Relieved, yet confused

Hello,

Am very fresh to this site but it seems to be incredibly helpful and supportive.

I have had issues with my chest since childhood, having hay fever and other allergies like cats and dogs. Told l was asthmatic at 40 and been using inhalers like a trooper since. Tweleve yeats ago had tests for bronchiastasis which showed lungs were fine and my allergies were to blame and that was that.

Over the past ten years have suffered with very frequent recurrent chest infections, sinusitis and laryngitis. Was given a ct a month ago which shows lungs are fine and says is what it was before.

Now, here's my initial question which l hope someone can help me with:

Sometimes when just walking l get pains in what appears to be my lungs, feels like tiny needles are jabbing them. If l sit down and take my inhaler it goes off but returns soon as lm walking.

Anyone had any experience of this!

Many thanks

24 Replies

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  • Welcome ppm and glad you have found this great site. Hopefully someone will be able to answer your question soon. Just want to wish you well. Xxxx

  • Why, thank you so much

  • I haven't had that experience but wanted to say welcome to the forum. :)

  • Thank you

  • Hi, I haven't had this but I can appreciate how irritating it must be. I am sure someone will come along with an answer eventually. Meanwhile, welcome. x

  • Thanks

  • :)

  • This is probably just your uncontrolled asthma. I have the same profile as yiu except that I have had asthma since childhood. Repeated tests show lungs are fine, chest is clinically clear but used to get breathless when walking ir talking and feel pains in ny lungs especially when walking. This happened for years before my mdeications were changed after much trial and error. I now take small/moderate doses of medications for asthma, allergies, sinusitis/postnasal drip and GERD (gastric refkux). I have never felt better but there are still days (few and far between I must say) when due to an asthma flareup i feel like the chest is constricted and even though I wouldn't get breathless when talking like I used to, I would feel chest pains and breathlessness while walking outside. This happens especially in the city with all the pollution and walking up and down stairs in tube station.

    My asthma issues were certainly multifaceted. I am currently taking relvar ellipta inhaler for asthma/breathing, lansoprazole for gastric reflux as stomach acid going into lungs was affecting my sleep and making asthma much worse than it would otherwise be, Avamys nasal spray for controlling chronic sinusitis and nasal mucus dripping into lungs and Fexofenadine for allergies. As each medication was added to rhe mix, it made a significant difference to my asthma symptoms. The medication for gastric reflux, lansopraole, has especially been a blessing and is responsible for at least 40% of the improvement. My voice was had gradually became more and more hoarse and muffled and throat often sore. Again, this is not the case anymore and I am quite sure this was caused by gastric reflux and post-nasal drip both of which are now well-controlled if nit completely eliminated.

    After years of slowly grinding to a halt as my asthma had become debilitating, I went back to my GP so many times that he referred me to specialists in London's Royal Brompton. I have seen several there (allergy doctors, asthma doctors and soon to see and ENT specialist). This running up and down is what has led to the various asjuatments to my regimen that now allow me to feel perfectly healthy on most days with no signs of asthma. I suggest you hassle your GP surgery in the same way :) I think with asthma, there's alwaya more that can be done.

    Hope it helps!

  • Hi

    Been the weeks of the Fexofenadine and much improved. Minimal sinusitis now. Thank you so much for the info.

    Heather

  • Hi

    Wow!

    I also have everything but gastric issues.

    Use neilmed twice daily as a rinse

    Take 3 cetrizine daily

    Have symbicort

    Have ventolin

    Also get antibiotics on pres

    Have lots of sinus issues, chest infection, laryingitis etc.

    Really suffering now hay fever season is back

    Truly great to know am not alone.

    Thank you

  • Hi,

    Actually i find it equally heartening to know that I am not alone! Can I just say a few things:

    1. Using neilmed might clear your sinuses but is probably not so effective in controlling mucus production and dripping of mucus from sinuses into lungs. You may never notice it as it happens silently. I used to be on Flixonase (a steroid spray) which was effective but in last winter allergy season was moved to Avamys (another steroid spray) which I find is much more effective than Flixonase and at much lower doses. If you allergies are so bad that you take three cetirizines a day and use neilmed twice daily, I believe you would benefit ("greatly" i believe) from adding a steroid nasal spray to your regime. It took several months to show any results the first time round but once it did, my sinuses have stayed mostly clear ever since. Another nasal spray that worked wonders was Dymista which is a combination of steroid and an antihistamine. However it used to make me drowsy so I moved to Avamys. Note all these nasal sprays deliver an extremely small amount of steroid directly to your sinuses. So they are very effective even though the quantity of steroid they deliver is negligible (in case you were put off by the repeated mention of steroids).

    2. I never knew I had gastric issues either (stomach acid refluxing into oesophagus and dripping into lungs). It is only when I started taking lansoprazole (which the doctor gave me on a hunch) that I realised that:

    a. Frequently, and at random times during the day, I would get a very low grade wheeze, almost inaudible, for no reason at all. Only some of time would I actually feel heartburn (which is really pain in the lungs due to mild burn/abrasion causes by stomach acid).

    b. I used to wake up with parched throat and mouth and first thing I'd do in the bathroom would be to clear mucus from ny lungs that had accumulated overnight. This had become a feature of my asthma for many years.

    c. You mentioned pain in the lungs. One specific point where I used to get pains/burning was a few inches above the point where the rib cage divides and slightly to the right. Turns out that is where the big windpipe divides into the lobes of the lungs and maybe thats where acid was gathering.

    All of these symptoms disappeared within a few days of starting lansoprazole and its only then that I realised that they had been there all along (for many years). All that I had ever noticed was occasional heartburn (which of course has also completely disappeared now). Also, the two times I had to stop lansoprazole for endoscopies, the symptoms came back within a few days and my asthma became significantky worse. Also, the hoarse/muffled voice came back both times. I guess what I am saying is acid reflux can be a silent problem and can go undetected for a long time.

    3. You might find it useful to have elements of your treatment adjusted over time by your doctor. I have through several inhalers (including symbicort) to get to tje current one (relvar ellipta) which works extremely well. Also i have been theough cetirizine and loratadine over the years to find that fexofenadine works brilliantly for me (as effective as cetirizine but without the drowsiness). Like you, my allergies are so bad (I get hives as well in two allergy seasons in year) that I am on double sometimes triple dose of fexofenadine (usualky two tablets a day but occasionally three when usual dose is one 180mg tablet a day). But at least this dosage keeps me almost completely symptom free.

    Good luck!

  • Hi

    I too find it most helpful having someone with similar symptoms as l have felt so alone and the only one.

    I do have a nasal spray 2X 2 daily Mometasone

    I also have a stomach acid tablet but when given was linked to my pain tablets which upset me lots.

    The pain is on back, below shoulder blade to above waist, both sides which radiates around the front of the ribcage on left side mainly

    It was an ENT specialist that said to use the neilmed and it is very effective at removing anything in my sinuses.

    An allergy specialist did the allergy testing and put me on the spray and cetrizine

    First thing l do as soon as l wake is stand over the bathroom sink emptying my lungs: yeah!

    Over night l wake lots with a dry throats and coughing.

    I wheeze a great deal at different times of the day but especially at night which also wakes me.

    I have a feeling 24/7 of something in my throat and swallow like a lune!

    I have always felt so alone. No one seemed to be like me. I feel awful constantly coughing and producing. My family and close friends don't bat an eye but when l was on a plane recently a woman requested a mask as she didn't appreciate me! I always have tissues in my pockets and always cover my mouth but l felt ashamed.

    Thanks for answering and passing on your ideas and meds. I will copy them and ask my GP about them, that is when l eventually get an appt. been trying for 7 weeks now. Don't want to have to see anyone else as l have to start all over again.

    Heather

  • Dear Heather,

    There IS light at the end of the tunnel. You just have to keep chipping away at it!

    I was in much the same position as you. I would avoid saying much in a social setting as that talking would make me breathless which would be very embarrassing. I especially avoided laughing as people could hear me wheeze as I laughed (colleagues even made fun of it) and if I laughed too much I would cough and sometimes produce mucus which would be even more embarrassing.

    The chest pain starting just under the should blades and going down and to the side, I had that too.

    All of that is gone and I feel perfectly fit and healthy on most days now that asthma is under control. Even the bad days are MUCH better than every single day I spent for years in uncontrolled asthma hell.

    Regarding your current treatment, can I just say:

    1. I am not a doctor but my (perhaps naive) understanding is that newer more potent steroids used in newer nasal sprays and inhalers are more effective at the sites at which they are delivered (lungs or sinuses). Moreover they work at lower doses and have reduced/fewer side effects. It might be that symbicort (containing an older steroid molecule called budesonide) is causing the excess mucus production while still not controlling your asthma as I suspect it did with me when I was on it. First I was on Symbicort 200 twice a day. That brought some relief initially but then stopped being effective. So moved to Symbicort 400 twice a day (double the dose). When that stopped being effective, my dose was doubled another time to Symbicort 400, two puffs, twice a day. It is during the year that I was on this extreme dose (1600 micrograms of steroids a day in total!) that I remember having the worst lung mucus ever and the most dry, parched mouth, especially first thing in the morning! It was almost surreal to drop from that dose to a single puff in the evening of Relvar Ellipta (only 184 micrograms of steroid inhaled daily as opposed to 1600) and suddenly have the mucus cut down, and asthma improve dramatically, and not feeling mouth and even skin being ridiculously dry all the time.

    2. Similarly Mometasone is an older steroid. Fluticasone Propionate (marketed as Flixonase) is more potent and requires only once daily dosing. Fluticasone Furoate (marketed as Avamys - this is what I am on now) is among the newest steroids available in nasal spray form. This too requires once daily dosing and I think is the most effective of the three. Dymista (a combination of fluticasone propionate and an antihistamine named Azelastine) was extremely effective when I took it for a week but the antihistamine in it used to make me drowsy so I had to stop. Moving to one of these two (Dymista or Avamys) might improve your asthma symptoms by cutting down any mucus from your sinuses dripping into your lungs.

    See this article: ncbi.nlm.nih.gov/pmc/articl...

    The section entitled "Potency and systemic effects" I found to be particularly relevant as it seems to validate my own experience as I have described it above. You might find it helpful to print it and take it to your GP.

    Regards and Best Wishes

  • Managed to see a GP today. For steroids.

    I asked about changing to the ones you suggested but cost is involved.

    I did try the nasal spray in 2011 but it made me worse. Apparently the inhaler is for COPD so l don't meet the requirements.

    She did agree to let me try the allergy one but to told me it's a red drug for cost l would only get a months supply as again cost always comes into it.

    Thanks

  • Amazing! I have never thought it could be the mess am on.

    I rarely go out as l find if l laugh, l cough, if l cough, l produce, every time and it's damned embarrassing! Only ever go out with trusted family and friends who are used to me. Have perfected the fake sneeze collect in tissue over the years. When l was working, as a teacher, my children very quickly got used to me but why should they have had to!

    Going to have a look at that article. Thank you.

  • Oh, now 8 weeks as still couldn't get an appt today for not two weeks. Know it's not urg not and would never take an emergency appt but this is just getting ridiculous­čśö

  • Hi Heather,

    I just can't believe your doctors brought up the cost when you have been suffering so much for so long! I got that initially too but after I had gone back several times, I think they felt compelled to prescribe the more expensive medications to me because they could see I was really suffering and was really at my wit's end. But still, given your allergies are so severe that you have to take three tablets of cetirizine a day (usual dose is one), and you have been so unwell for so long, I think your doctor is legally obligated to change your medication regardless of the cost.

    Please go back, get a same day emergency appointment or something on account of being very unwell, and bring up your condition again. Also, try a different doctor in the surgery this time. In my surgery, I found some doctors to be quite stingy, others fairly generous and yet others in between. But they all have an obligation to try other available medications if your condition is not improving (given that so many other medications are available for asthma and new ones come out all the time).

    Relvar Ellipta 92mcg is for both asthma and COPD whereas the 184mcg one that I am on is only for asthma. Note it is only in 2015 that it became approved for asthma; before that it was only approved for COPD. So maybe your doctor isn't up to date or maybe he didn't spend enough time looking at your medical history. Also, it is actually not that expensive. The following page from National Institute of Health and Care Excellence gives the cost (£38 a month for Relvar Ellipta) and also shows that other available Symbicort alternatives cost between £29 and £76 a month. So I don't see why 38 quid a month is a problem. (I was on Symbicort 400 two puffs twice a day which came down to £76 a month so I can understand why they readily moved me to Relvar Ellipta - it cut their bill by 50%!)

    nice.org.uk/advice/esnm34/c...

    Also, if your new nasal spray works better than your previous one, I am pretty sure that your doctors would be obliged to keep prescribing it to you again. They can't take it away from you just for cost reasons as that would make your already debilitating condition worse. So please bear that in mind if you have to confront them when renewing the prescription for it.

    I also take motelukast tablets (trade name Singulair) 10mg once daily. Sorry I forgot to mention it earlier. I think it is a standard medication for asthma and I believe it helps.

    Hope you feel better soon!

  • Hi

    My symbicort is 400/12 and 2 puffs twice daily. I get what you're saying about seeing someone else.

    I'm going to take the new antihistamine for the next 30 days and see if there is any difference. The scientist in me knows only change one thing at a time! Lol

    Appreciate your support,

    Heather

  • This is the same dose I was and I have never suffered in my life as Much as I suffered on this extreme dose of Symbicort for a year.

  • Been on it 13 years

  • :O

  • What is the Motelukast help as definitely not on them.

  • Hi Heather,

    Montelukast is probably the first treatment prescribed to asthmatics I believe and I think it is part of any asthma regimen as I have always been prescribed it by every GP I have seen over last 15 years or so. It is so safe they give it to babies so a very well tolerated medicine (that's what my doctor told me).

    I have always found it to be very effective. When my asthma was uncontrolled, I found I would feel worse if I ever ran out of it although now it matters less than the inhaer I am on.

    Good luck

  • Looked up what singulair is and am stunned not taking it!

    Another one to ask about.

    Thank you

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