What treatments or tests from here?

[netochka]

So I am 40 and since having my second child in September I have had 3 exacerbations (also 1 bad one in pregnancy). I was sent to ambulatory care today as I am on day 10 taking 40mg pred a day, and still acutely ill.

I was on Fostair 200/6 and am now trialling Seretide 50/500 to see if it gives better control.

Asthma is noneosinophilic, not allergic, cough variant (GP writes 'barking with stridor'), with peak flow varying between 230 and 450 on any given day. It rarely goes to bacterial pneumonia, usually sticks at viral bronchitis.

Assuming I don't get better control with high-dose ICS + LABA, what are the options for me? Any suggestions as to how to understand what is wrong and fix it?

Thanks in advance for sharing your knowledge.

[netochka]

Bumping in case it helps get replies.

[jabber]

This must be so worrying for you, especially with a baby to care for. I'm sorry I don't have any answers for you, but I'd suggest you telephone the Asthma UK helpline (0300 222 5800) and speak to one of their nurses. I'm sure they'd have some good advice for you.

I do hope you get some useful answers and feel much better soon.

Best wishes, Jan

[netochka in reply to jabber]

Thanks, Jan

[Smoggy1990Boggy in reply to netochka]

I agree give the nurses at Asthma UK a phone call they are really knowledgeable and friendly. The helpline is open Monday to Friday 9-5. 03002225800

[hb1977]

Hi, I'm in a similar position having just had my second exacerbation since October. I'm non-eosinophilic too. Currently on Seretide plus Spiriva. If you are not already receiving consultant care then I'd definitely be asking for a referral, also the asthma UK nurses are absolutely amazing so really worth giving them a call!

[netochka in reply to hb1977]

Thank you and sorry you are having issues too.

Ambulatory have referred me back to consultant again, which is good because I did ask GP about Spiriva and she wasn't confident to prescribe it for asthma. I definitely want to try it as I read noneosinophilic doesn't always respond well to steroids (and that is where we are).

But you are finding the tiotropium isn't a magic bullet? Have you been on it long?

[Smoggy1990Boggy in reply to netochka]

I have been on Tiotropium 18mcg for 6 years now and have found it really easy to use. It was prescribed by my consultant and although not licensed in this format for asthma I think it’s really effective.

[netochka in reply to Smoggy1990Boggy]

Oh that sounds great! Has it improved your control a lot?

[hb1977 in reply to netochka]

Hi

I’ve been on it since about 2016.

It certainly helped me in that my lung function improved and between June 17 and October 18 I had absolutely no exacerbations; my worst trigger is infections, and is the only time I really have exacerbations...this winter has been tough!

I have been on Montelukast but asked to stop it as I’m non eosinophillic; it’s frustrating because it certainly feels like there are far fewer options for us.

[netochka in reply to hb1977]

Wow, no exacerbations at all in that time!! And now this winter has been disappointing 😔

I also get exacerbations almost exclusively from infections, usually just a cold. But when put from Fostair 100 to Fostair 200 it did feel more stable for a little while.

[hb1977 in reply to netochka]

I've tried Fostair and certainly like the idea that the particles are smaller but it seemed to give me horrendous cramps so I went back to Seretide.

[Js706]

Hi

Sorry to hear you’re having problems! It’s stressful at the best of times, let alone with a baby to look after!

Have you had any tests so far? I’m assuming some allergy tests and eosinophil levels as you know you don’t have those types of asthma. But what about things like spirometry or metacholine challenges? Also are you under your GP or have you been referred to hospital?

Also is it just fostair and seretide you’ve tried so far? If so, there are options like montelukast or theophylline. Which are both tablets. They may not go for montelukast as it’s normally used in allergic asthma more. And some drs aren’t overly keen on theophylline as it’s quite old and some people have quite bad side effects from it, but I’ve found it really helpful! There is also the option of adding on an additional inhaler like spireva, which has a different mechanism to ICS+LABA and works really well for some asthmatics (it’s a long acting version of the ipratropium you can get in nebulisers).

Hope this gives you some ideas and reassures you that there are still plenty of things to try!

[netochka in reply to Js706]

Thanks for taking time to reply with some thoughts

I am being referred back to consultant care now as GP has exhausted options. I hope it isn't too long to wait as I hoping to try the Spiriva Respimat you mentioned.

I did have a year of Montelukast and sadly it didn't help. I just looked up theophylline and that sounds quite a tough one. I can see why it might be a last resort drug.

I was screened for bronchiectasis 2 years ago and the ct was consistent with just asthma. No irreversible narrowing either.

Do you have experience of nonallergic asthma too? It seems less well understood.

[Js706 in reply to netochka]

No worries, fingers crossed it isn't too long a wait as consultants have access to lots more tests and treatments! Spireva Respimat is normally a pretty good bet for asthmatics and a lot of people try it - I've been taken on and off it a couple of times but think I'm going to ask to go back on at my next appointment as my control has gotten worse since they last stopped it!

That's a shame about the montelukast But at least you've tried it. To be honest I love theophylline, I know some people feel pretty rough on it but I've never had any side effects from it and it was probably the first thing I went on that had a significant impact on my control.

That's good about the CT as that's another test they would also do in hospital

My asthma is at least partly allergic (so I'm on the biological therapy xolair for this part) and part...something that they're trying to figure out!

I might see if I can put out the asthmatic "bat signal" and summon Lysistrata here as she has non-eosinophilic and non-allergic asthma and is very experienced! She might have some additional thoughts.

[netochka in reply to Js706]

Thank you, js! And that's good to know theophylline can be effective and not too hard on the body.

[Lysistrata Administrator Community Ambassador in reply to Js706]

Hi! I don't think the bat signal worked as I only saw this from reading but I love the idea (please can I have a cape? )

Anyway...like Js706 says I do have non-eosinophilic and non-allergic

which is not too well behaved but there are some things which help.

This sounds really tough to deal with looking after a baby too - no personal experience but I've heard that's full on and I know asthma can be! I have also heard pregnancy can make some people's asthma worse (your immune system is doing some different stuff to avoid attacking the baby) so I'm wondering if that might have been a trigger for you. Did you ever find when you weren't pregnant that you got worse around that time of the month? How was your first pregnancy asthmawise (since you mention this was your second)? Not my experience again but it might be worth asking about/flaggin up if you get to see someone.

I've seen some others say they went off montelukast as non-allergic/non-eosinophilic. I am on it - been on and off a couple of times for those reasons but it was the first thing I tried that helped me and I would say it still does a bit even though less than before. It is also for exercise-induced asthma and I do feel my exercise tolerance is better with it and I can do more day to day so I have asked to keep it. So maybe still one to consider - I was told it doesn't have many side effects for most people so worth a go.

I was also scared re theophylline when I first went on it as I'd heard all about the side effects but actually it's been great for me and I've not had any. I know some people can't tolerate it or need a different dose but with non-eosinophilic I do think it's worth asking about. I persuaded my consultant who wanted to take me off due to potential side effects that it helped, and he and the registrar did agree that it's not as though it has potential long term side effects like pred if you take it all the time.

I'm also on the Spiriva Respimat and find it good. A note that this version is licensed for asthma but the Handihaler is not. I was on the Handihaler and it did nothing. I thought the Respimat did nothing either and asked to come off but thankfully no one listened, since when my GP surgery messed up and I missed a day or two I did notice! I think it is technique dependent so if you do get it ask for a demo of how to use and make sure you're taking it right.

I hope all this is helpful. I completely agree with others who have said to call the AUK nurses -they are very experienced and friendly and can talk you through the options including referral if needed.

[haggisplant in reply to Lysistrata]

Hi, just sort of following/ piggy backing this conversation as I think I’m in a very similar boat. Will do a separate post soon.

[netochka in reply to haggisplant]

Welcome haggisplant, and please share your experiences too if you want! Ideas or a rant, all welcome.

[netochka in reply to Lysistrata]

Lysistrata thank you for all this detail. It's great to know how all these things are working out for someone else.

[netochka]

It is so helpful to hear from others and have invisible colleagues in asthma!

Wishing us all a pred-free healthy existence.