Late onset asthma diagnosed 9 months ago.( age 71)
Managed fine on clenil modulate x 2 daily and ventolin when needed. ( rarely)
OK until a ‘head cold ‘ last month became tracheitis, needed oral antibiotics and prednisone course at OOH emergency care for paroxysmal coughing/ choking episode at night ( very scary)
I am seeing community pharmacist for review tomorrow ( no asthma nurse clinic available)
Advised to download asthma apps first.
Do I need stronger daily medication or just an emergency plan for ie chest infections/ tracheitis?
The emergency plan would I assume be my own prednisilone and or antibiotics supply?
I ask because in my pre telephone interview I was also asked to download RB ( right breathe) app as there are so many inhalers to choose from. The pharmacist seemed uncertain what to advise and asked what I would like.
My concern is I’m overwhelmed and have no idea what I need? My concern is that although I would like to participate in my asthma plan, I would also like a medical and knowledgeable person to tell me what I need. How do I negotiate this?
Help please?
Written by
Charente
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Hello Charente - that doesn’t sound very helpful at all! In your position I too would be hoping for some medical knowledge input, how are you supposed to know what you need?!
I’d suggest that you phone the Forum’s Helpline Team to chat through your questions and see if they can advise you and help out in advance of your review today.
The team can be reached on 0300 222 5800 (M-F, 9.15 -5) for more personalised advice. You can also chat with our asthma nurse team via WhatsApp on 07378 606 728(M-F, 9.15 5)
Also agreeing with Beech to call the helpline. You should absolutely be a partner in your own care and be able to say what you want from your treatment. But the professionals need to actually discuss with you what's needed in your situation and what the options are before you do that. How else would you know what's most appropriate for you at this point and be able to choose?
Like you I kicked off my journey with the blue inhaler, then they added the brown. All of which helped hugely.
Learning to use a spacer effectively helped a lot. Spacers are available on prescription.
Having my own peak flow meter helped, available on prescription. Take it twice a day for a while, at the same time. and you will get to correlate the readings to how you are.
Learning how to inhale properly also helped, asthma UK has videos online for this. My hospital asthma nurse taught me.
The asthma nurse gave me an asthma plan which you should ask for, this tells you what to do in different circumstances. Ask for this.
After clenil I was given fostair 100 for my long term, with the blue inhaler for short term issues. There is though lots of choice,though I was just given fostair, no discussion. Took a couple of months to get used to it.
Go through all this with one of the asthma UK nurses on their helpline.
I would push for a conversation with a specialist. I'm waiting for a call from the local pharmacists so you could ask one of them in the meantime. Shocking they are aksing you to choose! Check out good breathing techniques also on the NHS website. My asthma nurse shared this with me. Buteyko breathing and working on gently low stomach relaxed breathing rather than throat and high up breathing. Learning to nose breath and not mouth breath has also helped me loads but I got medical advice and help to learn this.
Have you seen anyone face to face? I was diagnosed over a year ago, but it wasn't until I had a face to face meeting with the asthma nurse that my asthma began to get properly under control. I'd suggest calling the helpline to talk through your concerns (they've been brilliant every time I rang them, especially when I couldn't get to see anyone at my surgery) and depending on what they say, maybe then ask for a asthma care review with your practice nurse .
If your "normally fine" with clenil its probably a case of knowing what to do when .....
Which a good well written action plan will give you
But the next step up from clenil (and the least harshest jump) is fostair its the same steroid as clenil but much finer and it has the LABA (Long Acting Beta Agonist) Formoterol ( Ventolin is a SABA Short Acting Beta Agonist)
If you do need to change preventer Fostair would normally be the next logical choice for most
But did you know you can updose on your clenil? (The maximum is 8 puffs a day) .. so it was probably worth taking more of this when things started going south........most doctors don't/won't tell you this until after the fact....which should be written in a "well written action plan"
I'm also sick of getting told "you can't really overdose on ventolin/salbutamol"... meaning the worst that happens is your heart rate goes through the roof and you feel dizzy... it also fades after a few hours.... a better outcome over not being able to breathe
An alarming amount of people think you can only take 2 puffs every 4 hours because that's what the box says
But likewise you also shouldn't be needing ventolin all the time and taking lots of it is a sign you need something else, except when your unwell and then it's "ok,for a while"
A lot is self management.read up on " controlled breathing" techniques too.its literally a godsend whn struggle to breathe.tspn honey or glycerine is gd to coat yr throat whn its irritated. I also gargle mouthwash or water.just being still,sat calming yr breathing with techniques, really does help.have u downloaded+ researched the recommended apps
See for me being sat calm and still is actually the worst thing I can do...... I Have EDAC (Excessive Dynamic Airway Collapse) so my airways are quite literally held open by the air I breathe in but that also means that coughing actually doesn't help clear things but make them worse
So I need to stay as mobile as possible to keep any mucus/secretions as mobile as possible in the hopes they will end up somewhere they can be coughed up
Also the breathing exercises they tell most people to do "huffing" actually Is a big no no with this condition
I've severe edac+ severe tracheobronchomalacia among many other airway+ lung probs .when my airways collapse,literally,I can't move about - controlled breathing,keeping still+ relaxed is the ONLY reason i stay alive + get through.ive severe bronchiectasis + severe asthma, so have lot of mucous,I use huffing+ techniques to get it up.its about focusing,relaxing&coping
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