Asthma still not controlled on highest steroid dose, what next ?

[LRLR]

Hi just wondering if anyone else has had experience in this situation.

Due to stepping down steroid inhaler, Asthma became uncontrolled gradually over the last 6 months which ended up in asthma attack from a chest infection. This was 6 weeks ago. I was given 5 days of steroids and my Alvesco inhaler put up to the maximum dose of 640mg a day as well as given Spiriva respimat.

I feel worried as It has been 6 weeks and I whilst my peak flow has returned to green zone, I am still not controlled- reacting to dust, my cats fur (this never happens when I’m controlled) unable to jog or run without being short of breath. Needing a lot of blue inhaler on the evening and morning 2-4 times a week. Peak flow has improved and now always between 88-95% even when I’m short of breath so not a helpful graph to show doctors. No wheeze. I do not know what type of asthma I have as this has not yet been confirmed but clearly have allergy triggers.

Is it normal to take more than 6 weeks on a higher dose to become controlled again?

I now take; montelukast, fexofenadine, formterol powder inhaler, 640mg alvesco circlesonide and spiriva respirat.

it seems I’m having the maximum of what I can have so what could be the next steps from here medication wise?

could it be alvesco not working and need to change to another inhaler? (Was previously on fostair but this caused thrush so changed to alvesco)

just feeling fed up like I’ll never get back to normal and not sure what to do next.

Thanks for taking time to read!

[Patk1]

Were u better controlled on fostair?it also contains a LABA( long acting bronchodilater - formeterol).Yr lungs may have preferred that.id contact yr asthma nurse. U can avoid thrush, or reduce it, by using a spacer+ rinsing mouth after using inhaler...Ive just reread+ see Yr on formeterol powder inhaler - were u on that previously? U could speak to aluk helpline mon- Fri 9-5 on 0300 222 5800

[LRLR in reply to Patk1]

hi thanks for your reply.

I was on fostair 200 with spacer for about 3 years and asthma did become controlled, however it eventually gave me thrush even though I do salt rinses, rinse /change spacer , up to date with dental appointments ect. Dentists and gp have all confirmed it’s the fostair causing ongoing or returning thrush even when taking anti fungal tablets. Also had topical treatments gel and mouthwash which only half got rid of it then it would return.

Changed to alvesco inhaler as this is meant to not turn into a steroid until it hits the lungs so less chance of thrush in mouth. Have to take powder formeterol with it seperatly as no spray form for that available. Could it be this combination just isn’t working as much? I thought all inhalers would work the same if given the right dosage. Or maybe my asthma has just got worse.

Thanks for your help

[Patk1 in reply to LRLR]

No they don't all work the same.sometimes lungs prefer a certain format.have they tried u on fostair 100 to see if thrush was less of a prob.

[LRLR in reply to Patk1]

I didn’t realise this thanks for this info. Yes I did step down to fostair 100 Mart and it reduced thrush a bit, but became not as well controlled and found the extra puffs needed in the day was giving me more thrush again.

[Patk1 in reply to LRLR]

There are a lot of inhalers to choose from,so don't think this is it.id speak to Yr nurse/gp see what they suggest x

[ReedB]

Hi, it can take a long time to recover from an attack especially if you're still regularly coming into contact with triggers. Allergens, cold air etc. I usually need more than 5 days of pred to calm things down. If you're still struggling then it wouldn't hurt to go back to the GP to be sure. I have tried many inhalers and found the Fostair 100/6 mart the best. The 200/6 also caused me thrush problems. I find the mart gives me more flexibility taking either 1-2 puffs or up to 8 a day when needed.

[Homely2 Administrator]

I am on alvesco 640 at present, also with fostair 100 mart, spiriva and salamol.

I like the fostair 100 mart a lot as it gives me something I can vary, while alvesco gives me a constant base layer of steroid. I am also at present need a five day prednisone course every six weeks. Though hopefully not this month as I seem to be under control.

I would struggle without the fostair mart, so you have my sympathy.

I want long term to be on biologics and to try tezspire. However my consultant is very much a high eosonophil and high feno man, so dislikes my Asthma, as I am neither, and my Asthma is highly variable.

With me my hospital asthma nurse is very good and can talk to my consultant when she wishes. So is my best bet for varying my inhalers, as she has the ideas.

Re maximum dosages that is something my consultant seems to have some flexibility on.

I would ring the asthma UK helpline on 0300 2225800, office hours, to get some ideas on what to do, then contact your most helpful medic to try to enact it.

[LRLR in reply to Homely2]

Hello homely 2, sorry I know this is an old post but hope you don’t mind me asking a question.

You shared how you take alvesco 640mg and have fostair 100 too. Does this mean you have to take a minimum dose of fostair daily to get the formeterol ? Then if you get short of breath you may have more fostair when needed?

I am thinking if this would be a good thing for me to ask for. If so then would I stop the powdered separate formoterol and get this element from the fostair?

I’m on week 8 now of new higher dose and added in spirivia but still needing lots of blue inhaler.

Doctor has given me a 5 day course of pred as they didn’t know what else to do until I see consultant in few weeks.

[Homely2 Administrator in reply to LRLR]

Interesting question. I have been told different things.

In the summer, my Asthma was partly under control, with two or three attacks a week, I was on alvesco 320 plus fostair mart. My consultant told me, in writing, to wean down and to go on alvesco 320 and no minimum dose of fostair, just to take as needed, he called it AIR therapy. This went very badly wrong for me and I ended up on repeated prednisone, my GP nurse said you cannot do fostair 100 mart, without a minimum dose.

My hospital asthma nurse now has me on alvesco 640 and has said I have to have a minimum dose of fostair as well for my fostair mart to be effective. This is working for me and when I up the fostair it works and stops my Asthma accumulating.

I see the consultant in March and will get an answer, but for me, for fostair mart to work, I have to take a minimum dose of fostair each day.

[Lysistrata Administrator Community Ambassador]

I would definitely call the helpline as Patk1 and Homely2 have suggested, as they have the time and expertise to chat things through and can suggest some things you may be able to bring to your GP. It could be time for a referral if you're on max medication, have given it a while and still struggling.

Some people's peak flow just doesn't always drop neatly, which can be tricky when some healthcare professionals are very focused on it. However, I'm also wondering:

1) is that 88-95% of your personal best or your predicted? Do you know your personal best when you've been really well and your asthma was controlled? I'm saying this because my actual best (630) is way higher than predicted (450)(I put it down to playing the oboe and singing for years as a child/teenager. A friend who was a competitive gymnast at similar ages also has a much better than predicted personal best.)

I have severe poorly controlled asthma - I can get to that best number if I take readings regularly and make a point of doing it when I'm well, or post-treatment. But it's not nearly as common as it should be. I resist people trying to use my 'normal' or predicted instead of my best because I know I can do better than I might get on an average day when things are playing up.

2) It might be that after struggling for a while, your personal best that's being used has actually dropped because you're never able to get up to the levels you were at before. So you might actually be capable of a higher level but you can't currently get there at the moment even though it's better than it was and it could be making your peak flow look better than it is.

[runcyclexcski in reply to Lysistrata]

***I resist people trying to use my 'normal' or predicted instead of my best because I know I can do better than I might get on an average day when things are playing up.

My asthma has been mostly OK since the automun started, and I am back to my "normal" peak flow of 850. Such readings do not exist on my allergist's reference table, and my nurse's eyes turn round when I hand her the PF meter back. She keeps asking to repeat, as if I did a trick on her. No problemo. Even when I am sick I am still off her scale.

[LRLR in reply to Lysistrata]

Thanks for all this advice and info. I am already under consultant but not seen them for two years and they admitted I got lost in the system. , however have appointment middle of February.

I also have quite high best peak flow which is 580 so I read that as my 100%, but Ive only achived this once in last 5 weeks on a clear day of symptoms. When I’m controlled I can hit that most days. When my peak flow was 80-85% a few weeks ago, I was really unwel but this is still called green zone and GP happy with those readings but did accept I still had symptoms, just not conecerend over readings.

I’ve since come up to between 88-95% but this is still not green zone for me! Still unable to exercise fully and reacting to things getting short of breath.

Maybe my green zone is 96% and up!

When my king function tests were done at the hospital they all come back normal, I was well controlled then but not sure of this is why.

[Lysistrata Administrator Community Ambassador in reply to LRLR]

If you were well controlled when you did lung function tests they're likely to be all normal - that's one aim of control.

I hope your appointment is useful - maybe worth ringing the helpline before you go just to make sure you get the most from it as they can advise on what to ask.

[LRLR in reply to Lysistrata]

Arr I didn’t realise that! This is adult onset asthma so when I became controlled and then passed all lung tests, I almost thought I’d imagined it all or that it was a fuss over nothing. Now I’ve become uncontrolled again I realise I didn’t and this is very real!

Thank you yes I will ring up , there’s such a lot to know and learn.

Thanks everyone much appreciated x

[Lysistrata Administrator Community Ambassador in reply to LRLR]

They often don't tell you that! I think too many healthcare professionals get confused between asthma and COPD and forget asthma is variable.

It's normal for the numbers to look good when someone with asthma is controlled. And as above, peak flow is a tricky thing that should be taken in context (but isn't always).

You haven't asked but in case you do - it's also normal to have good oxygen saturation even when you're having a flare. Again, not always understood by everyone in relation to asthma.

[runcyclexcski]

In my experience, the next steps (in the order of difficulty to implement) if inhaled steroids do not work are:

-- try same steroid, but higher dose;

-- try another inhaled steroid;

-- oral steroids;

-- biologics (at least 5 options);

-- desensitization injections, for instance, against the cat allergen.

-- extreme home allergen control (no upholstery, not carpets, no pets).

Asthma can get worse/new triggers can develop. Even though I love cats, and I am not allergic to them (lived with them as a kid and part-time as an adult in the past), I now would never get a cat. B.c. I can develop the new allergy, and then the doctor will recommend the cat to go.

[LRLR in reply to runcyclexcski]

thanks for the next steps break down really useful!

[tazjosie]

Go back to foster and use an aero chamber plus for your inhalers that will stop the thrush. I hope that helps. That's what I use, and I use 2x2 daily. No thrush. Foster 100/600 asthma is now under control.

[LRLR in reply to tazjosie]

thank you, glad your asthma is now under control.

I do have the aero chamber plus and rinse it out every week. I used to scrub it with a bottle brush and washing up liquid and the Gp told me not to do this as it takes off the coating! So I have stopped doing that now and just rinse it and naturally dry it once a week, and change for a new one once a month. However I still got returning thrush even when on anti fungal medicine . This went on for about two to three years and is still happening even now on the alvesco which I wonder if that’s because I have to take 8 puffs a day.

Tried stepping down to fostair 100 from 200 but wasn’t as well controlled. I wonder if could ask consultant if stepping down to 100 but with the spirvia as well would supplement the lower fostair dose?

Thanks for your advice x

[tazjosie in reply to LRLR]

I have just been changed to the Fostair NEXThailer 200/6. This is a trial to see if it better controls my asthma, as I have been having problems, and to see if I get any side effects.

[Bigoil]

Has GP ever suggested that you go on montelukast?

[LRLR in reply to Bigoil]

Hi thank you yes I’m already on montelukast and fexofenadine find it really helpful and feel the difference if it don’t take either of them.

I was also on nasal sprays as hay fever is big trigger for me in summer, and tried all different types and had a great technique but they kept triggering head pressure , head ache and migraine so can’t tolerate them.

[Bigoil]

Next step is biologics but you need 3 severe attacks needing prednisolone in a year and elevated eosinophils. Ask GP for a referral to see a doctor at a tertiary hospital (there are only 13 in England). Mine is Southampton and they are amazing and cover the south.

[LRLR in reply to Bigoil]

That’s interesting thankyou for that. I am naively only just hearing about these biologicics.

May I ask, what constitutes as an asthma attack ? This is something I have always been confused about. I understand what a severe attack is ( my last one couldn’t speak had wheeze and during chest infection needed 20 puffs.)

However if I am short of breath / coughing and need 6-8 puffs to breathe properly again is that an attack?

Or if I’m exercising and can’t get my breath back needing to sit down heavily panting and use 6-8 puffs until I’m ok, is that an attack?

Obviously they are not severe attacks but not sure what they are classed as! lol

Thankyou

[Bigoil]

The NHS categorise a severe attack as below 50% on peak flow which is what tends to hospitalise me but there are other criteria such as the inability to speak which needs salbutamol and doesn't improve with 10 puffs. Obviously mild and moderate need less.So what you described are probably mild attacks as they can be controlled by less but there isn't really a guide book for severe asthmatics. Hence the need for a specialist consultant in an asthma department not a GP or respiratory consultant.

[LRLR in reply to Bigoil]

May I ask does a consultant in a respiratory department at the hospital count as an asthma consultant? Or are the asthma consultants only in tertiary care?

I am under the respiratory department in hospital at present my go refresher me a few years ago.

[LRLR]

Thankyou for that really helpful. I’ve probably been having mild attacks quite often and not realising it.

[Bigoil]

You will only find the open minded ones in tertiary care. In the district hospitals they will be good but you need the best.

[LRLR in reply to Bigoil]

That’s interesting I did not know about this.

Thanks for all the advice and replies. I will bring these things up next month with my consultant and check the options. Appreciate your time x