I'm a lifelong asthmatic (42 now), had plenty of A&E visits as a child before my asthma stabilised as I got older. Then in my early twenties it got worse, I was put on Seretide and things improved. But I found if I went on hot foreign holidays my asthma got worse. Then found the same thing happening in summers in the UK, meaning taking Pred is a yearly occurrence for me in the summer, often 2-3 courses in June-July for the past 10 years. I was diagnosed with severe asthma in 2014 at another hospital. I take Seretide 500 twice a day and Montelukast. Last bad flare up was Sept-Nov when my asthma just wouldn't settle and ended up on 3 courses of steroids again.
Now my respiratory team wants to reduce my Seretide 500 twice a day to once a day. This is based on the fact that I've had two reversibility tests in two years and the reduction wasn't sufficient to count as asthma. I was tried on Xolair in 2021 and had no response. They refused to see me during my Sept flare-up saying I should see my GP and it couldn't be asthma as my PF wasn't dropping (bear in mind this a regional severe asthma service...)
Obviously I'm concerned that they are going off test results rather than my flare-ups. I've ended up with adrenal insufficiency due to my steroid use - currently trying to wean off - and this itself has had a massive impact on my life. I know it's likely I will need steroids again in the future without some type of biologic therapy. My eosinophil count has been a bit raised during flare-ups (0.3) but not enough it seems to warrant any further therapy.
I am really frustrated as the letters from the hospital in the last few months have veered from "no evidence of asthma" to "no evidence of severe asthma". I have an appointment in a few weeks with the consultant. When I asked him last time what it was if not asthma and he said "anxiety" which made me angry as I've had anxiety in the past and I know the difference. Why would anxiety would only flare up during high pollen/hot weather/foreign climbs?! I am feeling fobbed off because I don't fit into their box of what asthma is. Does anyone know of any other tests I can get to prove to them what is going on? my PF doesn't drop that much either so that's no help. FEV1 is usually early 80% range. the cool weather means I haven't had any steroids so far even though I've had times where I've used extra Salbutamol
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Well you can either take their advice and drop your dosage, up it again if need be, or ask for another opinion? 🤔
LysistrataAdministratorCommunity Ambassador• in reply tofraid
Sounds so easy put like that, but not necessarily an easy decision in reality. I've been there and it's often very hard to know what to do, especially when you should be able to trust the 'experts' but feel they're not really paying attention and give odd advice. And realistically, when you aren't getting anywhere with a specialist service it's hard to know where to turn. They're not identical even if they are all specialist services and they can sometimes be great for certain kinds of severe asthmatics but less so for others. Some are more willing to listen and seem to be more familiar with actual biologics requirements and less rigid than others. The trick is how to work that out and know what the options are, which is often much harder than it should be.
Seems perfectly reasonable for someone to come on here and ask when they're not sure how to proceed with what can be a difficult decision. Anxiety as an explanation for everything from the consultant is honestly a bit of a copout in this situation and in my experience often used when they're not making much effort to engage or listen to the situation.
ccccc, 0.3 plus 4 or more exacerbations requiring oral steroids in the last year *is* enough for at least some biologics targeting eosinophils. It's just within range but it is enough. See here for Fasenra: nice.org.uk/guidance/ta565/... or Nucala nice.org.uk/guidance/ta671/... (bear in mind they say it differently as 300 cells/microlitre but it's just how the lab expresses it.) The level of eosinophils you need to qualify for asthma biologics is not the same as the level where the lab will flag it as 'raised eosinophils'.
I'd suggest you chat all this through with the helpline nurses. 0300 2225800 or WhatsApp on 07999 377 775 Monday-Friday 0915-5pm. If you do qualify for biologics and they're putting obstacles in your way that aren't required, the nurses can advise you on how to proceed - I know they've helped others in similar situations.
Either way it is up to the patient to make the choice, if there is one. Only you know how things affect you, sadly the 'experts' rarely have personal experience and cannot know you feel. I have always had to rely on what works for me best, we are all different!
P
LysistrataAdministratorCommunity Ambassador• in reply tofraid
That's true, but to make the choice you need to know what the pros and cons actually are and have accurate, helpful information to base it on - and ideally, for it not to be something you can't change if it doesn't work out (my godmother is considering this in the context of her cancer drugs, and if she stops she may not be able to restart). I don't necessarily know how something will affect me always or what the longer-term outcomes might be. Providing that information in context is what specialists should be offering, in an ideal world (which this particular area definitely isn't).
But realistically they often try to make the decision for you based on information that is not necessarily accurate, and they can make life very, very difficult or just override you if you say no to what they want, even though it's supposed to be patient choice. This is also why it's helpful to have people who know how the system works.
Even if they do have personal experience, it's definitely not a given that it will help anyway. I had a consultant who thought having asthma could trump all the many things she didn't actually know about asthma as a condition and all the bad advice she gave me. It didn't, but it also didn't matter what I wanted to do or what I thought, she realistically held the cards. I had no idea how to handle that and I didn't handle it well.
I've made a lot of mistakes in my time with my asthma care because I was left to make choices on my own with no help and no useful input, or had choices forced on me with no way to actually push back.
I'm afraid in my case I have nil support so just muddle through, do what suits me best. I don't know if it depends on the area you're in but down here care is scant and arbitrary, just as well I'm not severe, though same with my other health issues. 🤷♀️
LysistrataAdministratorCommunity Ambassador• in reply tofraid
I'm in an area with plenty of supposed options. However, I don't personally have much support for my asthma either as my team is all about what they think should be the case and not the real world. And being atypical doesn't help.
I try to do what I can to help point people to more support, though I know realistically it will often be difficult given the system. I have seen some people on here get through to their teams eventually in a similar situation to this.
Just a quick question, with my repeat prescription Flixotide they sent a card saying I was on steroids which must not suddenly be stopped. Never had one before, also told amount of steroid that gets into blood stream is miniscule. I know long term steroids can cause major problems so am I heading for more damage? Not so quick after all, sorry. 🤭Thanks.
LysistrataAdministratorCommunity Ambassador• in reply tofraid
I think they're meant to be handing them out with higher doses of inhaled steroid as a precaution, though it seems to be hit and miss whether they do. Some does get into the bloodstream with higher dose inhaled steroids, but it is small.
I think the card is for emergency situations so that you can be supported if necessary with extra steroids and they know to not suddenly withdraw the amount your body is used to. This is the ALUK guidance in case it's useful: asthmaandlung.org.uk/sympto...
As with anything like this, it's a balance - you still get way less steroid with inhaled vs oral steroids, and controlling asthma with inhaled steroids means a much lower chance of needing oral steroids for flares.
As ever if you have further questions or want to talk it through with a healthcare professional, I suggest the nurse helpline: 0300 2225800 or WhatsApp on 07999 377 775 Monday-Friday 0915-5pm
Following my asthma review at gp surgery it was suggested I reduce my preventative dose from inhaler. This was because my asthma is really behaving well these days. I pointed out that when I get bad, I get really bad extremely quickly and even a simple cold can trigger it. I said “if it isn’t broke…..” and she agreed so will stay on same dose.
Maybe if you clearly state your reasons they will listen to you?
When my last eosonophils test fell from its normal levels to 0.38 rather than 0.4 which is my hospitals cutoff for asthma, my new consultant queried my asthma diagnosis.
He sent me for a bronchial challenge test, methacholine or mannitol, where they try to make your asthma worse. Unfortunately they made me wait in a dusty waiting room, so when they did the test, my lungs were just starting to be unhappy, before they even gave me the provoking stuff, so I had a very positive result for very severe asthma.
So have a read up on bronchial challenge tests for asthma and ask the asthma UK nurses about them. For some people they are not suitable, but for some they are.
Have you seen a respiratory nurse yet, I found mine really helpful. She helped me understand the difference between asthma attacks and other things that made me breathless.
Ugh that makes me really question how hospitals/trusts are allowed to set these limits, which are not in line with NICE recommendations for biologics or asthma guidelines more generally.
Also this absolutely enrages me on another level that they are using any eosinophil cutoff to determine whether someone has asthma!!!! Because 1) not all asthma is eosinophilic and 2) one of the definitions of severe asthma is that it would become uncontrolled if you are taken off your medication (above a certain level). This makes me wonder if they give people biologics then test them again, find they have low eosinophil counts, say they can't have asthma/don't need biologics and take them off biologics???
I know you know the problems with this Homely2 but honestly, this is so infuriating. Also seems really silly to leave you in a room filled with a common asthma trigger to wait for a challenge test, for many reasons. Not least because another outcome could have been that you became too unwell to take the test, or that you were triggered enough to not get much of a drop in spirometry because you were bad to start with, so looked like you didn't have asthma.
It does show that challenge tests are probably quite dependent on the day you do them, but they seem to not understand that. And I keep seeing examples of hospitals using them to determine whether biologics should be given, when that ISN'T required by NICE.
I completely agree. I am also now on a long waiting list for histamine challenge, despite meeting criteria for biologics. Reversibility showed asthma but not enough reversibility apparently. I am now worried that the consultant could also try to interfere with the amount of preventer and medication I am using. Yet my asthma is not well controlled and using reliever every day / waking at night. My asthma nurse doesn’t want to change my preventer whilst I’m part way through my referral to respiratory which is understanding . I have a good relationship with my gp/ asthma nurse , so really do hope that the consultant doesn’t have the power to override their decisions or try to remove any of my medication. I have very little trust / faith in the respiratory department at the hospital. My experience so far has been very negative / stressful. A long with a secretary who is rude and condescending! Sorry for the rant
very sorry to hear this in. In my experience being referred to the hospital / professor / consultants this year , they have been very negative , interrogating and not very understanding, causing extra anxiety on top of a stressful situation caused by the asthma we deal with! I suspect this is due to money saving and our struggling NHS. This is all new territory for me , so I am unable to offer advice. However, it is my understanding that we are in joint care between primary and secondary care with our GP / hospital. So if I were you, I would go back to your GP and asthma nurse to discuss this. In my experience, they seem to be a bit more understanding and helpful. I don’t think the consultant should be able to have a final say on the amount of preventers you use - especially as you’re no longer on biologics. Dealing with a difficult consultant seems unhelpful .
I’ve also heard that we have a legal right to chose / second opinions. I also understand that these proffessors which high level of knowledge may lack some social and personal skills! Such an annoying system isn’t it!
P.s completely relate with peak flow as mine changes very little but I have lots of flare ups and struggles with constant asthma every day and night due to allergies. Yet normal spirometry test results . The consultants need to understand that asthma is variable and tests while we are feeling well , doesn’t reflect the problems we are dealing with. I hope you can make progress with them. If not then perhaps trying a different consultant or hospital might be an option as well as discussing your preventer dosage with your asthma nurse? Good luck
I had a bronchoscopy a few years ago and they said everything was ok but found a small patch of bronchospasm at the bottom of one of my lungs. So I think that drives my asthma and also that's why I do ok on the other tests - because the healthy part of my lungs is carrying me through. Maybe it's something similar with you? I do agree it's seems to be about saving money, they had no qualms about giving me loads of steroids which have caused other health issues!
I'd keep a diary day yo day of peak flow,any symptoms or not,inhalers,steroid use etc .u can download a peak flow chart.Also if you have any questions or points u want to discuss with them,take a list of bullet points as it does help to get best frm appointment
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