or Eklira Genuair? They are an add on inhaler and are usually prescribed for difficult asthma. Otherwise MABS are the next step.

[EmmaF91 Community Ambassador in reply to Poobah]

She’s already on a MAB (xolair) and isn’t eligible for the other options which rely on eosinophils rather than IgE 😉

[Poobah in reply to EmmaF91]

Thank you Emma. I learn something every day. 😁

[Mark-f]

Hi , Im severe asthmatic and been on pred at high dosages for many years ... I was on xolair for 12 months , unfortunately it wasn’t for me , I then did another 18 months on mepolizomab this also didn’t work , I’m now benralizumab and it seems to be working well , I’m still on pred but at 5mg daily ... don’t give up hope it just takes time to get on the rite biological meds ...

[Lotti_321- in reply to Mark-f]

I’ve been on xolair for over 12 months. I’ve just not got any eos which make me eligible for the others! I’ll suggest some of what people have said & hopefully they can do something!

[Starstream20]

Hi, I have recently added Spiriva and and been a bit better with that.Have dropped the Montelukast and carbocisteine as they didnt seem to be doing anything.

So now just Fostair am and pm and 2 puffs of Spiriva, still have flares which calm with prednisolone but they are further apart.

Waiting to have tests with the difficult asthma clinic now but not sure when this will be.

Hope you get sorted soon 😀

[EmmaF91 Community Ambassador]

Hi

Med wise have you tried a LAMA like spiriva? That’s often a good one to try. There’s also theophylline/aminophylline tablets - it’s a marmite drug, and a pain (hence why docs often don’t like using it) but for those it works for it can be really helpful.

Otherwise have you had any non-medical intervention? Some people really benefit from seeing physio so that may be an idea?

It’s annoying that they haven’t come out with any more allergic MABs. Xolair never really worked for me - it helped but I still got monthly asthma issues leading to hosp and eczema and urticaria/angiodema still happened. I’m lucky in that I also had the eos to try the other bios which helped the asthma 😅

Hope this helps

[Lotti_321- in reply to EmmaF91]

I can definitely suggest it! I know they discussed previously kenalog injections. Just waiting to hear back from my consultant. I’ve seen a physio and they said there’s nothing they can do as no sign of bpd etc.

I’m finding I’m having issues like every 6 weeks & seeing a flare up in my eczema. The last lot of bloods I had done I had no eos but that was whilst on steroids! Thank you it is really helpful, I just want to be armed with suggestions so they don’t fob me off

[EmmaF91 Community Ambassador in reply to Lotti_321-]

Ugh. I hate the steroid v eos issue. Steroids can mask eos. I’m not sure if you’re on maintenance steroids or not, but long term they are renowned for hiding them. Have a friend who always got 0, then whilst she was intubated they did a steroid wean to see (She NEEDED MABs and they suspected they were just hiding) - scored 3.4 when she only needed 0.3 for mepo 🤦‍♀️🤦‍♀️. It took months until they decided to do this...

Ah. Glad physio has signed you off. I’m currently on kenalog and have found that it helps (I think I absorb pred weirdly - I can take 40 and be accused of not taking - even when witnessed 🤦‍♀️).

[Lotti_321- in reply to EmmaF91]

Not on maintenance...yet! That is something else being discussed but we’re trying to avoid it unless absolutely need to! I’m on pred every 6 weeks to 8 weeks as symptoms rear up again about 3 weeks after stopping them. So I don’t think there is enough time between for my blood to settle to their normal.

[Shazgrav17]

Sounds like me a while ago my consultant gave me uniphyllin which does help but i also habe the in asthma injections biological been on them over a year now its a give it a try see what happens with me i think they were at a loss x

[lucia_m]

Like others here I found spiriva quite helpful when it was added for me. I still get flare ups/need pred courses but can go for longer in between episodes since starting spiriva about 8 months ago.

I also have loads of problems with eczema despite taking the higher dose fexafenadine, which I’m taking for rhinitis/allergic asthma but would expect to help with eczema too. I can’t seem to get a handle on it and have to use very strong topical steroids every few days as it keeps coming back and doesn’t respond to the weaker creams. This makes me wonder about my eosinophil levels as well - I’m still waiting to have those tests though.