I sometimes think I have two different types of asthma. I have two inhalers alvesco and fostair mart plus spiriva.
This year half way through the winter they put my alvesco up to Alvesco 640, and it has worked really well, getting me off my winter prednisone on and off cycle.
Then immediately the pollen levels rise my Asthma worsens sharply, and the alvesco is no longer a life saver, instead it feels like my fostair 100 mart is the most important inhaler.
The whole behaviour of my winter asthma and my spring asthma seems different and needs to be controlled differently.
Do other people get this.
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Homely2
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I'm on alvesco,fostair + salbutamol inhalers,along with various other treatments.late autumn,winters hard,then pollen season starts.im on fenofexadine all year round but as pollens rise,I take otc antihistamine too+ use my air purifiers more.i think of medications,inhalers,techniques etc as tools in the box..I'm grateful to have a variety 🤟🫁🧳.x
I think this is more common than is acknowledged. I know several people with severe asthma who have an allergic side and an eosinophilic side.
I'm pretty sure mine has two types as well - an eosinophilic side which is a little more under control and a non-eosinophilic side that isn't. Sometimes both will go off but the non-eos side causes me more trouble and doesn't respond to oral steroids. I also have hayfever and I'm never sure if this affects my asthma or not.
Unfortunately, my consultant and asthma team are only interested in the eosinophilic side so will only look at markers for that. Which are generally ok because that side is, for me, not the main issue. For others it's most of their asthma.
Just for anyone reading as I think this is often explained really badly: eosinophilic asthma just means that the twitchy, liable to close up airways part (the end result) is driven by a type of blood cell called an eosinophil that is causing inflammation in the airways and leading them to become twitchy.
It's not automatically more severe than other types, but it can seem that way because most of the biologic drugs for severe asthma are for severe *eosinophilic* asthma, and most people only find out that's what they have when they are assessed for severe asthma and possibly to get biologics.
You can have severe (and non-severe) *non-eosinophilic* asthma (and there's more than one type of non-eosinophilic) but it's less well understood than eosinophilic and allergic types and often seems to get less focus as a result. I have met very few medics who seem to understand or even want to understand non-eosinophilic asthma, and unfortunately some of them buy into the idea it's not as serious.
Totally agree Lysistrata. I have a type of non-eosinophilic asthma, doesn't respond to Prednisolone and can be a pain to control, especially when my lung MAIT cells are low, leading to infections (MAIT cell numbers are affected by inhaled steroids, so vicious circle). However, I also have Aspirin Exacerbated Respiratory Disease and that is driven by eosinophils and a myriad of food/drink triggers. In addition, I have allergies to dust mites, pet hair/dander etc.
So on the one hand, I've been fortunate to have these diagnosed (by accident, a research programme and ye olde skin prick tests), but seeing a variety of consultants over the years hasn't led to a targeted treatment plan as they each have their own specialism and interests and like to impose their treatment ideas on the patient.
My luckiest break came in the form of a research project and because I was considered unique, was invited to take part. Suddenly being transported into a type of private members club, with regular appointments at my convenience and informative chats with the project nurse made it a great experience. Had a long appointment with the research consultant at the end of the project and learned more about my asthma than in 5 decades. However, subsequent appointments at the same respiratory clinic with other consultants and I'm back to the usual unhelpful treadmill.
I think one of the most irritating concept that doctors have, is the patient isn't taking their asthma meds, as prescribed, and that's why their asthma isn't controlled. I've lost count of the times a doctor has told me that "unless you take your steroid inhaler regularly, your asthma will play up". Anyway, that's my moan over for today. 😄
Imposing ideas on the patient and assuming non-adherence is the issue, yep.
The second part especially drives me nuts (well both do really, because I'm not a nail just because they have a hammer). I understand they have to check if people are taking medications but don't just assume!! And if someone really isn't then it's considered best practice to find out WHY they aren't. Is it because it doesn't work for them, because no one has explained why they need to take it, they're getting side effects etc?
One asthma nurse at the hospital literally just does basic GP asthma nurse stuff, badly, every time I see her. 'Are you taking your preventer?' etc. Which one, I have four? And why am I bothering with this if you don't ever listen to me or offer any specialised advice? I could do this online or with an HCA down the road at my GP.
I wanted to get onto a clinical trial recently for a non-eosinophilic asthma drug. I think it would have improved my care and they would have actually understood non-eos. Sadly they never got back to me after looking at my medical records with permission. I think I didn't pass the safety screening because my asthma is badly behaved and causes tachycardia when it flares.
That's so disappointing re the clinical trial! Pesky safety screening. I know I couldn't take part in one because I live on my own and that was a risk for that particular trial.
I've even been asked to take part in one for eosinophilic asthma treatment because they were short on candidates. Another time, while queuing at my GP' surgery to check in, a hospital asthma nurse pounced when she saw me as she was going around all the GP surgeries in a recruitment drive for another trial. But at least she recognised my unsuitability without any prompt from me, which was impressive, she actually remembered that I was non-eosinophilic.
I've had researchers on the phone and I've suggested that they use this asthma forum to advertise their trials etc as they can have trouble getting the requisite number of candidates. People would jump at the chance of trying biologics and discovering more about their asthma.
I occasionally have a look at the hospital's respiratory research pages online to see what trials are upcoming, just in case there's something interesting to me.
The approach to medication adherence definitely needs looking at, as you say, understanding that there will be a percentage of patients who have negative experiences with meds and this too can contribute to building a picture of a patient's asthma. Square pegs, round holes, bash, bash, seems to be the approach of many doctors. Little explanation or discussion. So many times I've felt invisible, sat in front of a consultant. I think I'm moderately OK when it comes to advocating for myself, but that confidence has been sorely tested by hospital consultants.
I must admit I find talking to my hospital consultant difficult. When I talk to my hospital asthma nurse it is a two way communication.
The consultant kicks off by asking how you are, he then reveals the edited details of the most recent testing, and the next step. But it is definitely not a two way communication.
My GP asthma nurse says I need to ask my primary question immediately I go in, so next time I will try that as an approach.
It is so irritating when doctors think you have not been taking medication just because the right medication has not been given. This has happened to me on several occasions. Why on earth would anyone choose to suffocate?
Yes, I find that antihistamines don’t work for me, and steroids weren’t the answer (beclomethasone, fluticasone) - I used to get bronchitis up to 3 times a year, in late Spring, Autumn and Winter, before I was treated with Sodium Cromoglycate, in the late ‘70’s/early 80’s. I then volunteered in a research project on ‘atopy’ in the skin allergy tests, being carried out in our Pharmacology Department. One part involved comparing the skin reaction to saline (negative control), histamine (positive control) and one’s allergen (grass pollen, in my case), alone, and then in the presence of Platelet Activating Factor (PAF) administered WITH the control and ‘test’ (allergen) via intradermal injection. The reactions were monitored immediately after injection, then at 30, 60, 120, 180 minutes, by recording diameter of the redness and swelling. We were asked to make a further recording after 4-8hours, to monitor the late inflammatory reaction, by drawing around the inflamed area. Imagine my surprise when, 8 hours after the test injections, the histamine + PAF injection site was about 2-3 cms across, but the grass pollen + PAF site swelling had grown to cover 3/4 of my lower arm, which my husband helped me to record onto a sheet of cling film wrapped around my arm!!!
The researcher was hugely impressed, but no one else in her study had produced that large an increase in inflammation to their ‘allergen of choice’, and I heard nothing more🙁 afterwards. My reaction to grass pollen alone had been only 3-5cm diameter, for comparison, so PAF was definitely an important factor in my Delayed Hypersensitivity type II reaction to grass pollen.
Access to diagnostic testing is so important when traditional meds aren't working. So have there been any advances in treatment for you or are you still prescribed Sodium Cromoglycate?
Sodium Cromoglycate no longer available in the UK, except as (2%(w/v) eyedrops). It has been 'de-listed' by MHRA and NICE, as 'not a treatment for asthma', even though I am one of a small subgroup of the (atopic) allergic population, for whom it works really well - they say that is 'just anecdotal'. It is in some Over-The-Counter hayfever eyedrops, which very many people find effective. I now have to buy it as the nasal spray, Nasalcrom®, from USA, and inhale it via a 'mesh' nebuliser, as the alternative antihistamines and steroids don't work sufficiently to prevent me having bronchitis 2-3 times per year.
I respect your tenacity at accessing treatment that works. I trust your doctor is supportive and understands your predicament.
I used to have Intal as a child, it was the "new kid on the block" in terms of treatment in the second half of the 1960s, but I progressed to a steroid inhaler in my teens.
Apparently discontinued as no manufacturer found who could reformulate Intal to a chlorofluorocarbon-free or hydrofluoroalkane (HFA) propellant formulation. I suppose it wasn't cost effective, despite it being a necessary treatment. But from memory, my Intal was a dry powder spinhaler. I see that Intal is available in the US and Canada as a nebulised treatment. Crazy that it's not available in Europe. This is where NHS procurement falls down.
yes, my GP and, eventually, my asthma specialist, did concede that Sodium Cromoglycate seemed to work well for me, even though it was 'not an asthma treatment', but were reluctant to support me in trying to persuade NICE (and Sanofi, who were manufacturing it for eyedrops) to make it available to me/re-list it, because I was using it (and had been for years) in a non-standard/non-approved way, and it would not be cost-effective, since it was no longer recommended for asthma treatment. The only explanation that I could find, for its de-listing by MHRA and NICE, was that Intal® used an environment-damaging propellant, for which there was no available alternative. However, I read that an alternative 'dry powder' inhaler device was being developed, in 2021 - but I don't know whether this is being developed for other inhaled medications, just that the cost:benefit evaluation concluded that it was uneconomical to continue to produce Sodium Cromoglycate in an inhaled form.
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