Advice on next steps

[Princessconswayla]

Hello everyone,

I've been suffering with uncontrolled asthma for almost 6 months (every day problems as well as 4 attacks) and I'm awaiting a hospital consultant phone call which has been put back twice already.

I take fostair 200/6, montelukast and a large amount of blue inhaler at the moment. The gp say they cannot do any more for me because of what I am on, that's why I have been referred.

My question is, have any of you been in the same place.. what am I looking at to be the next steps in medication?

I've had the antibodies test for COVID and it was clear, same as a chest x ray, so I know it is purely my asthma.

The struggle has been overwhelming, I really hope they can get my medication right.

Thank you in advance. X

[Troilus]

I was in the same position when I was first diagnosed. The respiratory clinic at the hospital added Spivira Respimat and later on Montelukast, both of which have helped.

Of course we are all different, but the two medications I have mentioned are quite commonly used, if members here are anything to go by.

Has your GP prescribed you prednisone after your attacks?

If you have any peak flow readings have them handy when the consultant rings. Mine likes numbers!

Try not to get too despondent, things will get better.

[Princessconswayla in reply to Troilus]

Thanks for your reply Trolius,

That's interesting, I have been given two courses of prednisone after two of the attacks, I've been keeping a peak flow and symptoms diary, I'm due to have the telephone call tomorrow afternoon.

I really hope it can be sorted out, thank you again for your reply

[twinkly29]

Negative antibody test doesn't mean you haven't had covid (if you have it could be partly post viral issues) - just that your body didn't produce antibodies if you did have it or was too long ago.

However, that aside (sounds like doctors don't think you did have it anyway), as Troilus says your peak flow and symptom stuff will be useful to the consultant. They may arrange some tests and/or try new medications. There is plenty they can do on top of what you're already on - as you have discovered, it's just that the GP can't do any more at the moment. It may be something simple makes a big difference and control returns. So try not to worry - it should be a helpful and positive thing. Easier said than done I know.

[Princessconswayla in reply to twinkly29]

Hello twinkly29, thank you for your reply.

They did leave it 4 months after I was poorly to do the antibodies test, so I guess it's not as reliable. I think it was a really bad chest infection if I'm honest.

Its reassuring for me to hear that there is a lot more that can be done via the hospital, yes I agree that sometimes the smallest contribution can have a big affect, hopefully that will be the case for me. It is so draining every day struggling!

I already feel more positive so thank you

[twinkly29 in reply to Princessconswayla]

I hope you don't have to wait too much longer now.

[Junglechicken]

Just wanted to say I know exactly how you feel. It’s terrifying when your not really sure what’s happening to your body. There are some other options out there, meds wise that you can try but you can discuss those with your med team. It’s hard to stay strong but you can do it!

Asthma UK have a brilliant helpline. The nurses will support you in what ever way you need regarding your asthma, whether that be advice about med, symptoms etc or just how to cope mentally with what is happening.

[Princessconswayla in reply to Junglechicken]

Thank you so much, I really appreciate that!

[Nifflerluck]

Hi, I have been a similar situation during lockdown, was in A&E twice in March and had multiple flare ups. Im on fostair 200/6 , 4 puffs a day and montelukast and was using ventolin daily just couldn't get it to settle, had 3 courses of Pred, 1 course antibiotics and GP referred me to hospital as said they couldn't do anymore and asked respiratory team for advice while they waited for my appointment and they advised to do bloods to check for allergies and to put me on Spiriva. Didnt have the bloods done yet went onto Spiriva and been alot better since then. Hope they manage to get you sorted.

[Princessconswayla in reply to Nifflerluck]

Our stories are so similar! I'm sorry you've had to struggle but I'm so glad that the spiriva is helping! I hope they get it 100% sorted for you

[Nifflerluck in reply to Princessconswayla]

I really hope they manage to get things sorted for you as well and that things start to improve. Let us know how you get on when you speak to consultant .

[mylungshateme]

Aww please don't panic there is more that can be added or tweaked.

Completely agree with twinkly29, troilus and junglechicken. Gp's are general practitioners so cover lots of things but not specialists so they have there template on things like asthma then when they've exhausted all avenues they refer you to respiratory team.

I know how you feel I too am struggling and just exhausted from it all lol. But this platform is fantastic for advice, and just to talk to other people that understand and at different parts of the asthma journey. I have and am learning lots from everyone on here.

Depending if your an allergic person they may look at antihistamines, nasal sprays, different inhalers or tweak doses. Either way it's very positive your now under a respiratory team. So rather than think your at the end of the path your at the beginning. 🙂 I hope this helps and let us know how appointment goes.

[Princessconswayla in reply to mylungshateme]

Thank you so much for your reply, just from hearing everyone's feed back it gives me positivity and reassurance that things will hopefully get better soon! I hope you feel much better soon too

[Claire-Rose]

Sorry to hear you are going through a bad time, asthma is one of those things that can take a while to control by changing medications to suit you and once they work you will feel a lot better, they might add another inhaler called spiriva which it’s amazing since being on their I don’t use my blue inhaler as much. If you are still struggling to keep it under control they will do some blood tests to see if your body is producing too much of either Eosinophils( a type of white blood cell) or ige (something your body makes during an allergic reaction) and if they are raised they can cause asthma to become worse but don’t worry there is available treatment to help that too. There is so many drugs now available so hopefully soon you will start to feel better

[Princessconswayla in reply to Claire-Rose]

Thank you for your reply.

I really appreciate it!

[Princessconswayla]

I spoke to the respiratory team today and the woman said she will organise bloods and breathing tests, in the mean time she wants to try me on flutiform ? Or a powdered inhaler, I'm assuming she will write to my gp with what one she has chosen. I guess we will wait and see

[Claire-Rose in reply to Princessconswayla]

I have been on both flutiform and I think the powdered one is Symbicort but I could be worst they are both really good inhalers unfortunately they didn’t work for me but that doesn’t mean they won’t for you. Good luck

[EmmaF91 Community Ambassador in reply to Princessconswayla]

Glad you managed to speak to someone! As the others have said there are still more drug options out there - the only issue will be finding the right combo for you to get control back! Hope the fluitform helps you! Good luck, and as others have said if you want to talk it through with anyone just give AUK a call. They are fab!