Is it really asthma...?: Hi guys, on... - Asthma Community ...

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Is it really asthma...?

Ratlady44 profile image

Hi guys, on here just to try and get a bit of advice. I've coped well with Sjoergren's Syndrome since around 2002. Around 8 years ago I started to have pretty bad problems with my lungs, which the Rheumatology clinic casually diagnosed (without any tests, or even eye contact) as Adult Onset Bronchial Asthma. I feel a bit daft because my dad has had bronchial asthma his whole life so you'd think I'd be accustomed to its symptoms! Mine just don't seem the same. I wake up in the morning (EVERY morning) with a totally clear chest; after around 40-60 minutes my lungs start to fill up with a thick gluey mucus: I can actually feel the weight of it in my lungs. This leads to a couple of hours of constant violent throat-clearing and prolonged deep coughing often resulting in vomiting. These bouts have now started occurring in the early evenings too. The clearing and coughing are so bad that they keep me from leaving the house. I never have wheeziness or breathlessness; inhalers do absolutely nothing at all to help. It doesn't seem allergy-related as it happens wherever I am. I do not expect anyone to diagnose me WITH anything, all I want is some advice from people who would have a good idea of things - do these symptoms really sound like asthma?? My GP, asthma nurse, and rheumatology nurse just won't listen to me.

I have just joined the Sjoegren's Syndrome website, but we've had some teething problems with getting me online so I thought I'd pop in here in the meantime and get a first second opinion! Many thanks for any pointers anyone could give me.

9 Replies

I would be very interested to know what answers you get! I have the exact same thing. I assume it’s asthma. I was diagnosed with asthma. But the mucus is so embarrassing and really prevents me from working . Hi, too, can take deep breaths and hold my breath, and it seems my lungs are clear. Do you ever wonder if it’s the back of your sinus dropping this goop down onto your esophagus, causing the coughing fits ? It feels like that sometimes. Let me know what you find out!

I have asthma and have coughing fits you discribed also have stuff running down my throat from nose. As your gp if they can do some tests for asthma and see what the dr say.If been through a lot of asthma meds because the didn't work or disagrreed with me back on my old meds beclometasone anx salmeterol time being until i get results from ct scan and see what he's going to do with my meds change or leave

Have you considered that your coughing fits etc might be caused by a medication or combination of medicines you take - or perhaps by something you eat/drink or by some other irritant in your environment? I’m currently suffering a similar cough to the one you describe but it is definitely an infection as others near me also have it. I had another like it in the autumn that lasted 7 weeks so I can sympathise with how you’re feeling. Have you tried antibiotics at all - I found that a prescribed strong dose of Clarithromycin over 5 days killed the infection last time - the phlegm became clear - but didn’t stop the cough. I began a daily dose of high strength vitamin D to boost my immune system and the coughing stopped. Talk to the asthma nurses online on this site and see what they suggest. To me, an asthma attack has always presented as difficulty in getting enough oxygen, struggling to breathe.

Hi,

First - I am not a doctor or a nurse. I'm an asthmatic with psoriatic arthritis. It doesn't sound like my type of asthma which is definitely helped with ventolin / salbutamol. Which inhalers are you using which don't seem to help? Ventolin or salbutamol (active ingredient of Ventolin) does give relief during an asthma attack.

When you wake up with a clear chest, have you ever tried to stay in bed for an hour or two, to see if the mucus comes when you are lying down or if it only starts to come once you stand up? Or it could be that when you get up, you have a greater need of oxygen and the deeper breathing triggers the need to get the mucus up. I get asthma when I run or exercise. It probably (and I have no real idea) comes from the Sjoergren's Syndrome. Sjoergren's Syndrome can lead to lung problems that still may be titled Bronchial Asthma. Asthma basically meaning "A condition in which a person's airways become inflamed, narrow and swell and produce extra mucus, which makes it difficult to breathe." (Mayo Clinic)

Even though you are under a rheumatologist, I would also ask your doctor (GP) for a referral to a respiratory specialist, as they may have newer drugs/ ideas that would help you that the rheumatologist is not up on. They would also give you an "asthma care plan" with ideas on the best way to handle your particular lung problem.

Wishing you all the best.

I agree with Tugun, ask for a referral to a respiratory specialist in order to explore a more accurate diagnosis (there are phenotypes of asthma) and to consider better treatments, especially as your inhalers aren't helping as expected. As you say, is it asthma? And if so, what type etc.

The fact that you experience a clear chest upon waking but then your chest becomes clogged with phlegm suggests either a reaction to something you're eating/drinking for breakfast or medication that you're taking (some asthmatics are *sensitive to NSAIDs) OR the phlegm may already be there because of post nasal drip or reflux while sleeping and morning movement causes the need to then clear your lungs of accumulated mucus from overnight.

Again, it could be a development from your existing Sjoergren's Syndrome. But tests and examinations should be able to help the respiratory specialist drill down to what is happening and then decide on a more targeted treatment. It's important to explore asthma meds in order to get the right combination for you - what works for one patient doesn't mean it will work for you. Unfortunately, sometimes trial and error may be the only way to arrive at the best combination of treatment.

And you may be able to access a respiratory physiotherapist via the respiratory specialist and that will help you tackle the phlegm efficiently rather than coughing, which can cause fatigue and sore muscles or even rib cartilage pain.

You may want to discuss your symptoms with an Asthma UK nurse before you see your GP in order to get a better opinion than mine about what you're experiencing.

I hope you're able to get some answers and more targeted treatment. All the best.

* sensitivity to NSAIDs can range from mild to anaphylatic reactions, the latter being more obvious, so a milder reaction can go undiagnosed but it doesn't lessen the affect on a patient's quality of life. And taking inhalers that don't work, but that have side effects, just add to the problem.

Hello

I wonder whether sharing my experience will help. About 6 years ago I was prescribed montelukast and took it regularly until a few months ago, when in a bid to get off any medication that wasn't absolutely necessary I decided to stop and see whether it was doing me any good.

And I found that yes, it is helpful. I had forgotten how much my nose used to run, especially when eating. And that I'd had post nasal drip which exacerbated my asthma, mainly cough rather than wheeze. So I'm back on the montelukast and plan to stay on it.

If montelukast is something you haven't tried it may be worth discussing with your nurse or doctor. (Note - I found that it gave me a headache for the first 1-2 weeks, but no other side effects that I'm aware of. More info here: asthma.org.uk/advice/inhale...

Best wishes

Sorry for being ignorant but what is Sjoergren's Syndrome? ... you mention rheumatology clinic so is it some form of rheumatoid auto immune condition?

.... I have a reason for asking

Chip

Pipswhips profile image
Pipswhips in reply to Chip_y2kuk

Just google it, it's a conditionthat affects parts of the body that produces fluids like tears and saliva(spit). It goes on to say its a common sympton is dryness indifferent areas of the body.Dry mouth, eyes, skin, in women vaginal dryness.

Its your immune system attacking your body hence the rheumatologist hope that answer your question

I get this exact thing when my asthma is starting to become uncontrolled. It feels like my lungs are clear as soon as I wake up, but after an hour or so of being awake, I start coughing up phlegm. I think it’s because the phlegm is stuck, and when I start moving around/taking my meds, etc. the phlegm loosens, and I cough it up. Once my asthma becomes more uncontrolled, I get it early in the evening, and then I start waking up multiple times per night. If I take ventoline immediately after waking up, I’ll start coughing up the phlegm much sooner. I also have post nasal drip, but I’m certain the phlegm I cough up is from my lungs. My peak flow is also lower in the morning and evening when this happens.

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