Autism met Asthma

Hi, I get anxiety as part of my autism. I am finding it really difficult to express the symptoms I am getting. I can see my peak flow is dropping but when I express it to the asthma nurse she is just passing it away as though nothing is wrong. I know from having asthma for years than when your peak flow gets to a certain level you need to increase your preventer. I am being told I cannot increase my preventer as it is not licensed to be increased. Yet if it is not licensed to be increased what on earth do I increase? I am on relvar 184 one puff each morning and montelukast one tablet each evening. Why are asthmatics been put on preventers that cannot be increased during a flare up? What we meant to do flare up and ride it out with no treatment?! It is like all the things we learnt as a child have now been scrapped for none increaseable once a day medications.

[tk11]

I take flutiform inhaler night and morning, also take montelukast at night.

Ventolin is my saviour when I have problems.

Speak to your asthma nurse she will advise you.

[Js706]

I’ve been told I can use my salbutamol regularly 4 times a day (a bit like a neb in hospital) which sometimes helps keep me more stable.

[Hidden]

See I used to be on salbutamol ten puff every hour and now I am not in a pattern I am lost.

[Wheezycat]

If you get anxious and feel not heard, and especially if that seems a regular thing for you, is there not anyone you could take with you for support? Or could you write down in advance what your concerns are, like you have done here, and let the gp/nurse read them? I know others on here do that for those moments when they end up in a&e. It matters you get what you need, even if it is different from before.

[Hidden in reply to Wheezycat]

I have tried writing it down. I am still working on finding a person to go with me. I would love to take someone from my care agency but rotas seem to prevent this but I will keep working on it.

[Wheezycat in reply to Hidden]

I am glad to hear! I, too, can find it difficult, because I don’t trust myself to recognise what is going on with me. Luckily I have a couple of friends, one especially, who does not hesitate to tell me when she notices something that is not as it should be. For that I am grateful. Pity about the care agency. I do wish you all success in finding a solution.

[Paradigm]

Hi, my area doesn't increase preventers in flare ups due to a lack of evidence it works.

Instead they prescribe short bursts of Prednisolone.

I also have autism and find it hard to express my medical difficulties

[Hidden in reply to Paradigm]

Thank you for your reply.

[Pipsqueak77]

Hi

I am sorry that the nurse won’t listen to you... I think that we all get flustered when trying to explain how asthma feels sometimes..and certainly some nurses aren’t good at listening..

However I wondered whether you are under a resp cons or hospital team for your asthma?

The reason I ask is that I take 2 x doses a day of Relvar 182 which was prescribed by my cons. We both understand that this is a high (unlicensed) dose but the alternative is maintenance pred which I want to avoid at all costs.

So it is possible to up the dose of your inhaler but you may need to push for a referral or speak to your hosp team ( if you have one..)

So you can go a little bit more armed to your nurse next time!

Try and get a referral...

Best of luck.. fingers x😊

Pipsqueak