hi everyone I was wondering if I can get some input on here. I been struggling for 7 months it all started this past July. I had severe asthma attack at work had to go to ER out of no where severe bronchospasm. haven’t had asthma symptoms since 8 years ago it came back really severe Recently. They put me on Tezspire and trelegy I did all the auto immune testing never knew asthma could be like this. Before biologic i was in hospital Every other week. I been going on an off with my lungs burning I guess you would call this a flair and it’s hard to explain this other symptom along with it it’s almost like mucus is blocking the bronchial in lungs when I take a deep breath it’s almost like my body can only accept a little of oxygen. That’s how I can describe it. I just don’t know what to do anymore alest every month I have symptoms been on biologic 4 months it helps to degree but still struggling just wonder if anyone else has these issues? I been trough cardiac testing I’m just lost if this is something else
thank you everyone
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Drew456
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I have asthma which is difficult to control, but not as extreme as you. It has taken three years but my drugs are settling my asthma now.
For me my consultants have been very interested at diagnosing and sorting me out when it is very bad, but I also asked for and was given regular access to a hospital asthma nurse who has a lot more empathy than the consultant and is much more interested with helping me tweak my inhalers, alter my add on medicines, and my inhaler technique.
I find the NHS system difficult to navigate but you have to keep pushing your medics to solve your Asthma issues with you. If they cannot, they need to refer you to someone who can. They are so many treatments out there, one of them will work.
Personally my asthma is very influenced by various allergies, so if I have mould in the house, or it dusty, I would have one never ending asthma attack. So is your asthma better in one place than another, then why is that and how do you alter the bad place.
I would investigate the asthma UK website
thoroughly, then ring their helpline on 0300 2225800, office hours, and discuss it all with their asthma nurses.
Then go back to your medics, armed with the ideas and information you have obtained.
You’re right about our health system . I’m over In the US will a nurse there still speak with me? I don’t know how this insurance works. I did every test that they recommended they said it’s not allergic asthma it’s environmental lol. It’s almost like I go through flare ups every moth but shot covers symptoms up because I still feel like strange my breathing. I never realize how people could suffer from this I thought attack every once while.
It sounds like u may have " mucous plug" blocking sm airway.if u look on aluk website,take a look at lung clearance,huffing technique to help bring it up.drink extra fluids to help too.Which inhalers ru on?
I’m on trelegy once a day maintenance. Albuterol and the biologic. It’s kinda of scary if it’s a mucus plug that happens it eventually goes away I do nebulizer go in to panic mode anxiety.
What is the treatment for mucus plug? And yes I have on had rough couple months. Is that part of asthma ? I been on biologic 4 months is helps to a degree but unsure if it’s to early to know if it’s working? In this world you have to do your own research too
Mucous plugs r usually thick mucous blocking a small airway.i get thm often due to severe asthma+ bronchiectasis.read up on the huffing technique, which will shift it.drinking extra fluids helps to thin mucous and make easier to cough up.The most effective antihistamine I've found is fenofexadine, also helped by loratidine, both available over the counter in uk.
Ru using Yr rescue inhaler whn symptomatic? Ru using a spacer device with them eg aerochamber
I feel like I’m gunna die when I get that feeling. Almost like I’m being smothered for a second. I use the nebulizer instead of rescue. I feel like it works better.
Sorry to hear you've been so unwell Drew, especially when there seems to be no reason for the sudden onset of severe asthma.
I'm in the UK, so can't help with the US health insurance system. But I do know that insurance companies will meet the cost of a variety of treatments and can exclude others, but there are ways to overcome this through your medical team and by speaking directly to the insurance company. The AAFA will have more information.
Tezspire is a biologic that treats any kind of asthma phenotype but has varying results. If your asthma isn't being controlled by this biologic then you can talk to your asthma team to see if you can try another biologic, if there's one suitable for your asthma phenotype. I've attached information below that explains the biologics approved in the States. The AAFA is best placed to help you with the American system and how to advocate.
If you Google "non allergic environmental asthma" you can find explanations as to what could be driving your asthma. Understanding that goes a long way in making adjustments and finding the best treatment. This is a shot in the dark, but as you haven't got eosinophilic asthma, Azithromycin may be an add on option. Obviously talk to your asthma team and they may consider it, if it fits with your other treatments and asthma type. It's approved in the UK but not sure about the States. It's a macrolide antibiotic and research is ongoing, as it's known to act as an anti-inflammatory re mast cells, but they are trying to understand the reasons why this happens. It helps asthmatics who don't respond well to steroids, in terms of poor asthma control.
This is exactly how my daughters asthma and she had her major life threatening attack with severe bronchospasm. Since then the asthma is persistent.
Please treat symptoms as soon as they come prompt treatment helps her a lot but she gets random attacks quite frequently.
I obviously have restrictions on what to say because not medically trained but it is very similar to my daughter symptoms and if you are struggling after 4 months of biologics this proves it’s severe therapy resistant asthma.
This asthma comes with random attacks which can be fatal aswell if not treated properly and don’t response to treatment and the attacks come out of nowhere.
She was in hospital alot rather home was an hospital taking prednisone weekly with daily bad symptoms after a life threatening attack like severe bronchospasm you mentioned. Her omalizumab also failed after 4-5 months which was the only relief after the fatal attack in two years.
Please do check with your consultant but I feel there’s no way you can stop the life threatening attacks therefore, you should have a plan how to manage under tertiary hospital as the A&E aren’t well trained or specialist in asthma attacks like these.
We are just treating her with alternative therapy homeopath and herbal a lot of meds because she’s become resistant to corticosteroids and last attack led to complications as this asthma is very rare in children.
She also gets symptoms with little bit of activity when uncontrolled which leads to very poor quality of life if not managed.
It was same for us and I had to a lot of research to make sure it’s not heart related but response to treatment is crucial as omalizumab gave her 4-5 months where she was able to go to school if symptoms improve with asthma treatment it’s definitely asthma for you aswell. Also, i can certainly confirm with experience that my daughters symptoms are very similar and therapy resistant confirms severe asthma diagnosis.
I hope it just gives you a bit of clarity and you can do your own research and get consultant to help you further. Wishing you best of luck.
I hope your daughter feels better soon. I never had severe asthma until I had severe bronchospasm that day I had be shot with epie in ambulance I was never same. It’s weird at the same time my lung will go daily burning on and off for couple days or week sometimes I get Nasaus feeling from a smell. The biologic helped a lot it got me able to go to work again I thought I was gunna go on disability. Now I walk around with nebulizer I work in wastewater which prob doesn’t help. The dr at first didn’t think it was that severe from blow test no doctor understood my symptoms took me 3 doctors. Hospitals like you said give me steroids drip and magnesium . They started me on trelegy got same symptoms nowI’m on biologic and trelegy it helps I was demobilized. I’m about call my asthma dr for another option. I don’t know what else they can do some people say takes a year for biological to work she might say more time. There’s only one other I can try possibly.
You don’t need to have a severe asthma diagnosis but if you have been asthmatic and have some kind of allergy or other types. They should do your tests to find out and give you a proper diagnosis.
I am not sure if you are under a tertiary hospital you must be if you are receiving biologics.
Same with my daughter she was unable to take few steps without the need of inhaler and still has bad days but if your asthma has become persistent and had a major attack it takes a toll on your health and also puts you at risk of another one.
Are you asthmatic since childhood there must be a history and have you every experienced acute attacks before they should look into your history and give you proper picture but be vigilant in my daughters case they made alot many mistakes as it was complicated and then they never believed in us as her oxygen drops late in to the attack but was having regular exacerbations and only inhaler was helping her.
Biologic can take time to work for my daughter it took only two weeks for her and everyone is different but then if they stopped working after 4-5 months which confirms the diagnosis of severe asthma along with many other things they look at.
I would suggest you to have a good consultant and if it’s like my daughter it’s a struggle to find the treatment.
I am not advocating but look into other alternatives to improve your quality of life as my daughter was only breathing with symbicort inhaler even taking a shower required inhaler and so much breathlessness when she was barely in control. Yes you can get nauseous with little bit of smell and she even vomits as you get too much phlegm. This is a sign of uncontrolled asthma. Even her heartbeat can be fast or slow it’s all due to asthma severe asthma is complex and affects differently that’s why you need a good tertiary hospital. Speak to the Helpine they are very good at finding the right hospital in your area.
I am glad the regime is working now for my daughter but doctors don’t have many options for this type of asthma.
Wow you actually explained very well my heart rate goes crazy I thought I was having heart attack. I appreciate you time best wishes to you too. I know it’s not easy
No worries my pleasure … I also try to get help from this forum as you can learn from experiences.
Asthma UK Helpline staff are very good. They help a lot whether choosing a hospital or any advice do speak to them yes it’s asthma when heart starts racing and persistent asthma is definitely a long term condition especially if you have had an acute attack like in your case you got one in 8 years.
Please be aware and do your own research. I have experienced doctors making wrong decisions and never accept their mistakes so don’t let them fool you.
I got one more question when your daughter is struggling does she get like a pail look and he lips get pale ? It’s almost like my wife can look at me and say I can tell your not feeling well
Yes she goes pale when she’s wheezy and her face colour goes dark like a bit blackish side when she’s very tight. She struggles to take a breath in aswell at times like she needs to deep sigh. When her bronchospasm lasts she’s can’t walk or talk and it’s very hard to manage therefore as soon she gets the symptoms taking inhaler is best to prevent further worsening. Hope it helps.
You can DM me if you ever feel like you need to share your experience or understand from another patients perspective. I understand it’s not an easy situation to be in.
I hope Yr daughter has b swapped to another biologic.is she on montelukast? It's really helped my young grandson.his asthma pan says to increase ventolin to 6puffs at 1st sign of symptoms x
No she’s not on biologic anymore we have opted not to be as omalizumab failed in 5 months… 6 puffs of Ventolin do nothing to her she needed burst therapies/ nebs her asthma is very severe… she’s been put on symbicort which maximum takes 6 puffs but her asthma attacks although random but less frequent now and just managing daily symptoms with herbal stuff.. I hope your grandson keeps benefiting from biologic as they are very helpful… thanks for sharing
I am on a biologic which I inject once every 4 weeks. I am told I can't shorten the gap. The effects are great for 3 weeks but the effects then reduce dramatically. Do you think that this is what you are also experiencing? I have been on it for 4 years and just don't plan much in what we call The Week Before.
Yes I do get that too it wears off. But there is moments like recently my lungs burn on and off without biologic I would be in full blown attack. I personally feel like the biologic is covering / fighting the symptoms from asthma bc a lot time I just don’t feel good burning in chest comes and goes I get this worm sensation in my breathing hard to explain. I never new asthma can be like this it changed my life.
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