severe persistent asthma nothing working

[Drew456]

I’m lost for words at this point been dealing with 2 years. I tryed countless medications nothing seems to work I did have relive for periods the. Flare comes and struggle with tightness, sob, burning in lungs,mucus. I cant identify my triggers there’s money nothing bothers me the weeks later every smell bothers me. I’m on gerd meds, dupixent 300, Breo, singulair. Switched inhaler biologic thinking it will get better same results. I had countless testing done everything on paper comes back normal all blood work, PFT , FENo, Cat scan, heart work up, I’m just lost for works at this point. Has anyone been down a path like this? I’m starting to think my don’t know anymore.

[Lysistrata Administrator Community Ambassador]

So sorry to see this Drew456, it sounds very difficult to deal with. As you mentioned biologics, I assume you're already under specialist care. Have they suggested anything? Can you go back to your team and say that things aren't working out and see if they have any suggestions on how to move forwards? Do you have a supportive GP you could discuss things with?

You might want to try calling the nurses on the helpline - you can have the time and space there to chat through your situation. They obviously can't test or prescribe, but they could suggest things to discuss with your GP and/or hospital team and possible ways forward for you. 0300 2225800 Monday-Friday 9am-5pm, message on WhatsApp [phone] or email at [e-mail]

[Homely2 Administrator]

Agree totally with Lysistrata, and I will not repeat her comments.

I wondered how far you had gone down the route of making your home and general environment asthma friendly. Some people go to quite extreme lengths.

You also do not mention a respiratory physio, they can be very helpful. I had six sessions with a physio and she really helped me feel more in control.

My Asthma is very difficult to control and it can feel like a very long and difficult campaign to get there. Best of luck with it.

[Marktime]

Unfortunately I can relate to that and I'm sorry to hear that you're going through it. It is hard to deal with when almost everything is a trigger, have you tried any antihistamine, When I am flared up like that, I have inflammation in my whole body and feel like you described, What I usually end up doing is I stop eating everything for a little while, 12/24 hr., then I will eat a clean homemade food, I make chopped up chicken breasts with potatoes celery carrots it's like a beef stew with chicken, and I stop eating all the junk and processed food, I allow myself one small carefully picked food junk food, and I do that strict for a couple of days, then I loosen it up and I add a few things in. I have been researching and I'm looking now at what I eat and the things that I touch especially food, eggs things that come in contact with my skin can set off allergies which trigger the asthma or trigger the inflammation which makes the asthma worse. I'm interested to know what ways you have in dealing with your asthma. Mark

[Patk1]

Ammonia fumes + other toxic fumes yr exposed to at work are so harmful to lungs+ airways. I hope u can find a resolution. Do go back to gp if no better x

[My_fairy]

Hi Drew456,

Yes it happens when asthma is persistent and asthma gets triggered with everything literally everything that you need to love it can be talking, eating, laughing, sleeping etc. we have been through this … bloods can come normal because of steroids I’m not too knowledgable about why bloods can be normal but my daughters Feno is very good indicator as well as her lung function. I have read on this forum it can be different for people do check with your team.

You need to know what’s your best indicator and try to rest as much as possible also try more herbal stuff like phlegm decongestants and herbal tea to relax your chest. Different stuff to calm down inflammation but obviously you need to speak to your medical team and asthma uk nurses are very helpful.

It will take time to calm down just try to take it easy. I just wanted to reassure you it’s normal what you are going through in persistent symptoms. Just see what medication works and what doesn’t and know your own body signals.

Hope you get better soon

Take care

[Lysistrata Administrator Community Ambassador in reply to My_fairy]

Just adding a note to be careful about recommending/using herbal products, as they could trigger asthma for some people. I'm also not sure how helpful they would be directly on asthma, though I appreciate you're not saying to replace medication with herbal products my_fairy, and you are saying to ask medical professionals.

You're right that FENO can be a good indicator for some people along with lung function but that for others it's not (my FENO is hopeless but I know it works well for others as well as your daughter). Lung function can be tricky as it's such a snapshot if done only in the clinic every so often - some people have been given home spirometry devices, which may give a better picture.

[hilary39]

Yes I've definitely been there. Just to help us a bit more, can you say exactly which biologics you've tried? Do you tend to have allergic asthma or is it eosinophilic? Were you a mild or moderate asthmatic for a long time and then it turned severe? Has anything changeed in your work or home? Is your peak flow normal? Thanks!!