Severe Eosinophilic Asthma

[Kristicats]

Hi does anyone on here suffer from Severe Eosinophilic Asthma?

My husband has been very incapacitated by this since March 2020 which came on suddenly and has not improved since then despite continuous steroids, inhalers and trying the latest injections. He’s had to pack up his business and still cannot walk 10 yards without breathlessness . He’s even breathless in the middle of the night and after eating/ drinking! ( despite taking gird meds) His life is more or less non existent now to say he did such a physical job all his life prior to 2020.

Covid or not he can’t get any answers or suitable treatment/ relief from this severe condition. He takes Spiriva , Fostair , salbutamol inhalers. Prednisolone and had the biologic injections for 1 year and still the same as when it started. Numerous ct scans and blood tests .

[sassy59]

So sorry to hear of your husbands struggles. It must be so difficult for you both. I have no knowledge of SEA but hope some help can be found for him.

Thinking of you both. Carole xxxx❤️

[Hidden]

I'm going to ask you two probably silly questions.Does your husband have a specialist in difficult asthma or is he under the care of the general respiratory clinic or GP. If he does not have a specialised consultant, find one most likely at a big teaching hospital, take the name to your GP and insist on a referral.

Has your husband had his heart looked at. Not just an ecg but at least an echocardiogram. In 2010 I suddenly had these symptoms which worsened. The medics kept blaming my bronchiectasis until a cardiologist discovered that I had developed heart failure.

It' just a couple of ideas.

[Kristicats in reply to Hidden]

Yes he’s under a specialist. Had numerous heart tests when admitted to hospital

[Patk1]

There are numerous different biologics,so they should try him on another.Has he had a ct scan to check nothing else going on in lungs x

[Kristicats in reply to Patk1]

Yes just about to have his third ct

[B0xermad]

Hi christie I am sorry your husband is feeling so poorly its and awful feeling having to watch him in pain and struggling on a daily basis,I have no knowledge of his condition but wanted to give you my support

[Izb1]

So sorry to hear your hubby is having these problems Kristicats. I dont know anything about SEA so cant advise but do wonder as Patk1 says perhaps biologics would help and there are a few they can chose from. I do hope you find something to help get him back on track, its terrible feeling so hopeless , mither his consultant , too many of us are left to get on with it. Keep your chin up x

[Kristicats in reply to Izb1]

He’s on his second type of biologics

Hopefully at the end of this course they can try another

[Numptybrain]

Hi I used to suffer terribly from brittle asthma , I had a nebuliser and took medication through that, have they not suggested that? And how is his oxygen levels in his blood? Sometimes oxygen with a nebuliser helps as it did me but I’m not sure if they do that now as this was 30plus years ago. Hope any of this helps but he needs a good specialist.

Take care

Wendy x

[kdr112]

I was diagnosed with severe persistent eosinophilic asthma 6 years ago. I, like your husband, was nearly bed fast and had no quality of life. I finally sought a 3rd opinion at Mayo Clinic. I am happy to say that, aside from occasional setbacks, I have my life back. I take Nucala injections once monthly. I am on Advair 230mg 2 puffs twice a day and Incruse Ellipta 1 puff once a day. I also take singulair. Prior to getting my asthma under control I was taking high doses of steroid every 4-6 weeks. I also had sinus surgery which they thought was a contributing factor to my asthma. Feel free to reach out if you have questions.

[Alberta56]

Can only say how sorry I am for you and your husband. I hope you can find some relief soon.

[knitter]

long Covid not been mentioned ? Has he been referred to a clinic

I have tried various inhalers , some suit me others do not . I have to try and balance reliever and preventer ….I cannot cope if it gets out of balance .

My friend with breathing problems has regular injections ….self administered now and is much better .

Take a look at Patrick McKeown and Janet Brindley you tube videos on relaxed breathing ….I find them useful.

ALUK has a helpline for UK residents open on Monday .

Best wishes

[murphy53]

Think that's where i'm heading too....Take care