Hi, I posted what is below on Asthma uk forum and one reply suggested this would be another good place to get info. I am awaiting re-referral to a consultant, but really wondering if I can get them to give me a ct scan to check for bronchiectasis (which my mum had), as my diagnosis is atypical asthma but my issues with chest infections and odd presentation make it hard for me to get looked after well in primary care.
I have read an article for GPs that mentions that frequent viral infections (which I think mine usually are) can also be a feature. However, I don't generally produce large volumes of sputum (and it's never been discoloured or bloody), although the typical cough I have is wet. Any ideas or info or experiences welcome.
I was on Clenil or Fostair for apparent asthma (neither seemed enough, and even together they weren't enough, though a brief spell on 2000 mcg Clenil was more effective), and with Montelukast added seemed to get through more colds without developing bronchitis. I would still feel a bit rubbish but get a bit of a dryer cough. This seemed to throw unfamiliar GPs off as the crackle and wheeze were missing, even when a problem (aggressive cough) was developing.
Back in November I struggled with bronchitis for about 2 weeks, not quite giving in, using lots of salbutamol, until I cracked and got the rescue pack of Pred (40mg/day x 5). I saw a new GP to check in and he was thrown by the lack of crackle and wheeze, but by then I was waking up during the night and sitting up coughing for an hour at a time and not in any mood to wait longer for Pred.
I finished the pack on Friday and got sicker over the weekend, resting on Saturday and spending Sunday in bed. That evening I realised I was shivering, got back under the covers, took my temperature (39.5) and realised things were worse. I saw an out of hours doctor who put me on a nebuliser and gave me Amoxicillin (7 days) and Pred.
Back at the GP a few days later I tried walking and injured myself so badly from coughing that I am still in pain now and unable to wear a bra. The following week I was still feverish so I had a week on a broad-spectrum antibiotic (Clarithromycin?). Altogether it was 2 weeks in bed before I started gradually going outside again. After 3 weeks or so on 40mg/day of Pred, I am now tapering gradually by 5mg/day every 7 days. I feel 100% better (in fact like a superwoman; I wish I could take Pred all the time even though I know that's really a terrible thing for people that have to).
My mother had bronchiectasis and her symptoms were very similar (other chest issues in the family may have been misdiagnosed). I have been referred back to see a consultant and I am really hoping they will give me a CT scan to rule this out (my x-rays are fine and I have normal spirometry when well, but I believe the same was true of my mum and it is common in bronchiectasis). But I have never needed antibiotics before this bout of pneumonia (I have been given them before but always suspected they were unnecessary and had never previously had a fever related to a chest infection or been ill in that exact way).
Clearly I have some asthma (though I have unusually good peak flow as my baseline and rarely wheeze), given the inflammation that develops from any cold. I have exercise-induced asthma and react to cold air and smoke.
Does anyone know anything about what else is going on (especially why steroids work but not well at low doses)? Particularly, does bronchiectasis sound likely?
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netochka
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There is no way we can second guess. I wonder how long it is before your appointment with consultant but s/he would be the one who would refer you for a scan and any other tests or referrals you may need.
I am not sure if you have a definite diagnosis of bronchiectasis but if that is the case I would assume you have had a ct scan whilst under the care of your previous consultant.
I am sorry you are having all the health issues and hope your consultation goes well. You could always get in touch with BLF tomorrow - they are very helpful.
No, definitely not expecting any 2nd guessing, and of course you are right. But for me it's really helpful to be well informed when I see the doctor. (It was made as an urgent referral but there are a lot of much sicker people in the world so it will be end of March... really hoping not to have to step back up on steroids before then. I would also like to be in good nick to have a 2nd child if possible soon, as I'm 38.)
I can totally understand your concern re your appointment not being until the end of March hun, especially as you are wanting to have another child. Your consultation will I am sure be worth waiting for. I feel sure you will be given a ct scan - certainly hope so. You will hopefully be more reassured when you know exactly what you are dealing with. I was too young to appreciate how difficult it is to get a diagnosis, as I have had it since babyhood, 68 years ago. I also have asthma, more recently, but bronch is my main concern.
I wish you well in March. Please keep in touch with us.
Thank you for such lovely warm words! I am sorry to hear you were bad enough to be diagnosed so young but it is very interesting to hear your story. I will update for sure. Hope you stay well. X
Hi netochka. Getting the correct diagnosis can be the biggest of battles. Why not ring the BLF nurses tomorrow (03000 030 555 during office hours) for advice? They are very knowledgable and will be able to talk you through your options. Good luck.
Thank you. I might get some really good info there, great advice!
Hi it was me who recommended this site netochka. I don't have your illness only copd but there are many on here with bronchiectasis who will be able to advise you.
I do know that one of the symptoms of B is frequent chest infections and hopefully your consultant will give you a CT scan. If they don't offer then ask for one.
The others thing to remember is that you are not your mother and it doesn't follow that you have B as well and I really hope you don't. Let us know what your consultant says. x
To be honest I don't mind what the diagnosis is so long as it means better management and a treatment plan that aims not to have 3 exacerbations a year.
That's reassuring! I will see the same consultant actually but last time I was very anxious to please her and be discharged, and wanted to be convinced that Montelukast would solve everything and stop all the exacerbations. She was happy to do no investigations and I was too.
Now I feel differently and hope she does as well. Thank you for the optimism.
Oh if its the same one she is bound to investigate further. I was told I had bronchiectasis after I had a scan but I also have very severe COPD so my symptoms would be different from yours but I hope you get some answers, there is nothing worse than being in limbo.
Wow I am sorry about your copd and that it is very severe as well. I can't really imagine how hard it must be, even without coexisting bronchiectasis. Thank you for sharing about that and for the encouragement to sort this out. X
Hi netochka and welcome. Now sit down, take deep breath and try to calm down. You are going to see a consultant which is a good thing. As Coughalot told you, if they don't offer you a ct scan to rule bronchiectasis in or out, explain about your Mum and tell them that it is important for you to find out definitely whether you have it.
Bronchiectasis is not caused by an inherited gene. It comes about because of damage caused to the lungs or airways by such things as pneumonia, cystic fibrosis, whooping cough. I can understand that you are concerned because of your Mum. I can only tell you that nobody in my family had it before me and I have two grown up children and five grandchildren, all fit as fleas.
I am no expert but your symptoms sound like your asthma, being made worse by the bad luck to get a chest infection which did not respond to the first line antibiotic, amoxycillin. It's good that it began to get better when the antibiotic was changed.
I hope that you get your answers from the consultant. In the very unlikey case that you do have bronchiectasis do come back to us with any questions. we will be happy to support and advise you.
Hi thanks but not sure where the suggestion to calm down comes in.
I have 20 years of issues here that don't fit very well for asthma alone (according to GPs) but no further investigations till now.
Apparently bronchiectasis can be hereditary in some (possibly rare?) cases and it is significant that my mother suffered for many years in the UK (where I live) with the wrong diagnosis and very similar problems, until moving abroad and being offered a ct.
I was diagnosed 64 years ago and unfortunately I have met many who have been misdiagnosed as having other conditions when it was actually bronch. I can't understand why they are refusing to give you a ct scan as it is the only reliable way to diagnose bronchiectasis. I have had lots of them over the years. I do hope that you get answers so that you can have the treatment and management for your condition that you need.
Wow 64 years! That's a long time to be managing this.
I should say no one has refused me a ct as such -- I never asked for one and it hasn't really come up except with one GP in passing when my mum was diagnosed.
I am hoping they will say yes even though I am sure it's expensive (or that they will make another suggestion and follow up on that) because I keep being told it's not (or more often not just) asthma and clearly it's not getting the optimum management.
I have got the idea from reading that bronchiectasis (if it's that) might be generally underdiagnosed in the UK.
I'm guessing you've had really hard experiences along the way with such a longterm diagnosis. Thank you for chatting!
Hi N, maybe I'm wrong but I think whether you have a CT or not will depend on if your consultant thinks it's necessary. I know that here ( in Ireland ) scans are no longer offered routinely, in the way they used to be and I'm sure cost plays a big part in this. So all you can do is explain your situation and why you feel you should have a scan and hope that he feels the same way.
I have asthma as well as Bronchiectasis and the two conditions do spark off each other. With me the main problem is the Bronch but when I have an infection the asthmatic element kicks in and I get breathless and wheezy too. You mentioned crackles and that would suggest something other then asthma. That exacerbation you had, the sickness, the high temps, the weakness etc., do sound very severe and I can understand you wanting to get it checked out.
Beware high doses of steroids. You may find a high dose beneficial the first time and who wouldn't want to feel like Superwoman ? But they bring so many negative side effects that you really should save them for when you absolutely need them. BTW, the fact that your condition responds well to steroids could be interpreted as being an indication that it's asthma rather then Bronch.
You need to get it all sorted out with your doctor and consultant. Hope the constation goes well for you.
Hi and thanks. That's rather the point -- my consultant may not think it's necessary (my mother had to leave the UK to get a ct and a diagnosis in France).
And obviously I am on steroids because my GP sees it as essential. I don't take those decisions.
And thank you for sharing your experience of asthma and bronchiectasis dual diagnosis. It is useful to hear about other people dealing with constant chest infections!
Hi I have COPD dx in 2006 used to get exaserbations only in feb and October never had to use my blue inhaler between exaserbations. Then three years ago I started getting Infection after infection my resp consultant. Sent me for a ct scan and it showed a small amount of bronchiectasis now he refered me to an immunologist as my immune system is low
I'm sorry things got worse nottobad, but it's very interesting to read your story.
I guess most people on here like you have copd? I don't know much about it but it would be a lot more serious than my issues I think. Sorry you have such a lot to deal with but I hope having the diagnosis is helpful and means you get the best treatment.
Thanks to all of the people who took the time to reply to the above message. I was so bewildered then and it was helpful to see some perspectives and hear other people's experiences. (Really I wanted those other stories as these things can feel so isolating).
I haven't been on here in months, but am lucky in that I will be heading back to the asthma forum
My consultant gave me a ct and found some changes likely caused by asthma (I think 'dilations' is the word?), but no bronchiectasis or anything else of note. She agreed to allow me to take Fostair 200/6 4 puffs a day from now on (supposed to be equivalent to 2000mcg of old-style ICS + the LABA). I am so, so happy about this! Already I am feeling the benefit.
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