Hi I posted a month ago regarding my current situation. The history is a bit complicated but briefly diagnosed with mild Bronchiectasis in 2020 after a CT. Not seen as it was lockdown. I had a few phone appointments plus lung function Tests then discharged in 2023. I have been bringing up yellow phlegm since 2021 most days. Last year I had a chest infection possibly Pneumonia ( the GP's could't make up their minds) in March then again in October which never really cleared in my opinion. I had only been given 5 days worth of Doxycycline. A new GP I saw in December requested sputum samples & the results showed Pseudomonas & Staph Aureus. This is all in my previous post. Repeat samples without treatment in January showed no Pseudomonas but Staph Aureus & Upper respiratory flora. I had a 7 day course of antibiotics arranged by my self through 111 & then a call with my GP who decided to refer me to Respiratory.
I had my Respiratory appointment on Monday & I feel quite let down. The Dr I saw listened to my history then spent a lot of time on the computer as there was quite a lot to read. He said I may be colonised with Pseudomonas & that it was hard to get rid of but often sits there not causing any symptoms. He said as my Bronchiectasis is mild there wasn't anything more to do other than to have 2 weeks worth of antibiotics & sputum samples first if an infection is present. My GP's already have this info but never act on it. He said he would put it in his letter. I asked if I could be seen by a Bronchiectasis specialist his response was that's a good idea but as yours is mild then they wouldn't see you. His conclusion was 2 weeks of Ciprofloxacin the repeat sputum samples & then the GP can look after my care. I think I have been discharged but a little unsure. I feel quite let down. I rang Asthma & Lung UK who were very helpful so I have the information I need for future infections etc they were so kind listening to my woes. I will await the clinic letter then take it from there. I just feel dismissed really. Moan over sorry.
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Otto11
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I had an awful staph aureus infection last yr,took 3-4mths to clear.if u get towards end of course × mucous still looks infected,see dr. Bronchiectasis must always have 2wks minimum antibiotics. I'd request gp puts note on records that u can put samples in when u need to.id insist too on rescue pack.Sorry yr disappointed.in current situation,many of us are,unfortunately,which is bad.sounds like specialist knows the reality of how things are at the moment
The treatment that the consultant you saw recommended was generally correct but unfortunately, until now you have been treated by people who know nothing of bronch. It makes me spit tacks when I hear a bronch patient being dissuaded from sourcing the best care. Lazy and dismissive!You absolutely need to be under the care of a bronch specialist or with the inadequate care of the GP and such as 111 your bronch will not stay mild for long. Once pseudo is there it lurks but doesn't always show up on lab plates. I have had pseudo since 1986 but my last test showed nothing. My consultant knows it is there and treats my by how poorly I seem and the state of my sputum. From your posts you are more aware of how you are than the doctors who see you. Which is about par for the course with us bronchs.It is your right to have a bronch expert who has far more training and experience in bronch than general respiratory consultamts and can advise your GP on what to give you. GPs tend to respect them more than general respiratory clinic consultants. They also have their own physios and access and knowledge of different forms pf treatment. Look on the website of your nearest big teaching hospital for a bronch expert. Take the name to your GP and insist on a referral. Don't ask- insist! Don't take no for an answer.As your GP has been useless at treating you properly when you have an exacerbation you need to be pro active and tell them what to do. Good luck
Thank you so much for your reply & support.as always As I had gone to this appointment with the knowledge from you & others here I tried to be pro active but unfortunately it was falling on deaf ears. It was not a Consultant I saw I expect a Registrar & I had hoped that he would ask the Consultant to come into the appointment at some point but he didn't. I just felt let down really. It's positive that it's mild I would just like to be sure I have a proper plan in place from someone who understands fully. & I have support when required not 7 weeks later by my GP. The appointment was at Leeds LGI a huge Teaching Hospital so I was expecting more. Hence the disappointment. When my GP receives the letter then maybe I can discuss it more with him. I went to the practise yesterday to collect the sputum pots but as they had no clinic letter I didn't get any. Why do they make things so complicated ?
You certainly have been through the mill, I hope you get better soon, somethings take ages to get rid of, I find hot herbal tea like lemon and ginger soothes the chest.
Awfully scary. I'm honestly afraid to start them. I already have chronic Fatigue Ra Epilepsy Hypothyroidism plus a lot more. I've had a partially torn tendon with RA swelling so don't want another. The side effects are very worrying. Plus im 70 in a few weeks.
Sorry to read. Bronchiectasis is a chronic condition so your symptoms will persist ie coughing, mucous.... And it does impact on life. Hopefully you can tolerate ciprofloxacin & it gets rid of the pseudo for now.
A referral to a bronchiectasis specialist would help you & give you some reassurance even if appts are few & far between.
Thanks that was what I was hoping for. it's positive that it's too mild to be referred but i'm concerned with no back up things could just get worse & with my track record most likely will.
You should read up to date information on Ciprofloxacin. It has been updated on NHS site. I was given it in 2018 at the highest dose which I shouldn’t have as i was over 60, on prednisolone and had RA. I could not get out of bed as all my tendons were affected. I did call in my GP who said it couldn’t be the Cipro as it was a rare side affect for achilles tendonitis (the only tendon not affected for me) Maybe its rare because doctors don’t want to report it! I stupidly continued to take it for most of the course. I now have rotator cuff ,bicep tears and hand tendon ruptures since 2020. All I am saying is take care as many people can tolerate it. Make sure it is prescribed correctly and watch out for tendon problems.
Yes I know, have done it before. First time was through my GP for Opren in early 1980’s. Last time I did it on my ipad and had so much to input with medications etc, got to the end and it disappeared. Couldnt face doing it all again at the time and never got round to trying later.
Thank you. That's awful. I'm sorry you have had to suffer these tendon tears. I've read the leaflet & there are some very strange side effects. I have already had a partially torn tendon in my ankle from RA swelling & can't risk another. Poor you they are so painful. I have permanent Enthesitis & Tennis & Golfers elbow too.
Well i had a tendon rupture to my left thumb repaired in 1985 then no problems with tendons till shoulders and bicep in June 2020. Can only use thumb and index finger on both hands now plus as you say elbow problems. I dont usually cough up much with bronchiectisis but I know i have pseudomonas so had to go into hospital for 14 days IV antibiotics nov/dec last year when i had an exacerbation. You definately should be prescribed 14 days antibiotic treatment when neccessary. Good luck
After I was diagnosed with bronchiectasis, the consultant placed me in the care of the local respiratory team. That was OK because they are led by a respiratory physio and are very good. If they have any concerns I am confident that they can get back to the consultant pdq. When I had a bad attack during lockdown they were excellent- got me on Azith and with a spacer as well as on Doxy. This is the level of care that you should be having. You need to know that there is someone knowledgeable to call if things go wrong. I'm afraid no other health authorities seem to have a similar system. (This is Mid and South Essex.)
Yellow sputum does not sound all that good to me. I can only suggest you keep on at your surgery until the sputum is clear or white.
Thanks Alberta 56 I'm going to try. My hospital is Leeds LGI they do have a Bronchiectasis & Cystic Fibrosis specialist at a different hospital in Leeds where I had hoped I could be referred. It's positive that the Dr I saw dosn't think it's worth sending me there but to be sent away with 2 weeks of antibiotics & that's it was a let down.
I really feel for you. I was diagnosed with mild Bronchiectasis and I’m seen every six months by a respiratory consultant who specialises in vasculitis my autoimmune disease. I’m also colonised with pseudomonas and use a nebuliser daily to keep it at bay. Have you had rituximab? I’m severely immune suppressed since having it which leaves me unable to fight these infections without antibiotics. Sounds to me like a course of iv antibiotics would really help you. Autoimmune diseases go hand in hand with Bronchiectasis it’s a shame many doctors don’t realise that. Swizzy has made some excellent suggestions. I hope you’re able to follow through on them.
Thanks for your reply. I have RA amongst several other AI diseases Asthma Excema Pustular Psoriasis Hypothyroidism plus a few others. Yes I'm greedy! Yes I had rituximab from 2017 to 2019 which was when I had Pneumonia & had IV anti biotics in hospital for a few days. It was 2 months later on a CT monitoring Lung Nodules that the Bronchiectasis showed. It's all linked for sure with one thing leading to another. I'm currently prescribed Abatacept now as it's gentler on your lungs I believe. The big problem is that I have to stop it every time I have the antibiotics which will eventually make it less effective. I'm sorry you have the Pseudomonas too. The Dr did mention the possibility of being colonised. I have a rheumatology appointment next week by chance so will go armed with a list of questions.
Sooner than later. I believe that a long infection in 2014, with SA, caused my Bi-basal Bronchiectasis, diagnosed through a CT scan and by seeing a great doctor at the hospital. It was then that I got the IV AB. The long wait was because of disarray in my GP surgery. "My" doctor was away having a new hip, and things only got cracking when he got back to work. A week after I got rid of SA, I had another infection, sorted by an oral AB.
Bless you. Yes everything takes so long. Our GP's is currently a 5 week wait for routine appointments unless its urgent same day appointments. Most of our GP's have left the practise so it's either a new one who dosn't know you or your history or a locum. then things get muddled & then there is the waiting time to be referred which can be months. I'm glad you have things under control now though.
I have bronchiectasis but mine isn't mild anymore. Had great care under a teaching hospital but sadly moved house and put under local hospital with a general respiratory Consultant. My health deteriorated drastically and ended up spending more time in hospital with IV antibiotics than I was at home. Eventually insisted I was transferred to another teaching hospital with bronchiectasis specialists. Care is better but too much damage done under care of local hospital so now it's just about managing my condition as it is today. Learnt from this forum that you need to be under a bronchiectasis specialist but sadly too late to reverse damage done by those that do not truly understand this condition. Can only reiterate therefore what others have said and that is to insist on referral to bronchiectasis specialist and don't take no for an answer. We all know it shouldn't be this way and you have to be your own advocate but you know yourself better than anyone and if something doesn't feel right keep shouting. I wasn't very popular at my local hospital because I kept shouting but I knew I was right and taking advice from others on this forum prompted me to insist on being transferred to another hospital with the specialists that I needed to be in the care of. I'm in no doubt whatsoever that I wouldn't be here today without listening to others on this forum and taking the plunge and insisting on that referral and transfer of care.
Thanks & i'm sorry you have also had the run around. this forum has been a great help to me & I have learned so much. Asthma & Lung UK have also been wonderful with their advise. I'm going to wait for the clinic letter & also speak to my Rheumatologist on Tuesday as I have an appointment there & then I will decide what to do next. As it's mild I don't want to make a fuss but I need to have a plan in place. Waiting since October for antibiotics in ridiculous especially when tests showed Pseudomonas & Staph aureus.
Ciprofloxcian should not be prescribed unless there are no other alternatives. I was ill a month ago had to get an emergency appointment, was offered augmentin or cipro, I said I can't take augmenting, so ended up taking the cipro. Both my Resp. cons. went bananas when they heard. I am a woman 60+ and taking a mass of steroids, but fairly fit. The best of the Floriquins is Moxifloxacilan. which is the newest but they can all cause tendonitis. I got a month long exercise ban.
Oh goodness. I hope you are ok now. I have just read up on this & the side effects are really scary. The problem is that i'm 70 in a few weeks I have RA & not very mobile & also have Epilepsy which is on the list on the information as being a potential issue. I also have Bakers's cysts which could be a problem I only have steroid for my Asthma. I havn't heard of Moxifloxacillin. I'm also trying to build up my exercise not decrease it.
"Moxi" is one of the newer Floriquins, Also known as avelox. Still not great but sometimes the only choice. As I was taking Azithromycin 3 times a week, it used to be almost my only choice when I got an infection. Cipro does kill bugs but the side effects are not great and its to be avoided particularly for women steroid users over 60, and in people who do a lot of exercise. (like me) When I have to take these drugs I get an exercise ban to go with it!!
Hi i suffer with the same but lu ky i havr a good hest consulant and a good bunch of respiroty nursrs that i tutn to if my 14 day emergency pack does not ckeat my ingrction i call them havr a bkood test to check my infrction matjerz and if they are still too high i am put on a 14 course of IV ANTIBODICS which settle things down i wud try to speake to uour consulta y and see if u can try that
Thanks. I don't have a consultant which is the main problem I think. My GP will be informed of this in the clinic letter. they have been told already but choose to ignore it. I will speak to my Rheumatologist next week though as I have an appointment with her. Hopefully she can shed some light on the next step (that's if there is one).
Yeah, I had a respiratory appointment last year and was told that despite the fact I get out of breath getting dressed some days and out of breath on hills and stairs most days, and have nails that turn blue on exertion (I am only 30, was 29 at the time, not overweight either) that because I don't have a cough that I am asymptomatic and was discharged. By the time I get seen again in August I will have been waiting over a year for another appt. They can be severely disappointing.
It really can be so hit and miss depending on who you see! Sorry to hear you have been given the runaround!!
I am sure there has been an issue with Ciprofloxacin, it was in the press recently? I took it back in 2006 and had terrible time and beginnings of tendonitis, I remember having the biggest panic attack not knowing what was going on with my body feeling as it it was being pinched everywhere, please question this...
I do believe you need to be under a Bronchiectasis specialist, this would be a priority, your GP should be able to track someone down at a specialist hospital and make a referral.
I hope you are feeling better, the Pseudomonas is a difficult bug to contain, mine has been going up and down for over 10 years, I really hope you have better luck than me!
I wish you good luck and good wishes with your health.
It seems that you have been let down...hope you're well now and get want you need from NHS...they are normally fantastic...but it only takes one to ignore you ..and you feel so isolated..wish you well 💜..Gnasher 🐕
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