asthma significantly worse, can't get any help

[trumpisagit]

I have had reasonably bad asthma since I was a baby.
However in my 20s,30s, and early 40s it was well controlled with strong preventer inhalers.
I am mid 40s.
For the last 10 years I have had bad chest infections approximately twice a year (sometimes diagnosed as pneumonia or pleurisy). Antibiotics and steroids have cleared it up well although it always knocks me for a month or so.
For the last 12 months, I have been wheezy almost constantly, it feels like.
The asthma nurse says she has no stronger inhalers to give me. I currently take sirdupla 250 mg 2 puffs twice a day. Salbutamol 100mg 2 puffs twice a day. Plus a few extra puffs of salbutamol everyday when required. Also Montelukast tablets once a day.
I also take cetirizine for year round allergies.
I have just come off the phone to the nurse practictioner and feel like crying. I have told them repeatedly that I am wheezy all the time, and there seems to be nothing they can do.
The doctor referred me for Spirometry (which I believe would have been done at the doctors surgery pre covid, but as its aerosol has to be done in hospital). The referral was in February and still waiting.
The nurse practitioner said she will ask the receptionist to try and expedite my spirometry referral, but there is a long wait.
I said is there anything else you can do to help. No.
I just feel so sad that I am constantly wheezing.
It has stopped me running as often (although exercise doesn't make it worse, but its hard). I don't swim in cold water (sea etc) with kids as I know I will struggle to breathe.
Mornings are horrible I cough and cough for the first hour of the day.
I had an unrelated hospital appointment yesterday, and couldn't lie flat on the couch as I couldn't breathe.

Housework and gardening is a lot of effort.
Luckily my job is chair based.
I am not overweight, don't smoke etc.
Has anyone been in a similar position and can suggest anything?
I want to go back to a few years ago when things were a lot easier..

Could you afford to go private? I know that’s an easy option and not one many can do but just an idea. You really need to see a respiratory specialist. You might be lucky and find that one appointment does it in terms of being able to change your medication. I was in a very similar situation and this was the only way I was able to change things - which is ridiculous and frustrating as it shouldn’t be necessary!

I would also consider going to A and E if things are very bad - they could give you a chest x Ray to make sure that’s all clear and maybe a course of steroids.

That sounds miserable OP. I haven't experienced similar, but when I have had problems with my asthma, Asthma UK have been very helpful. Have you tried them? I think they can give advice over the phone and by email/chat function.

Thanks.
Both good ideas. I don't really want to go private, because we shouldn't have to, and it feels like cheating, but I am desperate.
I will try asthma uk. Thank you

You need to someone fast, badly controlled asthma kills. I'd call 111 and try and get an out of hours appointment this evening. You should be a priority

Do you record your peak flow readings

Do you know what triggers it? Am guessing you've not been tested, but can you try and insist on this? I too have had asthma all my life and it started to get worse when I turned 40. Very unstable and not at all well controlled. I was put on montelukast but it only made a limited difference. For the past 6 years I have been have 4 injections every 2 weeks of Xolair which has literally been life changing.

www.xolair.com/

There aren't many people on it due to the cost to the NHS but I would definitely look into it. Feel free to DM me if you have any further questions.

Sorry, meant to also add that I think you should go to A&E. Wouldn't normally suggest but you've tried everything else. It might get you a referral to the respiratory team at the hospital. Sending love OP, I know how awful it is. x

@hedgehogger1 Thank you, and I am sure in some cases you are right.
When I was at secondary school, a girl from my primary school class died of an asthma attack.
However this is an everyday wheeze and coughing if I exert myself. I wouldn't describe it as an asthma attack.
I did record both peak flow and o2 levels for asthma nurse a couple of months ago. My average peak flow was lower than it used to be .

Maybe not but it is not well controlled which will significantly increase your chance of an attack

Ask for MART regime from the nurse practitioner. You will need to change from sirdupla for this regime. Have a look on asthma uk MART regime. It is worth trying.

I would really like a referral. I am not sure I have seen a specialist since I was a child.
In my opinion it isn't bad enough to go to a and e. It's the unrelentingness of it that's getting me down. It's not urgent, just continutous.
Thanks @sidsgranny That sounds amazing. I will message you.

you need a referral.
why did the asthma nurse not think of that? that's neglectful.

there are other medications that might be suitable for you, like xolair.

@twig1234 I have had issues with allergies to inhalers in the past.
The 2 this happened with were Flutiform and Symbiotic. They both contain Formoterol fumarate dihydrate. I assume this is what I was allergic to.
I don't know if these are MART inhalers.
Asthma Uk says
A combination inhaler can only be used for MART if it has this specific type of long-acting bronchodilator - usually formoterol - that can work quickly as well.

Do you know what inhalers are MART and I can see if there is one without Formoterol fumarate dihydrate.
I had facial swelling and itching, so anything with this in wouldn't be an option. I think this also put the asthma nurse off changing my inhaler again.

Googling Xolair now...

My asthma was pretty settled through my life but in peri menopause it was much worse. Then in actual menopause worse again. This could be happening to you too.

@caringcarer Yes it has definitely changed without any obvious cause.

Duoresp, fostair and symbicort are used for mart and all contain formetarol which may explain why they haven't tried you again if allergy component. Ask to have blood eosinophils checked. Any smoking hx, produce sputum? Worse whilst at work ? Occupation risk. You do need the lung function tests and referral to resp now.

do you have pets?
feather or wool bedding?

@twig1234
Thanks
"what does smoking hx" mean?
I don't smoke.
I cough up mucus in the mornings, every morning.
Work is fine as desk based at home.
I will try the dr again. I feel like I have had the same conversation repeatedly, and apart from prescribing antibiotics or steroids, it doesn't get any further. I don't know what to say to get a referral. Should I just say I want one?

@purplesequins
Yes to pets, but I don't allow them in my bedroom, hoover and sweep the rest of the house everyday.
Wood floor in my bedroom.
I would say I am mildly allergic to the cat, but wash my hands after stroking her. The dog seems fine.
No feathers or wool (vegan).

yes ask for a referral
also for allergy testing, it could be made worse by your pets (sorry)
ime not letting pets into the bedroom is not enough

It might be worth speaking to the respiratory nurses in British Lung Foundation. They're the only people I've been getting any sense from lately. Go on their page online and there's contact details there.
Push for your appointment too, ask for a cancellation or a word with the hospital respiratory nurses, who could maybe push things along or advise you on things to try while waiting.
A brittle asthma specialist is another idea, but you're usually referred on from the respiratory doctors.
Ask gp for a 'rescue pack' of antibiotics and steroids. So you don't have to wait ages for an appointment or fight through the receptionists whenever you worsen.
Also keep a diary and keepa record of peak flows so you can spot any triggers and show it to the specialists.
It sounds very uncontrolled, any signs of worsening, I would speak to gp/111/ go to a and e straightaway

Yes sorry smoking history. Sometimes resp diagnosis changes with further investigation. Bronchiectasis, chronic obstruction due to uncontrolled asthma in younger years. But this seems unlikely. If the surgery cannot offer further inhaled therapies ( understand with allergies) then you need to be assessed in secondary care. They may need to req ct scan. Or offer biological therapy and only secondary care can do this. Try contacting asthma uk too as well as British lung foundation. Although it appears not life threatening, uncontrolled airways are serious snd overtime can lead to irreversible lung inflammation. Sorry for disjointed messages I don't know how to tag on here. You must feel exhausted with the ongoing resp issues.

Thank you for all the ideas.
I will go back to the drs and request referral directly and contact asthma UK.
Yes I am tired.

By the way you tag by typing @ and the username directly after.

I have allergies and fexofenadine has really helped. Wonder if they would try you on that?