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Doctor saying it isn't asthma, but I'm not really following what he says

elmothebrave profile image
14 Replies

Does anyone have any experience with their doctor saying its not asthma, when pushed he said might be a mucus plug, but said this was caused by inflammation which is what I thought asthma was? Had a few exacerbations lately and it's horrible to feel so out of control. Back on prednisone and amoxicillin after coming out of hospital Wednesday, where the consult thought asthma attack.

GP switched me from seretide 250 to fostair 200/6, but hospital switched me back again. Gp also doesn't like that I've been put on spiriva respimat, but they put me on that because they thought post nasal drip was causing issues. This year my asthma has seemed wayyyyy more erratic than ever before. Advice or words of wisdom greatly appreciated.

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elmothebrave
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14 Replies
twinkly29 profile image
twinkly29

There are all sorts of things that mimic asthma in terms of symptoms but which asthma meds don't actually help for. So it is important to find out exactly what the issue is - if it's not asthma then no asthma meds will sort it out.

However, it's really unhelpful when they sort of leave you hanging. Are you seeing this doctor again? Can you contact them if not? Or discuss with your GP? As in ok you say this....so what do we do about it? Because just leaving it as well I think it's this doesn't change anything for you.

elmothebrave profile image
elmothebrave in reply totwinkly29

Thanks for reply. I asked how I could prevent this mucus plug if it was that, and he said that the steroids would get rid as it was an inflammation issue. But if the asthma is out of control wouldn't it be the case that there was more inflammation, hence a need to bring it under control. I've enquired about like allergy stuff but they say I'm on everything I could be in that sense. He has sent me in a few times for suspected PE, but never shows up. His big issue is my heart rate is super high when I go to see him. It always seems a bit wishy washy in terms of what he thinks it might be. I've got clinic on Monday so will just reiterate everything.

twinkly29 profile image
twinkly29 in reply toelmothebrave

Mucus plugs aren't necessarily to do with inflammation - I don't know exactly what they would be linked to although maybe infection (when it turns to infection). Asthma can cause mucus but equally so can other things. But even if inflammation is causing the mucus it doesn't have to be because of asthma (ie there will be different types of inflammation). So that probably all sounds vague and woolly too - in some ways it is because it could be all sorts/stuff might or might not be linked. But still doesn't really help, sorry! I guess maybe steroids will help if it is inflammation causing it - but equally the question is what's causing the inflammation and how is that dealt with more long-term.

I think I'd call my GP and try and ask them (assume it was a different doctor saying the mucous plug stuff?) If they don't know or it was them saying it, maybe ask for a referral to a respiratory specialist to look at the issues?

It does sound like a half-diagnosis that doesn't give you anything helpful.

Poobah profile image
Poobah

If it is a mucus plug then your GP would referring you to a physiotherapist for breathing exercises and controlled coughing techniques, especially if steroids and antibiotics haven't worked. And I agree with Twinkly, in that a referral to a respiratory specialist should be made sooner rather than later so that tests can be done to establish what's going on. And a sputum test would be helpful, in that they can test for infection but also look at other debris that can help with diagnosis. Be bold and ask for a referral to a specialist.

In the meantime you may find this physio vid helpful:

youtu.be/kC-H8fFzZes

elmothebrave profile image
elmothebrave in reply toPoobah

Thank you, when I asked about specialist a few weeks ago, he said he would refer IF something showed up on chest xray or there was no response to fostair. I also asked about physio and he said yes but it wouldn't happen. Obviously that's rather useless, but I do try to do breathing exercises. Now I'm back on the seretide I don't know where I stand. My chest definitely got worse when I started the fostair, but then he seemed to start me at the end of an exacerbation, which I've since read isn't supposed to happen. Will push the specialist thing again

Tugun profile image
Tugun

Hi,

I don't know if it is asthma or not. it could be an exacerbation of something different from your previous asthma or maybe it is asthma. Tests need to be done.

Asthma usually responds to Ventolin (Salbutamol). Have you had a Lung Function Test? This is usually done before taking salbutamol (ventolin) and after taking a dose of salbutamol. Those with asthma usually see a clear improvement after taking the salbutamol. I'm assuming that this was done either at the request of the GP or at the hospital. If it hasn't been done in the last few years - request it.

Not sure why the different ideas concerning seretide and fostair. Different people find one better than the other. I would advise you to google both; look at their benefits and side effects and decide which you feel may be most helpful to you. Your doctor doesn't seem to tell you why he doesn't like something which makes it difficult for you. Different doctors have different ideas as do different medical clinics. Also google spiriva.

"Spiriva is not a steroid. Spiriva acts on chemical receptors in the airways to relax the muscles and increase airflow. It's also NOT to be used as a rescue inhaler; that's what your albuterol (salbutamol/ventolin) is for." (goodrx.com)

Spiriva is a long acting medicine used for Asthma and COPD. Ventolin acts immediately - or close enough to it.

Just remember - you know your body best and what does and doesn't work for you.

Wishing you the best and hopefully you will find the answer for your symptoms.

elmothebrave profile image
elmothebrave in reply toTugun

Not sure when I last had lung function test. In hospital I had nebuliser and Peak flow was checked before and after, there was little change but they didn't do best of 3 or anything just took the first straight after nebuliser was done. Today my pef was 405 then 10 mins after ventolin had gone up to 440, which seems to indicate more of an asthma issue, but I guess what is confusing is that the doctor isn't clear on what might be causing the mucus. I read that about spriva too but then my doctor contradicted it by saying it wasn't for asthma, I feel like I've got tons of things going on but they havent found out what yet. Thank you for your help

Tugun profile image
Tugun in reply toelmothebrave

I find that if I am very sick (chest infection and asthma) then a dose of ventolin (whether it is in a nebuliser or not) doesn't always provide immediate relief, particularly if my lungs are tight with infection. I sometimes need extra doses before I get relief. Also sometimes there is more relief after a little while rather than straight away.

Sounds like more lung tests need to be done. Has your GP referred you to a specialist?

elmothebrave profile image
elmothebrave in reply toTugun

Yeah I can understand that, sometimes it takes 6 puffs of ventolin to get to something to feel a bit better. No referral yet, have asked a few times now so will just keep on asking until I get it!

Tugun profile image
Tugun in reply toelmothebrave

As a last resort - go to another doctor to give you a referral. Sometimes you have no other choice. Wishing you the best.

HannahBenson profile image
HannahBenson

Hi...I can only share my experience with asthma and Prednisone. My asthma was getting worse every year and I also have other pulmonary issues...bronchiectasis etc. but I felt my asthma was following a worsening pattern which would develop when my eosinophil count on my CBC was heightened. When I would take Prednisone...asthma would get better until I stopped the steriod...but I was constantly getting one bronchitis or pulmonary infection after another. Prednisone, especially high doses and prolonged doses will lower your immune system. My Pulmonologist was prescribing Prednisone at least once a month until it stopped working. I told him I thought I had eosinophilic asthma and I had read that they are using monoclonal antibody meds. to control...He wasn't really agreeing with me so I went to the Mayo Clinic where they diagnosed me with eosinophilic asthma...I was slowly taken off Prednisone and it's been a year and I have not been sick nor have I needed steroids. I take a monthly injection of mepolizumab (Nucala) and so for (a year now)...everything is ok. Good luck...your blood work can tell you a lot of what is going on as far as inflammation.

Tugun profile image
Tugun in reply toHannahBenson

It was good to get that info Hannah. I'll look into it as well. Thanks.

elmothebrave profile image
elmothebrave in reply toHannahBenson

Glad to hear you're doing better! In the hospital they did mention that something was high on my bloods, but didn't actually say what it was (consult talking to junior doc). Will add this to my list of discussion points for my appointment tomorrow!

elmothebrave profile image
elmothebrave

I guess this is something I'm confused by, the GP used the word inflammation in relation to mucus plugs. I thought that physiologically asthma was inflammation in the lungs, with that inflammation leading potentially to overproduction of mucus. But, gp keeps saying he doesn't think that my symptoms are asthma, then threw in the mucus plug/inflammation thing without explaining what else might be causing inflammation.I know that I have particular triggers for the asthma, including pets like cats, and the reaction there is quite distinct to say what I get when hay fever is in play. If I get a cold then invariably I end up with a chest infection, with massive exacerbations of symptoms.

I'm researching the comorbidities of asthma now to present some questions at my next appointment. If it's not asthma that's fine, but I need to know what it is because it's hard living feeling like you're on the edge of an attack constantly.

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