Mum and Ongoing cough and breathlessness..

[JetJet]

I am after some advice from you wise people as getting slightly confused with my Mums condition/treatment..

She has recently turned 93, had Covid in Jan this year, recovered. Then had a bad spell May /June and finally a sputum sample was taken and showed various bacteria ( 4 types I think) . This was eventually treated with a targeted antibiotic Ciprofloxacin which made her feel awful but she managed to finish a 1 week course . At the same time we paid privately to see a Bronchiectasis consultant as she was so bad and GP would.not refer himself.

Consultant tried her on Erdosteine instead of Carbosteine and gave her Fostair inhaler instead of ventolin(?)

She had a really good run over the summer ( not literally) and was able to dead head flowers, drink gin in the sun and had some energy.

In early Oct she had her flu jab and felt a a little bit rough and then not long after started to decline. Numerous sputum samples showed candida. 1st GP felt this was from Fostair and said it was probably just candida colonisation. But since then her cough worsened and she was coughing up yellow/green phlegm rather than the usual white. Loss of appetite, hot and cold and so tired. Tested for Covid and was clear. She has been treated with 3 different penicillin based antibiotics and had a chest xray which has ruled out pneumonia. On Friday she was given 1 week of Doxycycline (spelling?) and may be a little better. GP took another sputum sample last week and I have had a message to say it shows yeast infection ( candida still) and they will leave treatment at pharmacy. I don't know what they are issuing as need to collect it today.

If you are still with me and thank you to those that are...can candida in lungs cause these problems? Is this a chest infection just caused by candida. Is Fostair or repeated antibiotics causing the candida to become present? Are we now on a viscious circle of the preventative treatment causing issues.

Mum has finally been referred to a respiratory team ( where the Bronchiectasis consultant is based) but I have been told an 18 week wait at least.

Has anyone else had the same problem and can explain to me what candida does, can it just be present in the lungs and not cause problems. Also should I ask GP for 2nd week of Doxycycline and in your experience is this the best antibiotic for Bronchiectasis patients to be started on. I feel she has had 3 different lots of antibiotics to no effect and her condition had really got worse.

Any thoughts appreciated xx

[Hidden]

It seems to me that you haven’t grasped what has been said to you in the past. Analysing what is going on down there in your Mum’s lungs and what antibiotics are most likely to deal with it is a total waste of time. At our age there will be all sorts of nasties festering away down there. Your Mum needs to use all of what little strength she has left in coughing it up and out. Reading past replies to your posts I see lots of information on how to do that has already been given to you.I use a steamer to loosen it up and the Aerosure followed by loud and disgusting huffing and puffing on a daily basis. If I fail to do that as I did recently on a couple of nights away to celebrate my 90th birthday I can guarantee an infection will follow. Just trying to help. 🤷🏽‍♂️

[JetJet in reply to Hidden]

Hi Don,

I have gratefully accepted and taken the advice previously given on board and Mum does all the clearing exercises twice a day and was doing really well. I think my question was more to do with is candida a problem or not. And when having a 'flare up' what is the best treatment as she has never been given a rescue pack. Maybe further methods of clearing /better clearing are my next step then and thank you x

[Hidden in reply to JetJet]

My rescue pack consists of 8 Doxycycine tabs (2 on first day then one a day), Prednisone (6 per day for 7 days). That has kept me going after 2 or 3 flare-ups a year for goodness knows how how many years. I hope your Mum gets back on track, being old is bad enough without those setbacks. x

[JetJet in reply to Hidden]

Thank you Don. She is currently.on the Doxycycine but never had Prednisone. Will see if I can get an appointment with the specialist ASAP.

[Hidden in reply to JetJet]

Doxycycline without Prednisone doesn’t work for me.

[Oshgosh in reply to Hidden]

That’s sound advice, Don.I get tired of nebulising and chest clearance , it it’s the only thing that keeps me going.

I hope that you are well x

[Hidden in reply to Oshgosh]

It’s the cross we have to bear. 🤷‍♂️x

[Oshgosh in reply to Hidden]

Indeed

[Runrig01]

I take immunosuppressants for another condition that has caused candidia in my larynx and oesophagus. I had to take a 3 week course of anti fungal meds. Fungal infections rarely occur in fit individuals but are much more common in immunosuppressed, but they need treating promptly to prevent complications. After the fungi resolved, I would get bouts of tongue pain and discoloured lesions but not like thrush. A professor in oral medicine was convinced I had a squamous cell carcinoma of the tongue, and took a biopsy. Thankfully it wasn’t cancer but a fungal infection called chronic hyperplastic candidiasis, due to the previous infection. I was warned they can turn cancerous, had another 3 weeks of anti fungal treatment, and given nystatin to use 1 week in every 4. I tried stopping the nystatin as the idea of using it for life isn’t appealing, but got another bout of the tongue candidiasis. So now I stick to it religiously. Hopefully your mum is on antifungals, I was given fluconazole. If not she should be, a microbiologist can advise on suitable treatment. My GP said once it goes beyond the mouth there is a risk of it causing sepsis in immunosuppressed people like myself. If the GP isn’t helpful you can phone the appointments number explain about the candidia infection, and they may speed up her appointment. I did this when a recent CT found I had pulmonary fibrosis, my GP had sent a routine referral prior to the CT, and the hospital weren’t seeing routine patients. When i contacted the appointments team I was given an appointment for 2 weeks time.

I should add I also use inhalers including Fostair, it can cause thrush and it’s important to gargle after use to remove any of the powder residue. Good luck 🤗

[JetJet in reply to Runrig01]

Thank you Maureen, a lot of new info to absorb there. Thank you.🙂

[Cloudancer in reply to Runrig01]

Fabulous advice especially re gargling post fostair-its so easy to forget and then pay the price with fungal infections.It may be a placebo effect but I have plain Greek yogurt every day which does seem to sooth infected mouth and other bits.

Stay well Maureen Gibson

[Hidden]

Oh dear, why do these GPs mess about when they know nothing about bronchiectasis? Remember I am not a doctor but I have 68 years experience of living with and managing bronch and I know the guidelines for treating it.Firstly, one week of any antibiotic is useless for bronch. It has to be two weeks of a substantial dose.(see guidelines) Penicillin based antibiotics tend to be useless and certainly are useless for pseudomonas for which cipro is the only really effective oral antibiotic although GPs do love to dole out doxy and some who cannot tolerate cipro take it as being better than nothing.

Fostair contains a steroid which is notorious for causing candida in the mouth and throat. When she coughs a sample to be looked at any candida in her mouth will get into the sample and this is most likely why they keep finding it.

Your Mother cannot wait to be eventually referred to a respiratory consultant. She may not even get a bronch specialist when she goes. Look on the internet for a bronch specialist near you. They are usually at large teaching hospitals. Go for a bona fide bronch specialist not a general resp consultant with an ‘interest’ in bronch. Ring the secretary of the consultant. Explain that your Mother needs expert help asap ( stress her age) and ask if the con will see her if she is referred. Armed with that and the consultant’s name, go to the GP and INSIST on an urgent referral. Do not leave until you get one. Your Mother cannot afford to hang around whilst those who don’t know what they are dealing with mess her about.

I am afraid that with bronch we have to be extremely pro active in our own interests and vociferous in sourcing the right doctors and treatment.

I know that you probably didn’t want to hear that but there is no getting away from it,

I hope that it helps you get the right help for your Mum

[JetJet in reply to Hidden]

Hi Little Pom,

It was your advice that even got me to get her a referral and she has been referred to the hospital where the private consultant works under the NHS. I will call the secretary today and thank you again. I did wonder if the candida was coming from her mouth. I wonder if the negatives of Fostair outweigh positives for my Mum. Many thanks

[Hidden in reply to JetJet]

Good about the consultant. Yes move it on. I use fostair and I get candida in my mouth. I use nystatin drops. I think the benefit of fostair for reducing inflammation in bronch outweighs the negative of the flipping thrush. Not all bronchs need it though.

[Hidden in reply to JetJet]

Absolutely right about candida most likely being a contaminant rather than a pathogen. I believe we are all colonised by candida, even those who do not use inhaled steroids. Normally we live side by side without a problem. However there is a remote chance of candida lung infection if your mother is immunocompromised. Absolutely right about requiring 2 weeks of a high dose antibiotic in a bronchiectasis flare-up. Doxycycline would be first choice unless the infecting agent is pseudomonas in which case ciprofloxacine is drug of choice. The latter is not without its problems especially in the aged population.

[JetJet in reply to Hidden]

Thank you so much. I have messaged the private secretary to see if we can get her seen . Would anyone expect an improvement after 5 days if doxycycline if this was appropriate for the problem. She did say she coughed up a lot last night..don't know if that is a sign of it clearing? Thanks again for your help.

[Hidden in reply to JetJet]

I often don't feel any better until nearly at the end of the 2 week course...

[JetJet in reply to Hidden]

That is really good to know. Thank you x

[sassy59]

I see you’ve had some great replies and Littlepom tells it like it is thank goodness. I did wonder what was the point in making a lady of 93 wait 18 weeks to see a consultant? She needs to see someone NOW. I wish your mum well and hope she gets the help she needs. Xxxx

[Patk1]

HiyaBronchiectasis infections should always b treated with at least 14days antibiotics.

It depends what the infective organism is but i do find doxycycline good.

Erdosteine/erdotin- i was always told not to take for longer than 10days

Carbocysteine is the usual mucous thinner taken twice or three times a day.

Im on fostair( + another steroid puffer) + ventolin.its usual to use ventolin as well as fostair.best check with dr or chemist.

Mum shld always rinse mouth + gargle aft using fostair to prevent thrush

At least 2x day minimum,lung clearance is needed with bronchiectasis to get rid of mucous in lungs to help prevent infections( read up on lung clearance techniques/ huff technique).

All the best x

[Izb1]

You have had alot of good replies and I do hope that you can get the secretary to move forward the appointment. I stand with Don that doxy without steroids doesnt do much for the infammation, ask your gp if she would would be better having these combined with the antibiotics. I do hope you manage to get things sorted x

[JetJet]

Thank you all so much for your very helpful replies. Just a quick update on Mum.. The most amazing secretary that I had been in touch with regarding an minimum 18 week waiting list NHS referral/appointment called me at 1pm yesterday to say if I could get my Mum to hospital in 60 mins then a slot had become available. In short the consultant has plied her with 14 days strong antibiotics and steroids and is running various tests to check her immune system. She will also be offered physiotherapy and to discuss aids that may help her. I feel so relieved that she is now under the care of someone who understands Bronchiectasis. Thank you all for pushing us to seek help beyond our GP who has been great but also admitted defeat. He will also receive guidance on a rescue pack for Mum . Now I just have to hope that Mum can tolerate her latest treatment and get through the next 10 days. Maybe a probiotic shopping trip required. Again a massive thank you for all your help/ experience/guidance and support. So appreciated. X

[Patk1 in reply to JetJet]

Make sure she takes pills with something to eat and steroids as early as possible as they can keep u awake.i hope mums feeling better soon x

[JetJet in reply to Patk1]

Thank you so much. I have suggested she takes steroids as soon as she wakes and then cipro with breakfast and dinner ( no milk) and not to take her 3 weekly normal antibiotic. I really hope she feels better soon and doesn't feel awful on Cipro. X

😀