I'm a long time lurker, first time poster. I had asthma as a child for years and it magically disappeared when I reached my teens. It came back with a vengeance in my late 20s and I started to experience my first ever attacks.
Unfortunately my asthma has never behaved in the standard way. I can be struggling for breath but still getting 550 and over on my peak flow test. It ultimately took a year of misery and A&E admissions being told that I was just 'hysterical' and 'anxious' before they finally did an attack test and began taking me seriously. This was about four years ago and since then I've been taking: 400mg Pulmicourt, Spiriva Respimat and Ventolin. I was on Singular but recently decided to come off it with zero impact on my asthma.
I'm here posting because about two weeks ago I developed a chest infection which resulted in an asthma exacerbation. I visited the GP and was put on steroids for five days which calmed things down but as soon as the steroids stopped, the awful cough/reactivity in my lungs came back. Another GP visit and I'm on a stronger steroid dose until next week.
I feel absolutely awful with the steroids and my chest still doesn't feel right. Yet again, despite this, my peak flow is perfect which means that GPs are giving me a puzzled look along with the age-old: 'But your chest sounds fine?'
I don't get it. It seems like my lungs are hyper sensitive. Does any one else experience asthma like this?
It'd be nice to know I'm not alone.
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Audelia
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You're definitely not alone. Awkward is my middle name. I don't present in the normal way (SATs usually ok, no wheeze, FENO ok...) and my responses to things aren't always classic. Thankfully my consultant and ward staff are really understanding of all this. But other doctors ALWAYS do the "your oxygen is good, your chest is clear" thing. Excellent thanks 🙈. It is really frustrating though so you have my sympathy.
You're reacting to something that's clearly not there always. Sounds to me like microbes. Is there any mold or signs of water damage in your home or workplace? Where are you must reactive? Locate the source and hopefully that can be eliminated so there's not such a strong need for pharmaceuticals.
Have you been to an allergist to have RAST testing to see what type of aero-allergens turn up as an IGE mediated allergy? That would be helpful and not terribly expensive. Ask for ALL pollens to be tested. They generally scrimp and don't test all because those tiny pots are expensive, they make more money not using all. Ask for dust mites, animal dander etc, but those aren't in high suspicion, as they are there all the time. Closely do all molds. That stuff is everywhere and entirely offensive. If nothing major shows up at RAST then mold and bacteria will be your problem. Mold reactivity certainly does NOT always show up at RAST even when it's definitively the cause. There are no such tests for bacteria. It will be especially important for you not to have these undesirable microbes in high concentrations indoors, irrespective of whether they're your major trigger or not.... Which they most likely are anyway. Hugs x
Thanks for your response. I’ve had all those allergy tests done & aside from a slight reaction to pollen nothing showed up. There’s zero mould or fungus in my apartment or work place (believe me we checked this out 100% as I’m well aware of the issues it can cause!). Thanks for your help.
I wish I could check it for you. Several times now I've been told an IEP attended and did ERMI testing and the premises are clean. I've turned up with my horrible and grotesque reactivity and can point them to where simply by the escalating pain that continues to heighten with duration and size of exposure.
Often HVAC systems house it. Look at the vents, see if there is any black coming out. Look under sinks, dishwashers, cabinetry. Was carpet ever wet even if dried quickly? Any water leaks at roof? Musty smells? Pull bottom drawer of walk in wardrobe, look underneath it to see if mold there. If you see dust then mold is present. You take an ERMI a dust sample is collected. Mold spores are much smaller than dust particles, so if you see dust there's a tonne of mold in it and bacteria.
I also have to cover drains as the biofilm of microbes in there cause me breathing distress, mouth burning and subsequent blistering if not heeded. Dirty window tracks are a problem. Just a little (which is actually huge) mold and bacteria along every edge of the home, open windows and seeds the whole house. I must dry the shower completely after every shower or the start of mold causes quick problems and I can't manage the chemicals either than kill it.
I certainly hope this is not your problem... Just doesn't sound like pollen is it? What else is there? The micro environment.....
I too had asthma that was mostly under control until my late 20s. Since then it has been worsening and I've been miserable a lot of these past 9 years.
Many asthma researchers are starting to realize that severe asthma is actually a completely different phenotype of asthma than mild or moderate which makes diagnosing it tricky for doctors who are accustomed to the presentation of wheezing and low FEV (as measured by a peak flow, spirometry test etc.) Severe asthma often manifests in the small airways which are only measured in a part of the spirometry test doctors often ignore. When my asthma was terrible this last winter and I was constantly breathless and waking up out of breath most nights, I was put on prednisone for six weeks and the entire time my peak flow was 470 (it should be 430 for my age and height) but my small airways were at less than 60% on the spirometry test.
I'm also on Symbicort 400, Spiriva, Ventolin, Zyrtec, and I just started the drug Xolair--I would look into that and Nucala (Omalizumab and Mepolizumab respectively) if I were you. I've only been on Xolair for one month and haven't noticed any difference (it often takes 6-10 months to kick in) but for many people it's a miracle drug. It works by targeting and blocking IgE (the immunogloblin that releases histamine and mast cells). Nucala works by blocking IL-5, an inflammation marker. It's particularly good for asthmatics with high eosinphil counts.
Prednisone does make you feel awful but often it's the only thing that can get the inflammation to calm down. People call it devil's candy which I think is pretty accurate. I've been on it so often this past year that I had an adrenal insufficiency issue I'm now struggling with which has been really hard.
So you are not alone or necessarily even sensitive: it sounds like you have asthma like a lot of us do here, too--constant symptoms of breathlessness, regular attacks, allergic asthma, inflamed lower airways etc--with normal oxygen and peak flow measurements.
Take care of yourself and I hope you can taper the steroids soon!
Hi I can sympathise with you. I was diagnosed in my mid forties and was tootling along nicely with it being well controlled . However a few years ago it became a lot worse and I’m now taking fostair 200/6, ventolin, Spiriva Respimat, montelukast, fexofenadine and now a nasal spray too! I’ve also discovered I’m sensitive to lots of environmental things perfume, cigarette smoke, aviation fuel, grass cuttings to name but a few. It can be right nightmare! Again like you peak flow is ok not necessarily my best output but still ok, SATs ok, but coughing and short of breath! Been very fortunate to have not gone to a and e but have come very close. Consultant put me on the spiriva did some lung function tests ct scan and chest X-rays and some allergy tests not sure which ones which showed I had no allergies just reactive airways, then discharged me.
Steroids usually will sort it but it takes weeks to feel back to normal.
In what way are they sensitive. Is it uncomfortable taking in a breath through the mouth, nose or both? I have sensitivity which keeps me awake at night and complained but doctors checked me over but my pulmonary results came back normal. My doctor think it's is to do with my back nasal passages and throat which I clear all the time and is possibly upsetting the top part of my wind pipe. I'm now agreeing this could be the problem and so am going to see an ENT specialist. You should consider that too along looking into to whether you have any acid reflux.
I have had asthma my whole life but it has been totally controlled (with a very rare attack). Then, like you, about a year ago my asthma became uncontrolled non-standard. I went to A&E had some pred but my normal inhalers didnt help much and I could blow about 550 PF during an attack. I had a few other symptoms including feeling anxious
My GP worked out this was not asthma and since then I have been trying to get a proper diagnosis.
I have been to a GI and an ENT.
Best guess so far is silent reflux (LPR), this is commonly misdiagnosed as asthma, but other possibilities are virus damage to the vagus nerve or VCD.
You might have inadvertently hit on the answer when you mentioned hypersensitive. My consultant thinks I’ve hypersensitivity pneumonitis now and I’ve been all through usual asthma COPD diagnoses by GP. A CT scan would help and try to get beyond your GP to a consultant.
Well it does seem like we are not alone. I have a hypersensitive airway which is triggered by a whole host of things. Most recently I found out that freshly cut grass caused my trachea to become inflamed....quickly! There are so many things that trigger this response that leaving the house or mixing in a social setting has been entirely taken off the menu. It’s been this way for 3 years now as constant irritations from workplace chemicals (cleaners) has led to severe tbm. It’s a minefield out there! Dust, grass, aerosols, bleach, perfumes, mold, paint, actually anything with a voc, viral season! The lists can go on and on. Like you however, I don’t present in the normal way. Fev, o2 sats etc etc are generally always good. This can present a problem with being diagnosed and treated accordingly. Thankfully it’s now becoming more recognised that severe asthmatics do not present as the ‘norm’. My consultant told me that although I perform well on tests, that I have a set of lungs that are 25% bigger that expected for my size, but with 25% functional deficiency.....it appears I balance myself out!
The bottom line is this....try not to be discouraged, there are plenty of us out there. Look after your airway like it’s your most treasured possession. Constant irritations for some can eventually lead to a whole host of other problems. Find out your triggers and avoid them (easier said than done I know). Make others aware of your triggers and get them to help you. Hopefully you will reduce your exposures by making yourself and others vigilant to environmental irritants that are detrimental to your airways.
Gosh that was lengthier than I intended. 😃 good luck and stay well
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peak flow best of 3 today ws 400
New to biologics - don't feel particularly well.
Chest Infection and new Biologic
