Hi - looking for some advice/help please? I’ve had a letter today from one of my consultants saying that he wants to wean me off all my medication because tests are all inconclusive!!! I’m not straightforward and last spirometry was best ever, but at the time I was on 40mg pred, antibiotic nebs for pseudomonas, x4 ipatropium nebs, x4 salbutamol nebs, seretide 500 x1 daily, flixotide 500 x1 daily, NACYS x1 daily, fexofenadene x2 daily, dymista x1 daily, montelukast, azithromycin 250mg x1 daily, esomeprazole 20mg x2 daily - person testing said he’d expect spirometry to be good due to all the meds
I’ve been treated for severe/brittle asthma for the last 7 years and had asthma since I was a child. The CT scan 7 years ago showed thickening of airways, consistent with asthma - when we have reduced my inhalers, my symptoms worsen, chest tightness, increased coughing, breathlessness and wheezing - I can’t understand where he’s coming from!
Nitric oxide test is normal, eosophinils are always normal when they test, but always on high dose pred when they do test.
I obviously don’t want to take meds that aren’t needed, but surely the results currently show treatment is working ?
Previous to asthma becoming severe/brittle I used to run 5 miles x3 a week, parkrun and 10 miles on a Sunday - so upto 30 miles every week! So previously would like to think I was fit - peak flow used to be 450 and I had seretide 500, Ventolin and montelukast to control asthma, with steroids for exacerbations caused by chest infection or hayfever.
Has this happened to anyone else and if so what did you do?
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LottieB36
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I'm trying to resist the urge to just respond with a string of facepalm emojis here at your cons... I can't even. I don't think I've had quite this scenario but definitely had 'oh you're on too much because I have narrow criteria and a test you did while ok was good'.
As the testing guy said, you'd EXPECT the results to be good on all those meds - especially the nebs! And you can have asthma without raised eosinophils and FENO - even if not for the pred which to be honest is probably a major reason. I could understand a cautious pred reduction to maybe help you and get a bio, but weaning off everything???????
Is this consultant an asthma specialist? I wish I could say they're immune to this kind of attitude but they're not necessarily, and can still have fixed ideas about what asthma 'ought' to be - my tertiary consultant claims to understand context with spirometry but his letters suggest otherwise, given he said my good spirometry at the end of an admission post-treatment was 'objective evidence' that I don't have obstruction during acute attacks. I felt great post-treatment and was ready to go home so of course it was good (still had air trapping though).
You said 'one of your consultants' - is this a local/tertiary set up? Which consultant is this one? If it's the local one, can you ask tertiary to knock some sense into him if they're helpful, or if tertiary, can you just use local if they're good? (I know of more than one severe asthmatic who has seen tertiary for assessment but finds a local/secondary cons more helpful for their ongoing care).
What's your GP like - supportive? Can you discuss with them? May also be worth a chat with the asthma nurses here: 0300 2225800 or WhatsApp 07378 606 728 Monday-Friday 0915-5pm
hi both - thank you for your replies 😊 to be honest I’m exasperated by the letter I’ve received! and thank you in advance for reading my next message 🙈. They haven’t got my medication correct despite me previously telling them, he’s written I told him I’d got the flu and a cough, and I’d actually said I’d had my flu jab, and had been experiencing increased coughing, and I wasn’t sure if it was due to the change in the weather as I find the cold affects me, or if I was starting with a cough!
I’m currently under the care of Royal Stoke, which isn’t a tertiary centre, I’ve asked in the past if I can be referred to one and have always been told it’s not necessary as they don’t do anything any different to them!
There are two consultants who look after me, one says his expertise and interests are asthma, copd and sleep apnea, the other says his interests are asthma, pleural conditions and sleep apnea 🤷🏼♀️
I’ve spoken to Asthma UK and the nurse I spoke to said that she didn’t think the letter was appropriate and that I need to be referred to a tertiary centre for a second opinion. She also feels I need to be under an bronch specialist due to previous Pseudomonas lung infection as even though my last sputum sample was clear, it may be that the sample wasn’t from low enough in my airways or the pseudomonas may be at a low level so not detected by the test - which is the aim of being on long-term nebulised antibiotics so that it keeps infections at bay. I’d been unwell for 2/3 months last year and nothing was making me better, so I suggested a sputum sample and Pseudomonas was present, so I was prescribed colomycin nebs for 3 months then it was stopped, then I had an infection that didn’t respond to 2 courses of antibiotics, but when I suggested we tried ciprofloxacin the infection cleared. The first consultant I’ve mentioned then decided it would be wise to restart the colomycin nebs for a 6 month trial even though my sputum sample was clear. At the end of the 6 months I asked if I could stop and the first consultant said to continue for a further 6 weeks until my review. I was reviewed by the second consultant and despite there being a reduction in my chest infections, the second consultant decided to stop the colomycin as I don’t have the bug that this is used to treat - this is why the asthma nurse thinks I also need a bronch specialist, as previously mentioned this is what we want - the levels being low so not detected in sputum!
The two consultants don’t seem to communicate with each other and seem to also contradict each other!
I have an appointment booked with my GP in just under 2 weeks, who has previously said he’ll refer me anywhere I like. We were only talking a couple of weeks ago, as I’d asked him the question as I’d sent my consultant an email regarding a new biologic that I may be eligible for, which will be coming out some time next year - I’m still waiting for a response despite receiving this letter today.
I can’t quite believe that they have treated me for severe asthma for the last 7 years, then suddenly make this decision based on low feno, low eosophinils, “normal” spirometry - I could understand if I didn’t respond to the medication but I do! I had 2 1/2 years of 40mg of pred so now have permanent Adrenal Insufficiency, steroid induced glaucoma and cataracts, thin skin, stretch marks etc - basically I’ve improved much in the 7 years I’ve been under them, and have a condition where I’ve got to take life-long meds, carry an emergency injection everywhere and where medic alert jewellery! They also treated me with theophylline and I had a 24hr infusion of bricanyl for 18 months - I requested to come off this due to side effects. How can they prescribe high doses of prednisolone, knowing the side effects if they weren’t sure of my diagnosis?
My asthma was well controlled until I had pneumonia 7 years ago, then it spiralled out of control despite maximum meds - I did have a constant cough, which improved with ipatropium nebs - I know I’m on high dose inhalers, but when we’ve stepped down we’ve ended up having to re-start!
My peak flow is variable, I record it every day and night, it’s lower in the morning than it is before bed, I always take it pre neb, then after neb and it’s always higher after nebs 🤷🏼♀️
I have weird reactions to food as well, I’ll experience tingling lips, throat tightness/itching and itchy ears to things I’ve always been ok with. I get increased symptoms when it’s cold/windy, strong perfumes, bleach, flowers, cats, car fumes, cigarette smoke etc etc
Without seeing me he’s made me feel as though my symptoms aren’t real and they’re all in my head!
I’m worried now that wherever I go, they’ll be of the same opinion because I don’t tick all the usual boxes 😞
I’m absolutely appalled at your treatment! Please, get your gp to refer you to the nearest tertiary centre pronto. Don’t worry that you don’t tick all the boxes - I go to the Brompton in London and they basically ignored everything my previous hospital had to say (weren’t at all interested in fact!) & went right back to basics, did all their own investigations for every lung disease imaginable. I knew I had asthma and was prone to lots of chest infections - within two days they’d diagnosed bronchiectasis, then ABPA and later on SAD (specific antibody deficiency) and came up with a treatment plan. I’m so grateful to them and still go there regularly. If I need emergency treatment I can either go to their day unit or they instruct the local hospital what to do (and the local one wouldn’t dare contradict them!)
I believe you’ve got two tertiaries not too far from you, QE Birmingham and Wythenshawe, so do some research and see who sounds good. Or maybe someone else here with local knowledge will give you a name in a PM.
I'm so glad you have a good GP and that the Asthma UK nurse has given you an excellent steer.
I've seen various consultants over the years, at the same respiratory clinic and some can be off script & don't like to discuss their ideas beyond telling the patient "this is what's going to happen." I now discuss everything with my asthma nurse as she's very knowledgeable and has asthma, so knows the challenges.
Things can change for asthmatics even without something big like pneumonia. I've become triggered by a whole bunch of new stuff while other things have calmed down. I now avoid sulphites, preservatives, colourings, alcohol, omega 6 (soya, tofu, palm oil, avocado, chicken peas, plant based oils apart from coconut oil so no crisps & chips, processed foods, peanuts).
I hope you don't have to wait too long for your referral. All the best.
In my experience it's a mixed bag, but your situation is just not acceptable, having the two asthma consultants boxing you in. Give yourself a pat on the back though for taking the initiative and getting away from their "care". Today things start to change for you.
Hi Lottie i agree with e ery one on here i asked for 2nd opinion and was glad i did the 2nd doctor saw how i struggled to get up and short of breath he said he new what was wrong sent me to see a specialist and found my wind pipe had closed up quite a bit don't know how or why but all good now thanks to my new consultant he also told me to stop my azithromycin when given any other antibiotics from my GP as they contradict each other and wont work as intended ,hope ypu get to see some one who will sit and talk to you like it's all in our head.xx
Hi Lottie, I totally agree with Lysistrata, from the horror of the consultant'consultant's suggestion to contacting Asthma UK nurses. From there you should have a plan as to how to get a second opinion, which I believe is necessary in your case. Every hospital trust will have details on the process of seeking a second opinion, so Google your Trust Second Opinion and that should give you the necessary information. It may be useful to discuss with your GP who can advise the consultant who wrote the letter that you're seeking a second opinion and why.
seriously I’d listen to your consultant and give it a try. Often the layering of Jed’s is counter productive and it’s worth reducing as long term side effects can be worse - calcium leaching and acid reflux which in themselves require more meds. The aim would be to return to active fitness and minimum meds
Minimum meds is the aim, but not always possible especially for someone with what appears to be confirmed severe asthma and likely bronchiectasis. Yes, there are side effects, but those have to be balanced with the substantial risks of not taking them. And this consultant seems to be aiming for *no* meds, based on some fairly basic misunderstandings of how asthma and spirometry work. Good spirometry on medication, or low/normal levels of something the medication is designed to treat, does not show the medication isn't needed!
It sounds like LottieB36 would prefer to not need the meds and to be as fit as she was before, but in her position, as others have said including the specialist asthma nurse, it could be dangerous to come off these medications and a second opinion is very much needed before anything is changed. Putting asthma as something they specialise in seems to be way too common for consultants in my experience, and does not actually mean a doctor understands how to treat complex asthma, especially with comorbidities.
I'd also be wanting to do absolutely nothing until I'd discussed all this with someone who understands asthma properly - and can look at sensible ways to reduce steroid dependence, for example a biologic if eligible.
you’re entitled to your opinion but I hope Lottie ignores it - I think you should read her post again, carefully… all of us with severe asthma long to “return to active fitness and minimum meds” so I find this advice patronising to say the least
I wouldn’t come off anything without a second opinion. Asthma UK is great and hopefully you’ll be able to see someone who can help.
If you were to come off medication, surely it should be one by one and not all at once. That way you’d see what medication is doing what. But I wouldn’t do anything without seeing someone else.
Was the letter 'electronically signed'? I had a letter once where the secretary had made a major spelling error and an omission and it hadn't been picked up by anybody except me!!! Had to send a photocopy of it back to the hospital where it was re-done and the corrected one made much more sense🙄.
thank you to everyone who has responded - I’ve had a call from my consultant apologising, it’s an error in the letter 🙈🙈🙈 I think I’m still going to ask to be referred to a tertiary centre though!
Wow that's some error!! But kind of glad to hear they're not that crazy - sadly I actually did think it was completely feasible that they would tell you to stop meds as I've heard this before. But very glad they haven't!
I agree that a tertiary referral would probably still be a good idea - if nothing else you could get advice on the infection side, and maybe see if you're eligible for a biologic, which your local might not offer.
Jeeze, I wish I was speechless but... I think a lot of us experience different cons giving "strange" advice my cons told me to come of all my meds and had to start again 1 by 1, based on feno and not having a wheeze... For them to go back an say "yes you have severe asthma" I don't understand why they still try to fit us in a check box? It's clear from this site alone were all unique but also similar in so many ways so why do these "specialists" not know common sense... Or listen to us. But I'm glad it's a mistake this time, but get referred. Good luck. X
sounds fishy to me, it’s more than “an error” surely! more like a total c**k-up! ask your gp for the tertiary referral, Lottie, you’ll be so glad you did - all the latest treatments and research available to you, what’s not to like 😊
Wow! Some mistake and doesn’t excuse the stress and worry I imagine it has caused. You aren’t on your own; my feno, esonshophils, spire’s keeping coming back normal. But that doesn’t stop my asthma flaring up and when at gp/in hospital they all agree it is asthma.
I see ‘two’ consultants at the hospital I’m at. But one is my named consultant who all correspondence goes to and signs off treatment plans and that other I see when needed ie at short notice etc. but very fortunate they both communicate with each other and on the same page.
it is weird but all consultants seem to want to try it to see if it improves us or makes us worse.
I was very fit and no problem when young and then it all went down hill.Was put on lots of meds and eventually found out it was not asthma at all it was low estrogen. None of the many doctors and nurses had spotted this. So, the result is I don[t trust any doctor unless they prove themselves accurate and helpful. Like you I would be panicking.
One thing that has helped me is being able to go to a free prayer forum for comfort. I've prayed for the others there and them me.. and I am not religious! accuratepsychicreadingsonli...
Another is my rock of a husband. Nothing gets him down or is too much for him.
the last year my asthma has worsened and I’ve needed 5 courses of pred to avoid any hospital trips. I’m weeks away from qualifying as a nurse so I know what I’m doing to keep myself at home and my GP are happy with my self management of asthma and they can hear when I call then that I’m genuinely struggling. Got referred to asthma consultant late this year and he cut my Fostair dose in half after I had just come off 10 days of pred and my tests are coming back inconclusive so far so I feel like this will be the way my consultant heads too. But in my opinion and experience it’s absolute BS. Like you would be highly concerned if your tests weren’t good on that quantity and dosage of meds.
The way my consultant wants to try and capture a true picture is that when I feel I need a course of steroids I have to come up to the clinic and have a full set of bloods done including allergy bloods before starting pred so that they can get some kind of indication of what goes on when I’m really symptomatic.
You definitely need to demand a referral to a tertiary centre and bronch specialist.
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