Inhalers are my problem

[ohdearherewegoagain]

Please bear with me.

I am 61 years of age. I have had a problem with lack of energy for a while. Last year I started to also have a bad cough in the morning, sometimes unable to breath. I was rushed to hospital unable to breath and with infections and told by A & E that I had mucus on my lungs and must clear it and take care of it. Nothing else followed that. My doctor put me on steroid inhalers and I FELT better for a short while but then I got migraines, pains in face, throat, knees (they can give you gout) cough got much worse, and more, was often feeling too ill to go out or do anything or work.

Whenever I told the doctor this they would swap the inhaler for anohter but the side effects would be just as bad, sometimes the same, sometimes different, after a few days. I presume bcause it builds up in the body. I keep geting thrush and infections i my throat (please do not tell me that if you use the in halers a bit less or use a spacer it does not happen, it happens with me).

In the meantime I continued to get episodes where I could not breath or got so raspy and wheezy and an infection and so on. I insisted the doctor do more so she arranged for me to see a consultant at the hospital. This took over a year.

This may I saw the consultant for first time. I explained this to him. I told him that I would much rather take the oral steroids as I do not get these side effects with them . He went on about their side effects (bones and glucoma/cataracts) which I had researched. I said but you can get those on the ordinary inhalers and they are far worse on a day to day basis, but he insisted on giving me a heart check up

and a lung test and told me to continue with the inhalers!

I had the heart scan which showed it works fine. The lung test was to check if inhalers help my lungs breath. I already knew that and could have told him that.

He then wrote to me to say carry on using the inhalers. !! End of.

I am at my wit's end. I waited so long to see him and he has told me nothing I did not know before. If the inhalers had been ok I would not have been going to see him.

I am now tempted to get oral steroids myself and just take them myself.

The only times I have felt well enough to work , go out and do normal stuff over the last year or so has been those times I take them.

Has anyone else been in a similar situation? If so please tell me abot it.

Please do not say go back to your doctor and all taht stuff. D|one that loads of times. The doctor told me she could not do anymore other than send me to the consultant. And he has signed me off after simply telling me to use the inhalers which give me all of these problems. I have tried all of them so please do notd try to tell me about a different one!

[EmmaF91 Community Ambassador]

Hi sorry to hear that you’ve had a bad year of it!

I had some issues with my preventer until I switched to a dry power one and now I’m a lot better with it despite one DPI being the same brand as the MDI. I’m now on a completely different one but still DPI and on real issues, so that’s the only thing I can think of but if you’ve already tried DPIs then 🤷‍♀️.

Have they confirmed exactly what’s going on... ie asthma or COPD etc?

They main reason your consultant is apprehensive about giving you steroid tablets is that your chances of getting the bad long term side effects rise exponentially when compared to steroid inhalers (different uptake mechanism). But I understand it that’s the only thing that seems to help you so I guess your in a catch 22, and have a fight on your hands if you do want them.

I hope you find something soon that will help you anyway! Thinking of you x

[ohdearherewegoagain in reply to EmmaF91]

Hi and thanks for the response. I can easily get my own steroid tablets, I am sick and tired of feeling ill and asking them to understand and help. my life is so difficult now, often feel too ill to do the housework, go out, work, and this is very much affecting my happiness, the state of the house, my income and my relationship. I do not have COPD as I have never smoked and it is strange tthat my so called asthma only got worse when I used inhalers, before that I had no problems with wheezing, coughing and all the rest, just energy.

[Superzob in reply to EmmaF91]

I agree. Dry powder inhalers definitely worth a try - I converted after problems with 4 aerosol propellant inhalers. Also, with the thrush, I try to brush my teeth, rinse and gargle after using the inhaler - seems to have worked so far.

[ChrissieMons]

I do feel for you. I am no medic but I wonder if there is an underlying health issue here. When you are exhausted you are much more vulnerable to physical illness. Might you have something like M.E. or post viral fatigue? I assume you have had allergy tests; if not that might show up a problem. If you decide to get your own steroids you should have bone density tests as they can accelerate osteoporosis. I found a pulmonary rehab course useful or a pain management course might help. I do hope you find some way you can take control of your symptoms soon.

[ohdearherewegoagain in reply to ChrissieMons]

It is defiitely asthma and I take vitamin k2 for bones. I am not in pain so pain management would not make sense. Also I am virtually housebond with no transport and working fulltime from home. so go here and there is often totally impractical.

[Wheezycat]

Hi! You have flagged up quite a few things, and I am not attempting to respond to them all, just the bit about oral thrush. Just to say that when I was Ona Brown inhaler (Clenil Modulite) I never got oral thrush, but since I have been on Symbicort, stronger stuff, I do get it from time to time, and regardless of how much I rinse etc it does come back sooner or later, much like athletes foot, another fungal infection, tends to do with me. I am still pretty careful to do the re ommended rinsing, but I always have oral Daktarin on standby for when it flares up. It seems to deal with it pretty efficiently.

I, too, have been on oral steroids, but unlike you though it deals with the inflammation issue just then, it does not leave me more comfortable, notably as it stops me sleeping, so I am glad every day I don't need to take them. I am 69 by the way.

[Spikedog66]

A year to see a chest consultant is really poor you having a rough time aren't you. Have you had bloods tests? I was similar to you and wanted to throw the towel in on many occasions. I kept insisting that the symptoms were not all due to my chest and it took a long time for someone to listen or even care but bloods showed b12 difficency for which I have 3 monthly injections and do feel better with this. Maybe there is something else underlying with you too.

If you have a chest nurse at the surgery make an appointment to see them they might help more as that is their speciality and most do listen. Don't take steroids long term you will get osteoporosis I have had broken leg and ankle recently due to steroid inhalers so please be careful. Take fluconasole for trush £5 at pharmacy I tend to brush teeth and use mouthwash after inhalers via spacer and still get it bad but get a few weeks of relief with this. Plod on you will get there unfortunately it takes time and a few battles to get there.😊

[ohdearherewegoagain in reply to Spikedog66]

Thank you very much for your response and input. I put a lot of time into researching these thngs so I knew about spacers, side effects and the usual stuff. I had already asked my doctor to check for vitamin b12 deficiency and the blood test said it was fine. I had gone through everything possible with the doctor and the consultant was a last resort.I have read h ere and there that using mouthwash can lead to fungal infections, so try to avoid it. I received a letter from the consultant today telling me that as I have a struggle with the inhalers he wants me teo try a tablet, montelukast 10 mg, every night, so will try that. I think a lot of the problem is that when I use INHALERS I get fungal infections, and this gives me some of the the horrid side effects. I take vitamin k and vitamin d to ensure that my bones are alright, all of these side effects they say you can get from oral tablets you can get from inhalers too, and I try to prevent things. Hope you are doing alright at the moment and thanks again.

[BarrieB]

It’s dangerous to compare horror illnesses, we’re all different after all. But I had some of the same issues and it took a long time to sort it out. My general weakness and general feeble feeling was ultimately caused by a lung infection that was only susceptible to one specific antibiotic. Took a while to discover this after many courses of treatment that just did not work. The infections themselves were caused by bronchiectasis (late diagnosis via CT scan). No cure for this just constant need to clear the lungs. Active Breathing Control was recommended on a daily basis but this just irritated my throat. I now get by with coughing and clearing when I need to. I just disappear into the bathroom and hawk up. Nasty but essential and you can keep an eye on the colour. This is vital to see up coming infections. Transparent and pale yellow is fine. Any thing else needs further treatment and/or antibiotics which I have with me at home for self-medication. They really need to produce a colour chart for phlegm!

Not sure this helps except to share the misery. Keep pestering the experts. You have a choice of consultants. Seek out the lung expert that is closest. I use Somerset Lung Centre, Dr Stone who got to the bottom of my problems. You shouldn’t have to suffer but keep an open mind. You can scare yourself with all sorts by using the internet. It just might be something you haven’t researched yet.

[Spikedog66 in reply to BarrieB]

Wouldn't dream of sharing horror stories re illness but sometime you try anything or listen to suggestions or research for a bit peace in your life sorry my comments offended you in some way.

[BarrieB in reply to Spikedog66]

Sorry if I seemed offended. I'm not. We're all in this together and sometimes (quite often actually) sharing helps. Funny the way the words sometimes don't come out the way you want without the visuals. I feel genuinely sorry that the original poster seems to have been mucked about a bit more than usual.

[Spikedog66]

You seem to have tried most options hope the tablets are your answer and you feel better soon😊

[ohdearherewegoagain]

thank you so much and hope you are well too

[Triggerina]

I have not had the issues with steroid inhalers you have had. However ,I take Montelukast and find that I need a lot less inhaled steroid when on them. They do take a few weeks to work. Stick with them and hopefully it will be worth it!

[ohdearherewegoagain in reply to Triggerina]

Hi again Triggerina. Have been on montelukast for about two weeks now and they are helping. but my memory and concentration are awful , making it impossible for me to my work. I will see how it goes , if it improves and have to stop taking it if it does not.

[ohdearherewegoagain]

thank you for that triggerina, that is very helpful. god bless