I am powerless: I don't know what can... - Asthma UK communi...

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I am powerless

ewusia28 profile image

I don't know what can help me. Inhalators are not helping me with my asthma. I tried Fostair, Symbicort, Seretide, Flutiform, Spiriva respimat. Nothing helps me. I have to take ventolin 2-4 times a day. I have shortness of breath and my chest is wheezing. Two days ago I had a meeting with a consultant and he said that he couldn't write anything new for me. Are there really no other inhalers left?😭😭😭

35 Replies

Did he say why? Is he suggesting a reason for this?

ewusia28 profile image
ewusia28 in reply to twinkly29

No. He did not say.

twinkly29 profile image
twinkly29 in reply to ewusia28

If I remember rightly your breathing issues have been a problem since you had covid and, while you already had asthma, covid breathing issues are usually very different to those caused by asthma. Asthma can be worsened by it but if asthma meds are not helping then it suggests it's not asthma causing it. Maybe this is what the doctor meant .

Issues caused by covid are very often mechanical (so affecting how we breathe, not causing inflammation as in asthma). It might have happened at the time you had covid and then just stays because we need to teach our bodies to correct it, our bodies don't know how to do it on their own It's very easily done with regular use of breathing exercises and can be very successful.

ewusia28 profile image
ewusia28 in reply to twinkly29

He wrote me a spirive respimat and told me there was nothing else he could do.

twinkly29 profile image
twinkly29 in reply to ewusia28

Ah ok. Thought you'd already started that a couple of weeks ago but maybe not.

It's worth a try (but might take several weeks to kick in properly) but, if it's not asthma causing the symptoms, then asthma meds won't help.

Can you ask your GP if they can refer you to a respiratory physiotherapist? Or a consultant for post covid issues?

ewusia28 profile image
ewusia28 in reply to twinkly29

Yes, I will ask. On the fourth day, when I used spiriva, I got very short of breath and coughing. My GP said that I can't use it anymore. This is the end. I use seretide and montelukast. I still don't have control of my asthma.

I know asthma doesn’t usually count as pain, but you might benefit from a pain management session, or something similar. Your lack of progress is understandably making you very down, so perhaps some help with managing your symptoms while the medication works - they do sometimes take weeks to have an effect - might help. I would also suggest you take a good friend with you to any consultations: discussing it afterwards can give a different perspective. Asthma is a very complicated condition - all sorts of things make it worse/better. I wish you the very best of luck finding some answers.

twinkly29 profile image
twinkly29 in reply to ewusia28

But it might not be your asthma that is the problem - it feels like it but those symptoms can be caused by other things - especially by covid and those symptoms can remain long after covid has gone because we need to retrain our breathing styles to make them go away. Drugs don't help them. If it was asthma then the asthma meds would have helped.

ewusia28 profile image
ewusia28 in reply to twinkly29

I was diagnosed with asthma 20 years ago. I do not know myself.....

twinkly29 profile image
twinkly29 in reply to ewusia28

I'm not saying you don't have asthma - only that your asthma itself might be ok at the moment and the symptoms you are having have been caused by something else, most likely from having had covid because it changes the actual way we breathe, eg too quickly so we feel short of breath, but it isn't asthma itself.

This explains about breathing pattern disorders which are commonly caused by covid:

healthunlocked.com/asthmauk...

I have 4 lung problems and I find that my physiotherapist helps me a great deal with my breathing. She taught me a number of breathing exercises which help, but also I used to sing with one of the top choral societies and although I can not sign as good as I used to be able to I find that singing in the bath {good acoustics } it also helps with my breathing, and I have been told by people with long covid that you may have to train the lungs to react a little bit different to normal. I hate it when the medical profession say that I am panicking because i am told that I am so laid back I can get under a closed door, so do not let them use this as an excuse

Hope that this helps

Good Luck

Have you had a scan of your lungs since you had covid? The consultant should have had one done to check for covid damage. It sounds like you should be referred to one of the specialist long covid clinics in order for your symptoms to be assessed and treated. england.nhs.uk/2020/12/long...

Asthma meds won't help if your breathing problems are long covid related. It's a different respiratory disease and that may explain why all these inhalers are failing you.

Describing shortness of breath is difficult but there are differences. As an asthmatic who developed severe anaemia, I had enormous difficulty trying to convince doctors that my shortness of breath didn't feel like my usual asthma - it took way too long before some open minded asthma consultant had blood tests done and the anaemia was diagnosed and treated. There were many times I felt sheer frustration and quite desperate as my life ground to a halt.

Definitely request a referral to a long covid clinic, if only to get the the right tests to either rule LC in or out. All the best.

twinkly29 profile image
twinkly29 in reply to Poobah

Agree with this but just wanted to add that post covid breathing issues can also be BPD related and not lung damage itself - just in case anyone had a normal x-ray as it's still possible to be affected by covid and not have damaged lungs. This may have been what you meant anyway in which case apologies for misunderstanding!

Poobah profile image
Poobah in reply to twinkly29

Excellent point Twinkly. My sister has long covid and was left with ongoing breathing difficulties but not related to lung damage or breathing patterns, so definitely a complex disease. Thank goodness for specialist clinics.

twinkly29 profile image
twinkly29 in reply to Poobah

Yes there definitely needs to be more of them - and consultants who are interested in all the possible aspects of it, not shipping people to specialists for each bit as connections need to be made.

One resource that I've found really helpful for long covid breathing issues was the stasis breathing program from mount Sinai hospital. They have a specific program for post covid patients and it's free to access from anywhere in the world and safe for those of us with asthma too. If you Google stasis breathing it should come up.

The first few sessions are difficult, I had to build up slowly to the full 10 min as I found changing my breathing pattern caused quite a lot of anxiety about not being able to catch my breath but it was well worth persevering.

Poobah profile image
Poobah in reply to Glty

Interesting stuff! Thanks for sharing the info on this.

Did you talk about a short course of Oral Steroids?

ewusia28 profile image
ewusia28 in reply to Ortho10

Yes. 40 mg 5 days

Ortho10 profile image
Ortho10 in reply to ewusia28

Did you also have a blood test to check you’re Asthma markers (ige igg)?

ewusia28 profile image
ewusia28 in reply to Ortho10

No

Ortho10 profile image
Ortho10 in reply to ewusia28

I’m not sure if you are in the Uk.When I have an appointment with my respiratory Consultant, before I see him I have a Spirometry test, bloods, and if my condition has worsened, an X-ray and Nitric Oxide test.You should be offered these treatments under a Uk Hospital Consultant.

I have Asthma on the maximum dose of inhaled Steroids.

Has your doctor talked to you about biologic shots like Nucala or Xolair? If not, I'd make an appointment to go in and talk about those- They are the next line of defense in the medicine step up system if inhalers are controlling your asthma.

ewusia28 profile image
ewusia28 in reply to hilary39

No. He didn't offer me biological treatment.

hilary39 profile image
hilary39 in reply to ewusia28

Have you seen a step up step down chart for adding medicine? It might be helpful to bring something like this to your next appointment. As you can see in this chart, steps 5 and 6 involve adding a biologic-

ncbi.nlm.nih.gov/books/NBK7...

ewusia28 profile image
ewusia28 in reply to hilary39

Thank you for your message. It's very helpful what you sent me. You've been on steroids since yesterday. 40 mg daily .. This is the fourth time this year.

hilary39 profile image
hilary39 in reply to ewusia28

I'm sorry, I know well how that goes. Definitely keep going to the GP or pulmonologist and find a new one if you need to in order to make sure you are getting properly medicated. Being on pred nonstop is sometimes what we have to do but it's not a way to live if you can avoid it by adding new medicines to your regime. Take care!

ewusia28 profile image
ewusia28 in reply to hilary39

Yes. That's true. I spoke to my GP asking him for a new referral to another pulmonologist. I hope it will change something..

Sorry to hear you are struggling so badly ewusia28, I think a second opinion may be the best thing as it's obviously difficult for us to say what is really going on here.

My Mum had Covid last year (which wasn't diagnosed at the time) and she has found Salbutamol and Clenil has helped to ease the cough and occasional breathlessness she gets as a result. CT scan was clear. You just have to keep digging until you find what works for you - Covid and asthma can be such unusual illnesses, I don't always respond to my asthma medication in the expected way, but we are all different with different physiological mechanisms. Ask for another opinion f you aren't happy.

Having been treated for asthma for many years, at nearly 70 years of age I discovered I have an allergy to milk and dairy products. I was aware of many food allergies but not considered milk. It also transpired that I'm allergic to steroids and cannot therefore take the prescribed salbutamol /Ventolin. I stopped taking it and hey presto! All my asthma symptoms stopped/ I still have some problems with excess mucus but that is due to my other medication and easily remedied with lemon juice in hot water in a morning and inhaling olbas oil in the night.

Not suggesting this is your own problem but did you ever take a look at food you consume daily or medication that may not agree with you?

Lysistrata profile image
LysistrataCommunity Ambassador in reply to JackLina

Just wanted to reply for anyone else reading that even if you identify a trigger like an allergy, please don't just stop asthma medication without medical advice.

Please also be aware that olbas oil can be an asthma trigger for some people - obviously many people are fine with it, but it's a blend of essential oils, which can be an asthma trigger, so if you haven't used it please be aware of that.

JackLina, I'm also a little confused that you're saying you can't have Ventolin/salbutamol because you're allergic to steroids. Salbutamol is not a steroid, it is a short-acting beta-agonist drug that acts directly on the airways to relax them.

What led you to think you were allergic to this? Were you also taking inhaler steroid medications like Clenil (brown inhaler) at any point? Some side effects with either salbutamol or steroids are possible and common, but these don't mean it is an allergy necessarily or mean that you must avoid taking them.

JackLina profile image
JackLina in reply to Lysistrata

Thank you Lysistrata for your input. I did say not to do anything based on my reply and that this was just my own experience. However, I am now confused that my doctor actually stated that I was allergic and I can only think I have misunderstood the content of the drug and the associated conversation.

I had already stopped taking Clenil because it did nothing to alter the condition and merely 'battered' my vocal cords to such an extent I had little or no voice as a result and had an operation to (hopefully) correct the damage done.

Throughout the many years of using both of those, my 'asthma' was not under control and I developed a constant state of trying to clear my throat of mucus. Having stopped using both and doing as I said, beside other things, I have little problems as long as I avoid those foods to which I have an 'allergy OR intolerance. these are many.

Lysistrata profile image
LysistrataCommunity Ambassador in reply to JackLina

I saw you did say that about it being your own experience, but I've seen that people will still read posts on here and try things despite that disclaimer!! So I felt I needed to emphasise that no one should stop meds by themselves based on reading posts on here.

It seems you have found something that helps, and obviously seem to have had more issues than most with medication. It's also possible that your main issue perhaps was something other than asthma, and so the asthma meds didn't help. However, while minimising triggers is important in asthma wherever possible (eg avoiding allergies), people who definitely have asthma do also need prescribed medication. (Again, I know you were referring to your own experience here, but I just wanted to make it really clear for others reading this that if you have asthma you should not try stopping or reducing your meds without medical guidance).

As Twinkly said, I was also trying to understand what was happening. It sounds like your doctor isn't the best communicator.

Steroid allergy is possible but I don't think it's very common, and for most people (not necessarily for you, I can't comment on that as I don't know enough), the solution is to push through side effects if they're minor, or to find an alternative. It does seem however that Clenil perhaps didn't suit you - sorry to hear about the vocal cord surgery, hope you have a good recovery!

If I have misled you, I apologise but just wanted to explain that I have had many similar problems with prescribed drugs and that they are not always the answer. I wish you well and hope you soon find a solution to your own issues.

twinkly29 profile image
twinkly29 in reply to JackLina

I think it's probably very common for things to be labelled asthma when it isn't - and probably the reverse too actually - so it's a worthy point to make. I think Lysistrata was just trying to unpick what happened with you 🙂

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