I joined Health Unlocked some time ago because I suffered from Polymyalgia Rheumatica and needed advice. It's a nasty auto immune condition that can be managed with steroids. I am one of the lucky people to make a recovery after 2 years.
Now, I'm getting on happily with life when I notice that what seemed to be annual mild hay fever seems to be going out of control. I'm getting breathing problems and coughing until I gag. My GP practice is pretty good and reacted quickly. I had a Covid test- negative. Antibiotics and chest X Ray, again all clear. I started with a blue inhaler, which gives some relief. I've now been given the brown inhaler, 4 puffs a day, and I'm not sure how much it's helping. My peak flow is rubbish- 250 at best and 180 when I feel terrible.
I'm finding this so frightening. The symptoms kicked off mid July and without warning or any noticeable trigger ( bit late for pollen as explanation). I've always been one of those people that sail through coughs and colds without major chest problems. I'm 67, slim and, despite a walking difficulty, keep fit.
I'm going back to the GP in 3 weeks but what's best to do next. I don't think the symptoms are under control. 2 years on Prednisolone steroids caused me stomach problems and I don't want to go back on those. Tips, advice or virtual hug welcome, even tell me to get a grip and carry on.
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Downbytheriverside
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Hi there Downbytheriverside. So sorry you have started experiencing breathing problems, just when things were getting better for you.
Can I just say before I answer you, my knowledge of asthma just comes from my own experiences ad Dr Google!
I am a few years younger than you and my predicted peak flow is 388. ( I’m 5 ft 7 ins. Not bragging, but height is taken into account when they calculate predicted values. The taller you are the higher they are. I would have the lung capacity of a 20 year old if I was 3 foot 6 😁)
Based on my predicted scores, I would say that your peak flows are too low to be comfortable.
Now, I can understand your reluctance to go onto prednisone, given your past experiences with it, but prednisone is the quick fix when readings are low. Maybe you could be prescribed something like Lanzoprozole while you are on it?
Other than that a stronger dose of inhaled steroids might help. It will take longer though. (My GP said 6 weeks to get the full benefit of inhaled steroids. (Maybe not right, he is no expert on asthma 😊.)
Either way, waiting 3 weeks does not seem a good option.
Thanks for your reply. I'm 5ft 5 so it's not a great peak flow reading. I tried Lanzoprozole and Omeprazole which made the stomach pain worse. Ranitidine worked but it's flipping well been withdrawn because of a cancer scare. Anyway I'm jumping ahead because I've only been on the brown inhaler for 5 days. I really haven't given it a chance.
Hi there. I’m so sorry you’re struggling like this. Is nizatadine in use there? I’m in Australia and I take it with good results. I hope you find answers and successful treatment very soon. Steroids are horrible but sometimes a necessary evil and often only necessary in short courses for asthma. Either way I hope you feel better, whatever the treatment may be. Sending a virtual hug 💞
Sorry you've been struggling. Hopefully your GP can arrange further tests to see if it's asthma if they think they're needed. Pollen could be an issue as weed and nettle pollen appeared in July so maybe that.
With peak flow, it's difficult to say. It could be that 250 is your best and so actually it's fine. Have you monitored it in the past or are you new to it? What other people score is not relevant to what you can achieve. It only matters in relation to your own best scores and whether not it goes up after rescue medication.
A good way to help docs know what's going on and if meds are helping is to do your peak flow, before using your blue and then so it again 15 mins afterwards. Those records of change to readings, if any, will help the doctors decide what to do next.
Then also doing your peak flow twice a day (morning and evening before using your brown inhaler) will help them see if the inhaler has improved things since you started it, it of it's improved but there's still scope for more improvement.
Steroids are a pain but if you do need a few days of them it doesn't mean you'll be stuck on them. It could be just say 5 days and then that's fine and things are much better.
As you say the peak flow reading is unique to the individual. 250 is when I feel good after a swim, so maybe it's a good reading and I should watch out for the dips. It's odd because I'm a decent singer, folk, blues style, and would have thought my breathing was better.
You've cheered me up on the temporary course of steroids. I lost shed loads of weight when I took them last because I was doubled up with indigestion. Not a diet I'd recommend.
No they're awful aren't they - but unfortunately sometimes necessary.
Keep tracking your peak flow - it should go up as your brown inhaler kicks in. 2 weeks is common but can be longer for full effect especially as you're new to it - so GP is talking sense there! That bodes well generally for their asthma advice. Hopefully things WILL be better for you soon. Being a singer will definitely have given you a good base.
While I do agree with everything you say, Twinky, I do think that there is a role for predicted peak flows in the management of asthma. Yes, we are all unique and our peak flows are as unique as we are. However, when you first start on your asthma journey your personal best, at that point, can be misleading, not always, but sometimes.
Being symptomatic and knowing you are quite a way below your predicted can be useful information in the absence of a reliable personal best.
Oh I agree that the predicted levels can be useful, especially as a guide initially until someone has a data set.
What I meant was that other people using their own values in relation to someone else isn't helpful, such as saying the likes "oh well I can only get....so therefore yours is great" (which often gets written in peak flow discussions) or "well that's not good for me so it's probably not for you either". No idea if that makes more sense though than what I wrote before! 😅
Thanks Twinkly. I thought you were taking exception at the fact that I had given my predicted score. I wouldn’t usually do this, but the person concerned is around my age so I thought this might be a useful guide.
Early on in my asthma journey my peak flow values were very similar but I seemed to be doing ok, so didn’t visit my GP. Problem is, it doesn’t give you much wriggle room!
The reason you were doing so makes sense - you'll probably have noticed that it's not always that way! 😅 But you're right about not having scope and stuff. The predicted values could do with being revisited really given they're really old and also more individual now than before, maybe due to advances in knowledge and so on. But then I'd like them to have a massive banner saying "these are a guide doctors, a guide!!" 😅
I didn't know about the predicted values for Peak Flow. I've had a look at a chart but what is the whole calculation based on. They are meaningless figures in themselves. What is a "norm" when it comes to Peak Flow?
It's based on population average values for people of specific age, sex and height - all of which can affect the reading. So essentially the average PF value across the population they based it on for eg female, age 34, 172cm is 470 and that's used as the predicted value.
Age, sex, and height do make a difference (for example all other things being equal, a man will have a higher peak flow than a woman of the same age and height; on average men do have bigger lungs for their height than women). However, the values are based on studies in specific populations (I think they used towns in Europe) from some time ago, so it's questionable whether they are actually representative of people now, or of everyone outside that specific population - plus some studies the values are based on included smokers, who tend to have lower values. They also don't account for environmental factors, such as playing sport or a wind instrument, which seem to increase the value - 10 years of oboe is I think why my best is so much higher than my predicted despite severe asthma. Or eg smoking/former smoking, air pollution etc.
I also find there's a tendency to misunderstand how the numbers work and what a population average actually is. It does NOT mean all people of the same age, sex and height must have the same peak flow, even if you don't take those environmental factors into account. Some will be higher and some lower. I got told by a triage nurse once it was impossible to have a best peak flow of 600 because I wasn't a man (my best then, it's 630 now). I'm also 4 inches taller than the average woman in the UK (I think - not sure of the current average but I'm above it) - is he saying that's impossible? Or that a 6 foot tall woman, while unusual, is impossible?!Too often it gets treated as if it's set in stone.
On the face of it my good readings, 250, could almost have me hospitalised, let alone the 180 readings I get on bad days. Yet I haven’t yet felt that I’m an A&E case ( maybe once). I swim, I’m a singer and I don’t smoke.
It would seem that peak flow is only a small part of the picture. I’m assuming my symptoms are asthma but I can’t think what else these symptoms indicate.
Yeah, it's definitely complex. I can be having a bad attack, in resus with all sorts going on and my peak flow is 380-400! For my predicted that would be good, and even using my actual best it's still over 50% - so I'm the opposite to you really. But there are others who have peak flow which is very reliable, more so than symptoms even. Sadly some healthcare professionals can get really hung up on peak flow as the whole picture (that's not true even for people whose PF behaves as expected), and on the averages as I mentioned.
There are quite a few factors - I live with a man who has very mild asthma and he permanently has peak flow that isn't brilliant vs his predicted, but has pretty much no issues from the asthma at all and the readings have been done when he was well. He was last in hospital with it aged 5! I even wonder if your autoimmune condition could somehow lower peak flow (that is massive speculation though and I can't think how).
I agree with Twinkly29's advice to keep tracking your own peak flow and observing patterns. I've done this and learned it's not so much the number itself as the change and the response to medication.
Lysistrata's reply is spot on. You could look online and fill in age, height, gender into a calculator and it'll give you a predicted figure. But at the moment, it's probably better to just keep doing the am pm readings before brown inhaler and watch it go up as the brown kicks in (which it should do if it's asthma). And the before and 15 mins after the blue inhaler too as that shows the blue one helps when you need it. These will all help with your own set of readings.
Ooh the cheek of it! Now ok, it is supposed to happen more than once to be counted as consistently the best, but I don't see how it could be faked anyway. Glad you've proved them wrong!
See your GP quickly. A short course of steroids usually improves matters. I use Ventolin x 2 puffsx2 puffs daily plus the same number of puffs of Flixotide and Serevent.
This solved my very unstable Asthma. It was prescribed by Prof Gibson at the Freeman Hospital years ago and has kept me going ever since. I have been offered combination inhalers but they don’t work for me.
But do see your GP don’t be frightened to go to A n E if your breathing is poor. Don’t ignore it.
There is only 1%of magnesium in your blood the other 99% in your bones tissue and organs if your blood levels drop your body draws it from elsewhere to maintain good blood levels in time this can leave you deficient leading to different ailments
Hi,i started with Adult onset asthma 4 years ago,im 61 now and have recently been diagnosed with PMR.
I understand your recluctance about taking steroids,they have ruined my body,osteoporosis,muscle loss,thin skin the list goes on.
Has the Doc checked to see if its esonophilic asthma? Mine is,i wont go into a long winded explanation,google can explain it better than i .
But just to say normally if you have to have oral steroids its a very short course that normally sorts it out.
Unfortunately for me i had 18 months of injected steroids because my asthma is severe but now im on one of the biologicals so now my asthma is controlled. Its just my luck i now have to take steroids for the PMR,cant win.
Anyway if you are struggling see the doc sooner rather than later.
Tell me about it. Osteoporosis-What with lockdown and all, I haven’t confessed to my GP that I can’t stomach Alendronic Acid. Oh dear, I don’t want to be ill, I’m sick of this.
I'd have a chat to the nurse at asthma UK if I were you. I spoke to one last week when I was feeling rotten and she was brilliant. She asked me all sorts of questions, but made them sound like part of a conversation and not like 111 reading off a computer. I can't rate her too highly. Osteoporosis is common with the steroids take for asthma, so just call and have a chat.
I will do this. Scanning through the forum, everyone is very positive about the nurses at Asthma UK. My GP is good but, in the end, it’s specialists one needs for such a complex condition.
Can I just add that it may take a while for the preventer inhaler to kick in & take effect; hence the need for a short course of pred to tide you over. Frustrating I know but it just takes time.
My asthma started in a very similar way to yours. I also got through coughs and colds easily but then my daughter and her husband and the baby moved into our flat next door. Both are doctors and a busy life so we often looked after the baby for her who was almost one. Robin her name is and she was a test tube baby and seemed to get every cold infection going. And her parents brought infections home from the hospital so that suddenly we had one cold after the other. Summer and winter. I asked her to stay away from us if she had a very bad cold but they sometimes did not tell us as probably needed us to watch the child and later take her to Kindergarten. So it became normal with all these colds that we found harder and harder to shake off.
I am 71 now and this was about nine years ago. Also at that time my daughter and her husband had problems and so we were drawn into that a lot by her and of course it upset me to see her so sad often. I was also recovering from a hip operation (hip replacement) and so my immune system might not have been that good either. And then like you I suddenly had asthma.
I think the colds but also stress. I still have it now and it has got a bit worse in the meantime. My hip problem was so early because as a young woman I was involved in a serious traffic accident and in hospital for over six months with head injuries and numerous broken bones and also my pelvis, hip, knee and jaw. It took ages to be able to walk again. I thought I was ok and it seemed like that until I was 21. I had my accident at the age of 17 so really still a teen. And the doctor told me my hip like an eighty year old. At that time hip replacement unknown and so they said it is possible I might end up in a wheelchair maybe when in my forties. But that never happened. As I kept active and did a lot of swimming, gardening, cycling and walking. I was ok until end of my fifties.
The asthma is awful when lying down in the night. I have coughing fits and lots of pflegm and I take salbutamol for it. I did not want to take something with steroids/cortison for another health reason. I noticed that when I visited home in Norfolk that my asthma was virtually none existant. I do not live in Britain and have not done so for many many years.
Now we are pensioned we are thinking of returning and living near the sea as we hope that will be a good influence on the asthma. I never smoked but I did grow up in a home where both parents smoked so probably inhaled secondary smoke a lot of times. I try to have a healthy diat and avoid stress.
Don't think there is much else you can do about it. The American Academy of Allergy, Asthma & Immunology reports the foods that cause the majority of allergic reactions include tree nuts, wheat, soy, peanuts, eggs, fish, shellfish and cow's milk. If you're allergic to any of those foods, definitely avoid eating them—or anything that's cross-contaminated by them as that can bring on an asthma attack.
Thank you for your reply. There are many aspects of your life that mirror mine. I’ve had a series of problems throughout my life which have seriously affected my walking ability though not as traumatic as a traffic accident.
What you say about stress rings a loud bell. My elderly, independent mother, living alone, showed serious signs of dementia at the beginning of Lockdown. I and my brother spent this April trying to get care for my mother. She stopped eating and was having a series of falls. Thankfully I found a Care home for her. Unfortunately Covid has affected some of the residents now and I can’t visit her.
Like you I have most trouble at night and have to get up for the reliever inhaler most nights.
It’s interesting what you say about the seaside. I’m going to North Cornwall for a couple of weeks. I love the sea and swimming. Maybe this will help. There is a wonderful swimming lake near me. It’s run by a private committee and only members can swim. As soon as I sink into the water my asthma symptoms disappear. I still believe that I recovered fairly quickly from Polymyalgia Rheumatica because I spent the 2 years open water swimming.
Food allergies seem an obvious source but I don’t think I have any. Except one allergy or intolerance and it’s a weird one. I love the taste of honey but it makes my stomach cramp and causes nausea. So I avoid it and it’s a an easy food item to avoid as cross contamination is less likely.
I think the steroid inhaler is beginning to kick in. I’ll see the GP again after the Cornish break and go on from there.
Your retirement plans sound good. I don’t know the east coast so well but have visited Suffolk and found lovely places on the Norfolk/Suffolk border.
Good morning Downbytheriverside, Thank you for your interesting reply. Yes worrying about parents can cause a lot of stress and also not being able to visit because of CORVID. A word that roles off our tongues so easily now and yet last year at this time no one had ever heard of it. Strange times.
I live in Germany. I'm orginally a Londoner and grew up in the Westminster district in St. Johns Wood. My German connection was my mother as her Polish/French parents went to Germany to work, before the second world war and of course not knowing that this would happen. I myself went end of the sixties to work for the French Consul in Berlin, met my husband and stayed. I now live in the North after previously spending most of my life in the South as he is a Bavarian but with Czech roots. I think in retrospect I should never have come here for a lot of reasons, discluding my husband as he was a good thing in my life. But while Berlin was an ok city to be, as very multi culti, the South held problems. Beautiful as it was in many ways but I lived there during the seventies and many of the old Nazis still alive.
We always talked about going back to Britain after our working life and now we could but there is CORVID and the problem of double taxation of our pension should we return and one of my daughters was diagnosed with MS beginning of the year. So it is all difficult. To know what to do. My parents lived in Bedford later and had a stationary caravan in Norfolk. I love that part of the country and was there every other year with my husband and children. And the last time three years or so ago and asthma did not exist the whole time we were there.
Right now I live about 49 km from the North sea. But not near enough to make that much of a difference it appears. We live in an area which was once moorland and it rains a lot and very windy. I also noticed with Asthma that when the weather is warmer I feel better too. All the coughing is when it is colder. As for Asthma in the night I sleep with more than one pillow and find that helps a bit too. To have the upper part of your body a bit raised. Do not know if you do that - if not try and see if it helps you.
What you said about swimming and movement to do with pain - yes I agree that helps a lot. In my case both hips were badly damaged and one more than the other. That one has since been replaced and walking was ok again for a while. But my knees are not good. One of them also through the accident. I guess some things in life are Kismet. On the other hand I sometimes think of the prophecy of the doctors when I was 21 and that despite this I led a pretty normal life and could do many things for a long time that others do. So I am grateful for this. Could do without the Asthma though and am thinking of asking my doctor for something stronger than Salbutamol only I don't know what and read about people having so many side effects. Anyway - I wish you a good day, nice to have heard from you.
Maybe we are the type of people who need the warm Mediterranean rather than cold Northern Europe. It’s a tempting thought.
Do check with your doctor. I’m no expert on this and others on this forum will know better, but I believe Salbutomol is only a reliever inhaler and preventer inhalers should work better. I’m not getting side effects from the preventer inhaler, I believe it delivers a low dose of steroids. It just takes a while to work. I started less than a week ago and I do believe it’s beginning to kick in. I just don’t want to take steroid tablets if it’s possible to avoid them.
Firstly, pollen can be most of the year round it depends on what pollens you are allergic to. Grass Pollen is June but there are tree and plant pollens.
Second Hayfever/Asthma/Eczema are linked in the family of illness.
On and off since 10 have had eczema
From 11 have had hayfever
In hindsight, started Asthma at 15 but was diagnosed at 19.
As others have said don't take a one off PF in isolation, have to consider your symptoms.
When I was diagnosed the GP had asked me to take it 3 times a day for a month.
When you plot it on a graph and join the dots, it was not the actual PF that the GP looked at it was the peaks and troughs and how steep these were.
After the month I was put on Becotide and Ventolin and asked to do the same for a month and they did the same and compared.
It wasn't the PF number but the steepness and pattern of the graph.
PF for some people is irrelevant they can have good PF's but have rough symptoms.
Monteleukast tablets can help taken at night as open airways.
If allergy related adding in antihistamines i.e. Loratadine or Cetirizine can help.
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