I know I don't post much on here, but I do read lots of your posts and you're all so helpful, so I'm just after advice please. Long post though, sorry 😊
So, I am on Fostair 200/6 2 puffs bd, Spiriva Respimat 2 puffs om, Ventolin prn (but needing at least 6 puffs a day at the minute, usually more, due to the storms, weather heat, humidity, etc), ventolin nebs prn, uniphyllin 300mg bd, montelukast 1 nocte, fexo 180mg 1om, omeprazole 20mg om or bd, cyanocobalamin 50mcg bd, amitriptyline 10mg nocte and quinine 200mg nocte. I have been on daily pred since June last year and had managed to get it down to 25mg daily, but due to flare ups the last couple of weeks I am back up to 40mg daily. I also have VCD (diagnosed Feb this year after broncoscopy and awaiting first appt with SALT team).
I am under the severe asthma clinic at my local hospital.
My asthma is steadily getting worse. I have had to leave my job in pharmacy as I kept having flare ups and attacks resulting in A+E visits. My ability to do much of anything is negligible at the minute as I just get out of breath so quickly. I even have to lie down after a shower sometimes as I get out of puff. I can't walk any great distance without getting out of puff.
I had a telephone consult with my hospital consultant last month which I didn't really think was that great. He asked me loads of questionnaire questions and I tried to explain how my quality of life has been impacted. All he did was say to increase my uniphyllin to 300mg bd which I have done, but doesn't seem to be making much difference.
Now I have received a copy of his letter following the appt and I'm just feeling a bit lost. The letter states I scored high on my ACQ? and EQ-5D? whatever that means. He says that long term management of my asthma is a major issue (which it is), but that this is rather than acute exacerbations. He says that he will see me again in 6 months!!! I can't keep going on like this for 6 months with no idea of a long term plan, or treatment. The thing is I am still having acute exacerbations quite often......hence the neb at home. But I feel like because I'm not attending A+E (because I worry about covid and also they just give me the same treatment, ie nebs) that I am being penalised. I don't want to waste NHS resources going to A+E if I can try and manage it at home, but then obviously there is no record of an exacerbation/attack as I haven't attended a+e 😏.
I just feel like I'm being left to muddle through on my own, making it up as I go along.
I am concerned about the side effects from the preds and potential AI, but at the minute, I can't reduce the dose. I have tried over the last few days but have had to put them back up.
My chest constantly feels heavy, like I have an elephant sat on it. I'm tired ALL the time. Then obviously it tightens up and I get SOB and cough. My SATS drop at night to anything about 91 to 94, but then are ok again the next morning at 97. My PF is generally OK (doesn't really drop much during an attack either).
I guess I just don't know what to do. I'm going to write to him saying that I can't wait 6 months and I need a plan going forward, but I just wondered if there was anything else you guys could suggest please? Do I just stop using my neb at home and keep going to A+E? But then isn't that just a waste ?
I just don't know. I just feel lost.
So sorry for the essay.
Thank you, Michelle xx
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Ghoulette
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Hi Ghoulette, I am so sorry you are in this mess. I’m afraid I can’t be much help to you re:meds, but I’m sure there will be someone who will come along with more knowledge than me.
What I can tell you is that I am also under a hospital consultant for my care. I have only seen him twice in the 15 months I have been under his care.
However, the hospital runs a chest clinic run by specialist respiratory nurses. Initially I had appointments every 6 weeks, the it dropped to 3 months and now back up to every 6 weeks. (Asthma not very well controlled at the moment.)
It might be worth ringing to see if the same system operates at your hospital.
Nurses are able to prescribe and change meds, run tests etc.
Sorry to hear you're struggling so much and had to leave your job! That sounds really tough, and it's really hard to be in 'limbo' where you're struggling but not quite acute, and the neb helps each time so you can't be escalated but you keep needing it.
ACQ is a questionnaire for asthma control (higher score means worse control) and EQ-5D is about general health status (again higher score means poorer health). It isn't surprising you're not scoring well on either from what you describe, but it's a shame they don't seem keen to do much - maybe highlight your scores when you contact the consultant, and the fact you had to leave work.
I appreciate the difficulty when you're not having 'official' flare-ups as it can often be overlooked; however, starting or increasing pred is often used to indicate a flare-up too and can be used as an 'official' marker for clinical trials or when assessing someone for biologic drugs (Xolair, Nucala etc). I would emphasise the level of pred you are on, how often you have to increase and what happens when you try to decrease when you contact your consultant again - it's not ideal at all to need that much as you say, and it is something they should pay attention to. I would also point out that you were landing in A&E a lot while working. You probably still would be going more if you hadn't stopped working, but I agree it can be hard to communicate that not landing in hospital is 'only if I do nothing much and don't work' - you need to emphasise that's not really a viable solution!
Do you have any kind of 'rules' for nebs? eg if you have 2 or more in x hours/2 back to back etc you have to go to hosp/call the clinic etc? I appreciate it's really frustrating to go and just get more nebs, but if you have rules like this then sticking to them strictly may help to show the issue, as well as being safer. You shouldn't be thinking of it as wasting NHS resources - it is completely legitimate to get help in this situation. Also re COVID - not sure what your experience has been but I and others have been several times and admitted and I do feel like they are on top of that, plus there are way fewer cases now.
Many people don't have home nebs precisely because they're not meant to sit at home avoiding hospital, so you definitely shouldn't overuse them to avoid going when you need it. If they're not for maintenance (and if prn then yours are not) then you shouldn't be needing them as much as you do, and you shouldn't be expected to rely on them - however I feel there's a danger that some hosps get into a habit of 'well they can use nebs at home' instead of trying to fix the issue of why you need them.
Even if you don't have official 'rules' for nebs perhaps make your own (eg no more than x or I go to hosp/go if x doesn't help) - and if they do help, keep telling your team when you need them, so they're aware. I get into a kind of 'limbo' at times where I need nebs but not bad enough yet for hospital, but I always tell my team (asthma nurse contact and they put it in records) if I have needed them more than a one-off. This is so they know I am responsible (they should know when I need them and so should your team), but also to remind them I am still here and having a flare so it can be recorded, even if they can't do anything at that point. You should tell them every time you need nebs or more pred/can't reduce, even if they don't do much, so they have you on their radar as someone who is very poorly controlled (and also just because they need to know).
Has your consultant mentioned anything about biologic drugs at all? Even testing for them (IgE, eosinophils)? That can be tricky with steroids as they reduce eosinophil count, but if they think you might be eligible it's even more important to make sure your flares are recorded. Is it something you could ask the cons about exploring?
Also you mention sats dropping at night; would it be worth asking about a sleep study, to see if anything is going on as well as asthma at night that you could address (eg sleep apnoea)? Or if asthma is really affecting sleep (sounds like it may be) then that could perhaps be noted officially even if nothing else is going on.
Regarding peak flow - mine doesn't drop as much as it 'should' either but it is responsive to inhaler/nebs unless I'm really struggling. Do you find yours responds well to the nebs even if the numbers are generally 'ok' before? It may be worth doing some pre-post readings to show that you are responding well. You may already know all this but EmmaF91's peak flow post may possibly be useful: healthunlocked.com/asthmauk...
I think it would probably also be useful to give the Asthma UK nurses a call and just chat through all this - they may have suggestions and ideas that haven't been covered (they're the professionals!) and might have some tips on how to approach your consultant. AUK helpline is 0300 2225800 M-F 9-5 and AUK WhatsApp is the same hours - 07378 606728.
I've done a bit of an essay in return but I hope this helps! And hope you get somewhere/find some solutions.
EDIT: just seen Troilus's reply and agree - most of my contact is with the asthma nurses and they have a 'hot clinic' where you can be seen - this may be worth a try. Do you have a number for them?
Thank you so much for your reply. So much useful info 🥰.
My GP says if I need more than 2 nebs then I am to go to hospital......and I try to stick to it, but was just worried re covid, but if it seems to have settled then I will stick to this more rigidly. They never keep me in after A+E because they know i have a neb at home and they just tell me to go back to them if I need to.
It's so frustrating as I've literally just cleaned the cats litter tray and am now SOB and tight chested. I think I might give the GP ring as I have chest wall pain on my rhs for last couple of days too that isn't easing, and they did say to ring if i needed advice 😏.
I will suggest all those things you have mentioned in my letter abd I will see about a hot clinic. Can the asthma nurses at the hospital alter meds?
I have no eosinophils (had bloods done last month) and I'm not sure if I would qualify for injections but it is something I am going to ask about.
COVID should not be keeping you from hospital - and I would say the same even if it were April! I get it's scary (I wasn't sure how they'd handle it) but asthma can be dangerous too and needs attention. As well as lower cases now and them being ok to handle it in general (ie they're not going to just expose you even if you are 'suspect COVID), they now have better, quicker tests being rolled out so you can often be 'cleared' quite quickly and put with non-COVID patients. (Plus I think increasingly they are beginning to think asthma, even severe asthma, is not the major COVID risk they thought it was at the start of the year).
I definitely think you should be sticking to your GP's rules on this, for all the reasons I've mentioned above. Though I appreciate it is difficult when A&E doesn't understand what the nebs are for - ie not for replacing proper treatment. Perhaps you could try phrasing it as you have nebs for 'emergency use' and therefore don't/can't use them regularly; if you need them it's a sign things are worse?
Not sure if you have a summary for when you go to A&E but it can be really useful - I use one to cover how I present (no wheeze, best PF but it's not reliable for how I am, what meds I'm on, and what has helped before which really helps, and I hand it over as early as possible now). You could put on this that you use 'emergency nebs' and what your rules are. EmmaF91 has a great one which is available as a template if you ask her: healthunlocked.com/asthmauk...
Re the asthma nurses - yes they should be able to alter meds (they can often prescribe), advise on pred etc. If they do want cons input they can ask the cons without you needing to see him. They can't directly prescribe the biologics I don't think but they can certainly discuss them with you and whether you might be a candidate; mine were always on the lookout for eosinophils and working out ways to find them with biologics in mind! (They didn't find them, but they were always more sure that they would than I was. I don't have that kind of asthma but then I also don't really respond to pred, which can be a big flag for not being suitable for current biologics - they are mostly targeted at types of asthma that do respond to pred. You seem to respond to pred so it's worth pursuing).
Thank you. I have Emma's template with me permanently 😁. I will ring the hospital to see if i can get to speak with the asthma nurses.
I have had a telephone consult this afternoon with my GP and she is querying chest infection/pleuritus/pleurisy, so she has px me co-amoxiclav and arranging a chest xray. If I am no better by Friday, I am to ring them back (although she says they will probably send me up to the hospital), or if I get worse, then I'm to attend hospital anyway.
Once again, thank you so much for your help and advice xx
Hi Michelle. I’m new on here and you seem to be having a similar experience to me so thanks for sharing. I’ve found some useful tips in the responses.
I actually queried vcd with my GP today because I’ve had poorly controlled asthma with return to good function for a couple of weeks after a course of pred and then a decline again.
I think they might look to add in Spiriva whilst I wait to see the chest specialist.
It’s also good to see that there are others who don’t seem to have much change in peak flow. I felt a little like I was wasting the paramedics time recently when I have good sats and not much drop in peak flow.
It seems cough variant asthma perhaps doesn’t get the best recognition.
Thank you Kirsty. I'm glad you got some help from the replies too 🙂. It's frustrating when you don't present as a 'typical' asthma patient at A+E (even though there's no such thing 😏) and get fobbed off. I hope they investigate VCD for you and you start to get some plan in place and find treatment that works for you xx
Hi. I'm under the severe asthma clinic at my local hospital but haven't yet been assessed for biologics. It is something I am going to raise with my consultant. I don't know if I am eligible but I will ask them. Thank you xx
All the commenters have given such good advice already, I don't have much to add, I just wanted to say I'm sorry this has taken up so much of your life and been so exhausting and hard to deal with. It's really challenging to take that many meds and to try to do everything right and still feel miserable. And quite scary to worry you're falling between the cracks of the medical system and not getting seen often enough.
I have a chronic illness book that asks you to draw out bubbles for ten parts of your personality with the size of each bubble corresponding to how big a part of your personality it is (with instructions to include your illness). So mine were friend, wife, cook, reader, writer, all sorts of things and my asthma bubble was very tiny because I don't think of it as having much to do with my personality. But the size it takes up in my real life is often way bigger than any of those things, if that makes sense.
It was an interesting way for me to think about it and hard to realize how much of my life my severe asthma / allergies / adrenal insufficiency from too much prednisone etc. can take up in spite of how little it has to do with my identity.
Per Lysistrata's point, I've had a good experience with biologics--I'm on Omalizumab (Xolair) and it's helped reduce my need to take prednisone.
Thank you so much. The book sounds really interesting, what is it called please?
I really don't like being on the preds, but i understand that it's either that or not being able to breathe at the minute, but i just really want to be able to come off them. I hate the side effects and am concerned about developing AI with long term usage.
I'm glad that the biologics are working for you xx
Yes, I never even knew AI was a thing until I developed it! Now I have to take 20 mg of hydrocortisone a day for life :/ Doctors should really warn patients about this when they're on prednisone for long periods. None of my GPs or pulmonologist ever mentioned in spite of treating me with it for years and years.
Someone on here called them the devil's candy and I liked that. They do help you breathe at the end of the day but the side effects are so intense!
Hi I'm also new to this but read lots and am learning lots from peoples posts they're helping without even knowing!! 🙂😉. So I'm not much use to you but I only know my experience was only referred to respiratory nov after struggling few years and on max meds gp can prescribe. Anyway I see consultant every 6 weeks then covid hit but he has rang me twice to check in (which I thought was good) last month had my first virtual appointment with a respiratory nurse which was really good she changed meds we chatted for over an hour.
Inbetween I ring respiratory nurses for advice as I've been struggling all year and they ring back within 24hrs and contact consultant etc an form plans. Last week I had to attend respiratory hot clinic for chest xray and bloods as emergency so a new plan of action devised I was reacting to antihistamine. (Trust me) consultant meant to be calling me this fri to check how things are after taking my case to urgent mdt again to start biologics.
I have severe uncontrolled allergic asthma and esophillic asthma which I only found out during lockdown and am still trying to understand it all. But I think its why I'm not responding to any treatment other than prednisolone ☹ and why I'm exhausted all the time and so short of breathe.
I've not checked my sats at night but I would think you need a sleep study for sleep apnea maybe? I'm so sorry you've had to give up work in a pharmacy ☹ does your consultant know this? I'm struggling with work big time not sure how much longer I can do it. I never realised what an emotional rollercoaster this would be feeling like your quality of life is reducing drastically.
My respiratory nurse did say to me( as I dont attend hospital when I should ) that each time you increase rescue meds or in your case nebs just inform gp so they have a record. Which I guess makes sense instead of trying to just manage it all yourself at home. Also ask about respiratory nurses clinic. During lockdown I wouldn't have managed without them. Others will have much better advice than me, sorry if I've repeated not had chance to read everyone's as at work. Lol. But do get in touch with respiratory team they need to listen to you and now not 6 months. You need a clear plan a and b. X🙂
Thank you. It's an absolute minefield isn't it? And a steep learning curve. I have never spoken to the asthma nurses at my clinic so I am going to try and get in gouvh with them xxx
Hi Michelle, It sounds like you are having a really tough time. As this is quite complex, why not ring our helpline on 03002225800 and speak to one of our friendly expert nurses
As mentioned by many responders u certainly need acute expert care in the meantime to control ur asthma flare up, but I note that u are keeping cats in ur house, which is definitely an asthma trigger. Is it possible to make ur living environment free of cats or other asthma triggers? I think it would be useful to ur asthma control.....
Thankfully cats and dogs aren't a trigger for me. Horses are, but i think that is more to do with the hay, straw and threshing on their coat rather than their fur or dander. I had skin allergy tests when I was little, so I remember some of what I an allergic too 😊🥰.
I'm sorry, I'm new to all this so I don't really have any advice, but I just wanted to say that sounds rubbish & I really feel for you. I hope you get some more help & support soon. Best wishes X
I suggest that you ring your consultant secretary up tell her your seeing whatever you consultant name is amdyou are haveing problems with your asthma (don't worry about it do it if i have problems) she'll have a word with either your consulant, a member of his team or one of the specialist Respiratory nurses and get back to you either an appointment or what was suggested. OK
Ring your gp ask for an urgent appointment tell your asthma is very bad and you need to see someone urgently.
If you do get very bad get an ambulance out they can check you out and decide if you need to go up or get intouch out of hrs GP/urgent care.
You've also got a back up with Asthma uk nurses as well.
How are things now? who prescribed the nebuliser? Usually doctors are reluctant to prescribe it. Perhaps speak to the asthma uk nurses on the helpline they are great. I've only just seen your post I hope things are better now.
I bought my own after I checked with my GP that he would be happy to prescribe the nebules to go in it. I was having too many attacks that just appeared out of nowhere 😒 To be fair, I would have been in real trouble without it.
Still awaiting my next clinic appointment 😏.
SATS still dropping at night (90%-94%). Peak flow is a bit temperamental (up and down). Chest still constantly heavy, although you kind of get used to the feeling so it almost becomes normal I guess 😏
Have attended a+e a couple of times, but at least I felt safe in there.
Just continuing to muddle through till my next appointment.
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