I am getting to my wits end and hoping for some good ideas from this great community. I suffer from severe asthma. In less than a year I have had 8 chest infections:
4 - required steroids
6 - required antibiotics
2 - were COVID like but were not, though I did receive codeine for 1 one of the flare-ups.
1 - required visit to A&E but not admitted.
I have asked for the resuce pack (antibiotic with steroid) but was told it is only for COPD patients
I have asked for a nebuliser but advised it is only done in A&E and if I want a home nebuliser then it requires a specialist presciption. I spoke with my pulmonologist who stated they will not give me one.
My GP has told me Relvar is the highest they can go on steroidal inhalers and anything stronger is very speacialised requiring a specialist.
I am on everything the GP can give. I am wondering if asking for long-term antibiotics will help reduce the infections. Anyone on long-term antibiotics have any thoughts? Any other thoughts? I am not into herbal medicines and I will not try. I am heading in the one of the two times of the year where my asthma flares and I would like to minimise any further flare-ups.
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B_Asthma
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You need re assessing by a good respiratory specialist. Your GP is out of their depth, the ‘pulmonologist’ you spoke to is offhand and A&E are only there to deal with the situation in the short term.
Severe asthma with multiple infections can develop into bronchiectasis which needs its own specialism. and management. This is so often missed by GPs and general respiratory consultants.
There are also specialists in difficult to control asthma.
In any case, it appears to me that you need a ct scan to see what is going on. This should be read by an expert, not the GP or a radiologist who can also get it wrong.
My best suggestion at the moment is to look for a bronchiectasis specialist in your area. They are usually at big teaching hospitals. Take the name to your GP and insist on a referral on the grounds of the multiple infections which are not being satisfactorily dealt with.
Do Not Take No For An Answer.
A bronch specialist can diagnose from a ct scan whether or not you have developed bronch and if you have not, they often know and work with high grade difficult asthma consultants who can take over your management.
In any case, you cannot leave it as it is. This is your health that we are talking about and you cannot afford to put up with the ignorance and complacency of the doctors whom you are subject to.
thank you. I am not fully convinced what I have is asthma from when I was younger and I believe it has evolved into something more. This probably one of the few times when I miss US healthcare because my asthma was controlled and I was taught how to mange it. I only needed steroids twice while in the US and only developed bronchitis during the winter. I was given a peak flow meter, a nebulizer, and I had specialists that knew about all of the different types of asthma. Here in the UK, GPs are too limited and specialists are not on top of asthma like US pulmonologist.
This is why you need to take the advise on here and insist on seeing a specialist in difficult asthma and also have it checked that it hasn't developed bronchiectasis alongside which happens very often in lifelong asthma. UK healthcare is very good if you get to the right person but GPs and many general respiratory consultants do not have the training or experience in these conditions. You gave just told us that you have been fobbed off by your GP again today. You need to take control and get to the right expert.
I used to have very unstable asthma, always coughing up discoloured mucus , frequent exacerbations , A and E visits and hospital stays . Then COPD diagnosed .
But for some reason for the last few months my chest is clear, I still cough but mucus comes from my throat now . I take a separate preventer ....it took ages to find one that works ....and blue reliever which I haven’t used for months . Combined ones do not work for me , others do well on them we are all different , but I was given a routine oral steroid years ago and am now stuck on it .....my body is dependent . I wish this was not so.
It took many, many courses of antibiotics to clear my chest.
I tried Monteleukast , some find it useful.
I was given a nebuliser and nebules , but I only use it in emergencies . If I have to use it I know I need to get professional help, and my A and E is only five minutes away.
I have a rescue pack at hand too.
Have you had any allergy tests, I have three adult asthmatic daughters all allergic to different things.....pets, grass pollen, house dust etc . They now know how to try and avoid these .
What has helped me ....more fruit and veg, garlic, multivitamin and mineral pill....I also have Vit D and calcium prescribed for my bone health.
I also practiced Buteyko breathing exercises for years .....but they are not suitable for everyone , classes are very expensive and tutors vary. But it taught me the importance of gentle , gentle nose breathing to warm and filter the air and help prevent hyperventilation.
Also mindfulness and meditation ....Jon Kabat Zinn has videos on you tube . They help calm.
Suitable exercise ....but check with your health professional ...there used to be pulmonary rehab classes before Covid.
Yoga I have practised for years, but now have osteoporosis due to oral steroids so I have to take care.
Thanks for the reply. I have not had allergy tests recently. However, as a kid, I had allergies to dust, mould, pollen, trees, and cat dander.
I grew up in house with smokers and family events, there would be a cloud of cigarette smoke. I have tried to raise the point its COPD or a ACOS but I keep on being told there is very little difference. I have asked for a rescue pack but told it is only for COPD even though I have had repeated chest infections.
Just spoke with my GP, I have been told long-term antibiotics don't work but they will write the chest clinic for long-term steroids.
Trouble is long term steroids have side effects as I know to my cost ....balance has to be sought . I really wish I was not now dependent on them .
Has your mucus been tested to see if the antibiotics are working on the particular bug. I had to take very many courses of antibiotics as well as steroids to clear my chest. I know it’s a difficult time with Covid regulations , but can you ask for a sputum pot and get a test.
Just to say , after writing this I went to get the bins in ....cold weather ....I lost my breath, panicked and had to find my inhaler. First time for months . And it was upstairs . Real panic. My peak flow is much lower than it used to be , even though my lungs are clear. And I hadn’t yet taken my morning preventer inhaler .
No wheeze or cough just very breathless . Serves me right for being complacent I guess.
I grew up in an atmosphere of coal and tobacco smoke too. My grandmother, mother , myself, my children were and are all noisy wheezy breathers.
I agree with the others you need specialist care, can you ask for a preliminary video consultation with a pulmonary consultant . Steroids alone won’t help infection, and there are side effects. You need specialist help ......please ask your go for a referral
You need a review, scans etc .
Can you ring the BLF helpline on 03000 030 555 , for UK residents.
I don't always produce mucus and if I do, it is 5p size. However, when I start antibiotics I tend to get more mucus production. I quesiton, if a part of the issue for me is I am not able to move mucus.
It definitely sounds like you need a referral to a consultant because like you say, you are at the top meds a GP could prescribe. Your GP really should do this, but like the other’s have said, badger them for a referral.
Nebs aren’t generally given at home here for asthma because if it’s bad enough for nebs you need to be in hospital. There are the odd few who seem to get them who have multiple trips to hospital per year.
There are different meds and doses a consultant can add on that GPS aren’t allowed. I have severe asthma and am on:
Fostair 200/6 6-8 puffs a day
Spireva
Alvesco 180
Avamys nasal spray
Montelukast
Phylocontin
Ceterizine
Ventilin as and when
Steroids when needed
Sounds like your preventer isn’t working for you and you need more help with it!
Infection wise...I’m not sure about long term antibiotics...if your body would get used to them and they’d have no affect. I’m not medical at all though so it’s worth asking. I’m wondering if your chest infection is one that has never cleared properly. Do they give you different/ stronger antibiotics each time?
Hi again, with me long term steroids were the last resort and they do have side effects ....I have bone scans , tablets for osteoporosis ....eye problems .
There are other options , other inhalers to try, other antibiotics, other tablets . I had to try a number.
I had to keep a peak flow chart too.
You really need to speak to a specialist .....I really wish I wasn’t dependent on oral steroids now . And not so complacent about my asthma after my breathless attack in the cold this morning. Real panic , still trying to recover. I will keep an inhaler downstairs in future .
Actually I’d agree with knitter that I’d only want long term steroids as a last resort. I’m now fully insulin dependent & my eyes aren’t great& like knitter said there’s a whole heap of side effects to long term steroids. It feels like there could be some other options first...different inhalers & tablets etc
Can you change your gp or afford to go private so you can get a proper diagnosis ASAP? Shouldn't have to do this but sometimes its the only way.
I was you a few years ago, incessant chronic chest infections, pneumonia x 5, I was ready to slit my wrists . I was I my 50's. Finally got referred and my uncontrolled moderate asthma had developed bronchiectasis (or small airways disease depending on specialist). My Wimbledon practice taught me to manage my condition, gave me a rescue pack, never bothered with amoxicillin because it never worked and reccomended I have prophylactic antibiotics in winter. Sadly I moved away to new practice who didn't know me from Adam, its been tough but the air is cleaner here awayfrom London and 2 years ago gp did agree to allow me to go on winter Azithromycin (250mg on 3 days in the week November to April ). Its been the saving of me the Azith - in that time i only had one infection and it wasn't the usual horror lasting weeks - also had a change of preventer 2/3 years ago, Fostair which has been brilliant for me. Rarely need ventolin now. Bummer is I now have CFS from all the infections and pneumonias.
I would deffo change this rubbish gp of yours if possible and use a credit card to see a private bronch/lung specialist. I certainly would if I had my time over. Its so hard to be assertive when you're feeling depleted and ill.
I also take many supplements to improve my immune system
Wishing al, the best to get sorted out B_Asthma. P
Thank you for your reply. Unfortunately I cannot afford private but if I could, I would go private. My GP told me that evidence does not support long-term antibiotics and my GP will not give a rescue pack.
Change the gp if you can. You don't have to see the same go in a practice. As I said, I gave moderate asthma with a propensity to chest infection and I have abs three days a week during my worst time, winter. I think this is what you mean by long term abs?
He's not treatin you correctly.
Perhaps call the help line 03000 030555 office hours for guidance on how to proceed to get what you need.
I'm no doc but long tern steroids doesn't seem right at all.
I have found that putting concerns in writing (either by letter or by email) can get! It has taken me many years to work this out and I wish I had done it years ago. I am always polite and undemanding when I write. I just state the facts as I see them and ask for help to deal with them. Sometimes, I think GPs are so overloaded that they don't take the time to really listen, whereas they can go back over a letter or email and check out what you are saying. Also, it's written down so they can't deny you have said it!
It is a great shame that you can't see someone privately. Like you, I had a run of infections which were treated with antibiotics and steroids. This went on for months and months. Eventually, I asked the GP to make a private referral. His response was, 'Yes, that's what I would do if it was me.' I held my tongue, but I thought 'Well why hasn't he referred me before?'. Anyway, I saw the consultant once, told him I couldn't afford to have the CT scan he wanted me to have and he imediately transferred me to his NHS list. I am aware that this doesn't happen for everyone, but if you could just scrape together enough for an initial referral you may finally get somewhere.
I was finally diagnosed with Asthma (which I was already being treated for), COPD and Bronchiectasis. Since being under the care of the consultant, my symptoms have been much better controlled. I also find that I am taken seriously whenever I phone the surgery to request an appointment or to speak to my GP. I may just have a wonderful surgery, but I feel that the change came about with the new diagnosis. I think I may now have a flag by my name on the computer as they cannot do enough for me.
Don't know about the U S but in uk you have to scream and shout sometimes to get what you are entitled to. You have had good advice on here, get shouting.
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