No control of asthma symptoms long term - Asthma UK communi...

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No control of asthma symptoms long term

Matti21 profile image

Hi, I've been asthmatic all of my life and now I'm 54. I've been on every possible inhalers of both separate and combination inhalers . I take Singulair nightly , have a nebuliser , xolair injections 600mg, 4 every 2 weeks for 2 years . I can not no matter which inhaler I use gain control day to day and have bought Ventolin tablets over the internet which I was prescribed years ago. They have added Seebri and tried the other COPD inhaler and only make me cough. I feel despite: xolair I'm having, regular chest infections, currently have pneumonia and can't get any relief breathing except taking lots of puffs of Ventolin, which then causes anxiety feelings and marked tremors of my hands. I feel so depressed as I thought xolair would help, Symbicort 400 /12 was changed to duo resp and I've just read the steroid in seretide is stronger . Is anyone else like me can't get control no matter which inhalers or how many puffs and yes tried smart regime didn't work . I'm convinced the steroid and combination inhalers make me cough and breathing worse. But after 52 years it seems so much worse . Any others out there ? ?

11 Replies

Hi Lyn you need a proper check up, ct scan, blood works and going through a phase like that again now They are thinking eosinophils which could be the cause of my yoyo asthma...had the throat specialist, lost my voice, my vocal cords have thickened between the bouts of cough and the meds, they want me to go to a speech therapist! Honestly one thing leads to another...

Take carexxx

Matti21 profile image
Matti21 in reply to HappyGeneva

I've had lots of recent bloods , all out of range! Then after antibiotics repeated them some out of range they said normal as I have access to my results . Then saw resp consultant who is crap and from xray said pneumonia . I've got CT on 28th November thanks to my GP. I don't know if you're on xolair but I'm thinking of maybe stopping it, I was not as bad as this before however I have a very high Ige 1,845 and normal range less than 100. thanks I'm gonna look at the easonophil levels shortly xxx you take care xx

HappyGeneva profile image
HappyGeneva in reply to Matti21

Good luck with the CT scan xx

HappyGeneva profile image
HappyGeneva in reply to Matti21

No xolair..thank you for looking it up for me and good luck xxx

lhorne4 profile image
lhorne4 in reply to HappyGeneva

Hi, HappyGeneva:

Sorry to hear you are struggling with your asthma. I have had asthma exacerbation and can't sleep sometimes because of the asthma. I lost my voice but it was due to symbicort the inhaler which also made my asthma symptoms worse. I find sometimes one thing does lead to another and it is usually the medication prescribed.

Take care

Xolair is the fashionable latest..the eosinophil one ends in zab.. i tell the more I take the more I feel a mess..side effects galore.. take care too xx


Get the book -Relieving Asthma the Easy Vitamin way. Marion's work significantly helped me and has continued to help me over the past 15 years. Also Google - New Zealand / vitamin c / Swine flu. Well worth listening to.

Wishing you all the best -

Sounds like they've chucked everything but the kitchen sink at your condition. Have they given you lots of Tests - like Full Lung Function, CT, FeNO etc - or mainly tried to get away with varying your Meds (which I guess is a cheaper - though sometimes faster - solution)?

If you don't already, consider keeping a full Asthma Journal whereby you record - at least daily - everything about your condition including how your previous night's sleep was. To aid this process I use a Peak Flow Meter (cheap from Amazon or Chemist) for use twice a day, plus a Finger Pulse Oximeter - about £30 from

Spreadsheet works best for me as a Journal as it's important to record how your Peak Flow and FPO Meter Readings were before Each Med Use, plus how they were one, two, three hours after etc. Likewise recording everything you eat / drink - and at what times - plus anything you otherwise put in or on your body (e.g. Non Asthma Meds, Vitamins, Mouthwash etc). Sounds extreme but - given what you're up against - you may well benefit from the insights that a very accurate Journal can (sometimes over a short space of time) disclose. Especially if - when your Journal records are discussed with your Doctor / Consultant - it helps eliminate certain Meds or reduce their dosage.

Ideally some folk on multiple Meds and with lots of symptoms need continuous monitoring in a hospital bed for a couple of weeks where Meds can be varied, reduced or added in a closely controlled fashion.

Vitamin D is an anti inflammatory and is known to help lung conditions.

85% of us here in UK are either low or deficient in vitamin D.

Yes I take loads of vitamins including D and also Magnesium . It's just I vented as I feel I have a lack of flexibility with these xolair injections .

I'm a nurse too and have tried every inhaler on the market currently as I've had asthma since I was 5 years old which makes it total of 54 years .

I've tried several combinations and also spiriva and Seebri which makes me cough and still need Ventolin up to 8 puffs day and I've bought tablets Internet, even maybe more times a day .

Many years ago I was prescribed Ventolin tablets but am told no longer used in the UK . They won't try theophylline but I think they feel asthma is allergy based when I think it's just both allergic type and 'normal type asthma' if you can call it that. I've managed my asthma myself at home with Ventolin nebules in nebuliser when needed and just want them to listen to me .

No normal listening! but empathise and realise that I know my lungs, my allergies, and know it's not controlled.

I get told think about what you'd be like without xolair , well I feel I'm no different with it.

All I read about people coming off inhalers etc I'm so happy for them, but I'm still regularly on steroids and antibiotics and was on permanent steroids for two years to get approved for xolair. I wish there was an inhaler that would control symptoms such as breathlessness, tight chest etc. It took me several trips to the GP and was telling them I was unwell and now it's found to be pneumonia.

I just get sick of people not truly believing you know your body especially as a nurse and want somehow maybe in the future to find an inhaler that is either separate or combination etc to control my symtoms better.

Thanks for responding but wishing you all the best, need to stop posting x

Thanks for all your replies . Hope you have a breath easy evening . I don't know what's happened on this health unlocked but now I am to have 3 accounts going . ! !

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