Pseudomonas again

[Shrimpy-13-22-25]

I have bronchiectasis and have pseudomonas again. The last time was in December, the 4th in 5 months. I am resistant to Ciprofloxacin. In December I was put on intravenous Tazocin for 14 days in hospital. This was given intravenously and my veins kept collapsing every time blood was taken or a cannula fitted, so that isn’t a option now. My doctor has put me on my usual co-amoxiclav for 14 days. Back in 2017 I was given Bramitob, but my hospital doctor says it’s only available for those with cystic fibrosis. Does anyone know what other medication is available that will kill (ever hopeful!) this latest outbreak?

[Hidden]

I’m sure one of the members with bronchiectasis will be along soon, but if you have chronic pseudomonas (or are struggling to get on top of it) then inhaled antibiotics should be a mainstay. You use IVs to get the active infection under control, then try and suppress it in the longer term using nebs; to the best of my knowledge using the BTS guidelines for managing bronchiectasis (link below), Tobramycin nebs are definitely still available to ncfb patients. Even if Bramitob is a no, there are other brands as well as a generic version. Aside from tobramycin, colomycin is also licensed for use in ncfb, as I believe is nebbed gentamicin, and potentially long term oral macrolide use e.g. azithromycin, which some people with pseudo find really useful when taken three times a week. My daughter has cf and chronic pseudo, and where she has confirmed cipro resistance, doxycycline is known to have a small degree of antipseudomonal effect, so we tend to use that as her first line oral now, although we do occasionally throw some cipro at her first, just in case: in any lung disease with prevalent bacterial infection, in vitro resistance doesn’t always correlate to in vivo resistance and vice versa, so clinical response is what’s important.

The BTS guidelines I mention can be found here and are a very useful resource for patients with ncfb:

brit-thoracic.org.uk/docume...

The other issue from your post is IV access: have you ever asked them about a midline rather than peripheral cannulas? If you’re at a hospital that says they can’t do that, then you’re at a hospital that isn’t geared up to properly manage bronchiectasis, imo, and should look to move. Given that your consultant doesn’t seem to know the score with nebbed antibiotics, I have to say I would encourage you to consider moving anyway.

[Shrimpy-13-22-25 in reply to Hidden]

Hi Charlie-G, thank you so much for you helpful answer. I linked onto BTS guidelines but couldn’t find Tobramycin mentioned, though there are a lot of pages to go through! If you could give me a rough idea where about it is mentioned I’d be grateful. I had contacted them recently but they informed me they are unable to advise on individual cases and referred me to BLF, and I have emailed them and await a response. I have tried taking Azithromycin 500 but had severe breathless on the days I took it, so asked dr for 250 to try and see if my body can tolerate it. I didn’t have any knowledge about midline, but I do now, thanks. As an asthmatic one of my triggers is perfume and although the Trust in charge has a ‘discreet’ perfume policy the local hospitals respiratory ward is the worst place for perfume so, as you’ve suggested, I’ll have to find another hospital, possibly out area. I hope your daughter keeps well. Thank you for all you help and advice, I didn’t realise how ignorant I was about lungs until I joined the forum and heard from you and others. Why are we kept in the dark so much?

[Hidden in reply to Shrimpy-13-22-25]

It’s under Appendix 3, which is the table of long-term antibiotics considered appropriate for managing ncfb. It mentions both Tobramycin and Tobi branded nebs, but I’ve looked into it a bit more this morning and the NICE recommendations on Tobramycin nebs in ncfb dated from 2017 also mention bramitob; the only caveat to Tobramycin use, bramitob or otherwise, is that as long as there’s susceptibility, gentamicin and colomycin are usually the preferred first choices to try due to the lower cost. If a patient can’t tolerate these, or there is a good clinical reason to prefer Tobramycin, then Tobramycin can be prescribed in whatever way the consultant feels is appropriate. When you originally mentioned what your consultant had said about bramitob, I thought it might be a licensing issue, but it turns out that all inhaled antibiotics are actually used off-licence in ncfb, so I think it’s a case of whoever’s looking after you not having a clue what they’re doing.

I cannot urge you enough to find a genuine bronchiectasis specialist: I haven’t been around on the boards for awhile, but from her personal expertise of ncfb, I’m sure Littlepom has given you the same advice and suggested how to do that before. Hospitals that have tertiary cf units, which are usually large university/teaching hospitals (or the Brompton Hospital if you don’t mind travelling or you’re relatively local to south west London), are good places to start looking, but any large university hospital will likely be an infinitely better bet than the care you appear to be receiving now.

[Hidden in reply to Hidden]

Thank you Charlie, I have tried to impress upon shrimpy the importance of having a bronchiectasis specialist but she had not taken my advice.

[Shrimpy-13-22-25 in reply to Hidden]

Hi Littlepom, I am trying to find specialists in my area and will continue to do so. If there’s list of nhs specialists I haven’t found it yet. From what kind people have posted there certainly seems to be plenty of different medication and treatment, and I’m determined to find the best for me. Best Wishes

[Hidden in reply to Shrimpy-13-22-25]

Hi shrimpy. You need to look on the websites of big teaching hospitals that you are willing to travel to to find bronch specialists. For bronchiectasis there is a programme of treatment, using different antibiotics and delivery methods according to need. I have been through these with you before and it can all be found in the guidelines for bronchiectasis which were co written by my consultant. As I have said before, it is only the specialist who can decide on the programme, source the drugs and the delivery system. Contrary to what they led you to believe when in hospital, it is very possible for you to have IV antibiotic when your veins collapse by inserting a midline and then switching to nebulised antibiotic afterwards to keep the PA numbers down to an acceptable level.

Unfortunately there is a lot of ignorance and misinformation about antibiotics and bronch treatment. Much of it coming fom GPs and some general respiratory consultants. The answers which you had today show that some people have excellent consultants and understand their treatment plan whilst others are very confused.

Charlie is an expert in cystic fibrosis because his daughter is a sufferer. I respect him very much,as he does me because of my 68 years experience of living with and managing bronch with the advice of expert consultants. Obviously some of the treatments overlap although ncfbe patients are denied many drugs which are given to cf patients. There are many reasons for this which I won't bore you with.

I do hope that when you take the advice of several of your respondants, Charlie and myself, you are successful in finding a really good bronch specialist who can put you on a good plan and really improve your quality of life.

[Shrimpy-13-22-25 in reply to Hidden]

Hi again Littlepom, thanks for reminding me about the bronchiectasis specialist. Is the article on guidelines for bronchiectasis available to view online. Is would certainly help me to get to grips with this disease. I feel I’m going round in circles! I would be interested in knowing the reason ncfb patients are denied those available to cf patients, and you wouldn’t bore me with it. With your 68 years experience in living and managing bronchiectasis I’m sure you know far more than many doctors and your knowledge is invaluable for those like myself.

[Hidden in reply to Shrimpy-13-22-25]

The main reason is money! And the woeful lack of research in the use of these drugs in ncfbe although we have acted as a control in studies into the use of the drugs for cf and it has been found that many of them are effective for us too. We have NICE to thank for the refusal.However, things are getting better. We were refused tobramycin and meropenem for nebulisation at first but have been able to have them for a time now.The guidelines are on a site meant for medical professionals to read ( although many don’t bother as is obvious). They are easily accessible to anyone to read but I don’t exactly know which site to enter. Hopefully Charlie or one of the other clever internet users will point you in the right direction. Or you can just google ‘official guidelines for the treatment of non cystic fibrosis bronchiectasis’ and hope it comes up.

You are right, you are going around in circles because you are getting useless advice and treatment from the medics whom you have been seeing so far and no proper plan. Unfortunately, no matter how much very commendable research you do into the drugs and delivery methods used in bronch, you cannot prescribe or access them for yourself and seem to be wasting your time hoping that doctors who are currently treating you will wise up any time soon. I have all of my fingers crossed that you will be able to find a good bronch specialist.You deserve much better care than you are getting.

[Shrimpy-13-22-25 in reply to Hidden]

Thanks for that Littlepom, everything usually comes down to money. I found the NICE…. ‘official guidelines….’., most helpful. On page 6 there is mention of Tobramycin being used for 3 months after1st line treatment of 2 weeks of Ciprofloxacin (resistant to this) and 2nd line treatment of 2 weeks of antipseudomonas beta-lactam (piperacillin?), so I will inform my doctor and the hospital doctor so at least they’ll know Tobramycin is available for ncf patients. I’ll also enquire what plan my hospital doctor has in mind for me! If I find a specialist with 30 mile radius I’ll let you know. The waiting times to see consultants at some hospitals is horrendous. Thanks again for sharing your vast knowledge, it’s appreciated.

[Hidden in reply to Shrimpy-13-22-25]

Just for info. My last IV was ceftazidime ( piperacillin isn't so affective for me and gives me a rash because it is based on penicillin)and am now nebulising meropenem. I have nebulised ceftazidime, tobramycin and colistin over the years. As you see, we are all different and general respiratory consultants are way out of their depth with us. I do hope that you find a bronch specialist. It is possible to ring their secretary ( they are usually very helpful), explain the situation and ask if the specialist would be willing to take you on if your GP refers you. That way, the specialist will know who you are and you will be armed and one step ahead when you go to your GP. Good luck.

[Shrimpy-13-22-25 in reply to Hidden]

Littlepom, again I have learned something new from you as I haven’t heard of some of those antibiotics. As soon as I find a specialist I will certainly contact the their secretary and explain the situation. I spoke to my GP on Friday and expressed my need to see a specialist, so can’t see any problems 🤞. Thanks again, keep well

[Foxy79 in reply to Hidden]

Hi I'm foxy79 I have serve copd broncechtisis respiratory emphysema sistic fibrosis odimia pseudomnas I'm on NIV bibep machine and oxygen with nublizer with other antibiotics reading to your site I had smiler problem and I was on gentamicine colymomicine they can give you antibiotics through nublizer if ciprofloxacin doesn't work but as you know tazacin meropinin colomycine etc only via iv that's only antibiotics effects quick on pseudomnas. I have antibiotics via nublizer I know or try to ask about co-tromozle I'm on that better than Aztrmicine again you might need to do your medication review may be it's not helping you the way it should are you on amophyoliine tablets helps open up your lungs most people with pseudomnas are on that hope you get help and feel better soon take care

[Hidden in reply to Foxy79]

Cotrimoxazole is also known as Septrin and completely ineffective against pseudomonas, unfortunately. Aminophylline is a type of bronchodilator used for acute, reversible breathlessness/wheeze as found in severe asthma and COPD, and nothing to do with pseudomonas at all. Also, not to question you about your own health, but with a diagnosis of cystic fibrosis as you say you have, you wouldn’t be diagnosed separately with copd and bronchiectasis because all that lung damage would be a direct result of the cf. Which mutations have you got?

In any event, I think you meant to reply to shrimpy rather than me, as they’re the one in need of treatment.

[Foxy79 in reply to Hidden]

No problem I was trying to help you looks like you know much better than everyone good luck

[Shrimpy-13-22-25 in reply to Foxy79]

Hi Foxy, I am so sorry to hear about your lung problems, it must be hard for you. I’m starting Azithromycin 250mg (instead of 500mg) on Monday for 3 days a week, so hope that helps. I hope that you’re as well as you can be. Best Wishes

[Morrison10]

Hi, I was born in 1935 with PCD, see hub on here. Wasn’t diagnosed until I was 32 when have bronchiectasis. Remember joy when first antibiotic became available when I was about 25. Most antibiotics don’t work for me now, keep 3 in hand. Good one is Septrin Forte, also Azithomycin, currently taking Ciproxin 750, doesn’t seem to be getting rid of pseudomonas, that’s alternating with steno Maltophilia. Have had six iv courses with cannula, at home, Consultant wants me to have course with line, set up at hospital and then do own at home. At moment not going anywhere, pick up infection too easily, my Consultant has wanted me go to hospital, but too risky. Also can’t drive afterwards, but my two daughters are both disabled and don’t live locally. My younger daughter has three fractures on leg, healing slowly, older daughter has advanced MS. Hope you can get good treatment soon, and if not happy with Consultant, look on line at qualifications of respiratory consultants in your area. That’s how found good one now seeing. Good luck, and best wishes, Jean

[Shrimpy-13-22-25 in reply to Morrison10]

Hi Morrison10, you and your daughters seem to be having a rough time of it lately which I was sorry to hear about, and I hope things improve for you all. It’s terrible how lung conditions make you prisoners in your own home. I’ll make a note of the medication that you take if you don’t mind for reference purposes. Unfortunately some antibiotics such as doxycycline and flucloxacillin can give me hallucinations, diarrhoea etc. Many increase my sun-sensitivity and give me blurred vision, but that’s how it goes. Hope things improve for you soon. Best Wishes

[Alberta56]

Sorry you're having such a rotten time. Wise words from Charlie. Surely medicines should be dished out according to clinical needs, not restricted to a limited group of patients.

[Shrimpy-13-22-25 in reply to Alberta56]

Hi Alberta56, yes, Charlie is certainly wise and helpful. With regard to getting the medication you need, I can’t even get enteric coated steroids while in the local hospital, and have to bring in my own. Clinical needs don’t count when £ is involved. Moan over! Hope you’re keeping well. Best Wishes

[Alberta56 in reply to Shrimpy-13-22-25]

That is very sad and utterly disgraceful.

[Hidden in reply to Alberta56]

It’s a bone of contention: whilst tobramycin isn’t one of them, cf patients have access to antibiotics that ncfb patients don’t have access to even though the bacteria being treated are often the same. Some of it is down to lack of studies in ncfb, but you would think that would be quite easily rectified. Some of it is probably that ncfb isn’t considered to be as rapidly life threatening or life limiting in the same way that cf is, however with the cf modulators that have emerged, how life limiting cf will be for some patients going forward may well change. I’m not justifying it, and as some other members with ncfb know, I don’t agree with the situation in the slightest, but that’s probably a factor in it. In this case, and having double checked, I don’t know that Bramitob has been reserved for use with cf patients, I think it’s that the consultant is further talking from somewhere other than their mouth: the BTS guidelines make reference to generic tobi, as well as Tobi brand nebs, but the NICE recommendations on Tobramycin neb use in ncfb from 2017 do also mention Bramitob by name. Bottom line is the same drug is definitely available to ncfb patients via other manufacturers if other inhaled antibiotics are not effective.

[Sarahk1000]

I’m on colomyin nebulizer twice a day for life. It keeps the pseudomonas numbers down rather than eradicates it. Most chronically ill people don’t ever get rid of the bug completely. I’m not sure healthy people do either if I’m honest but I’m not 100% sure on that one . There are very few, 3, I think, antibiotics that can tame the pseudo bug but I think once you have this infection I’m pretty sure you have it for life whether your future sputum tests are clear or not. It has an unhealthy attachment deep down in the lung that most tests don’t find in every sample so even if you are told you are clear of it, it’s probably lurking somewhere deep down where you’ve been unable to bring it up in your following samples. I hope you find something that works for you

[Mooka]

Charlie_G has given you spot on advice. I doubt the co-amiclav will help much. You may feel better short term but it will be back. Personally I had a two week course of two different antibiotics through a midline administered at home by me. Ever since I have nebulised colomycin twice a day. Pseudomonas hides in the pockets in your lungs just waiting for the most inconvenient time to come out party. You definitely need a Bronchiectasis specialist to treat you. Mine comes with a team of specialist nurses that are brilliant and help with the midline. I’m sorry not great news for you in the short term but at least you know the way forward. I hope you feel better soon.

[Hidden]

Hello Shrimpy and others, I have bronchiectasis and I have permanent pseudomonas in my lungs. I saw a respiratory consultant a month ago (only time face to face, I was diagnosed two years ago). She showed me my lung x rays from two years ago and one month ago. Both showed white clouding at the bottom of my lungs and a narrow area rising on my right side. I did have several courses of ciprofloxacin two and a half years ago, when the pseudomonas was spotted( but not the bronchiectasis) but these courses did not get rid of the pseudomonis. Since then I have focussed on keeping my lungs clear by using different positions to clear it all (rather a lot of it!). Anyway the consultant said I had on-going infective changes, but as the x rays were virtually the same as each other, she did not recommend any treatment other than use the ciproflaxin if I thought I had a flare up and keep taking the mucous thinning tablets. Seems to me there are many different schools of thought on this, but I don't know if she had much experience in bronchiectasis because after a few minutes she abruptly terminated the consultation saying she "had to go now". I manage life with my condition but I get frequent pain and tenderdess in my chest, relieved by the mucous clearance, and have a lot of general pain and fatigue, don't know if this is connected, didn't have the opportunity to tell her this though!

[Hidden in reply to Hidden]

It is obvious that consultant was a general respiratory one and has very little knowledge or experience of bronch. There are very specific guidelines for the treatment of bronchiectasis and they don't bother to read them! They are not different schools of thought but differing degrees of ignorance. You need to find yourself a bronchiectasis specialist. They are usually at large teaching hospitals. Take the name to your GP and insist on a referral. Don't take no for an answer this is the deterioration if your lungs due to poor treatment and the duty of care towards you. A bronch specialist, given your current problems would probably be giving you 14 days IV of one of the antibiotics which tackle pseudomonas, followed by long term nebulised antibiotic to keep the numbers down to a level that can give you a quality of life.I'm afraid that we bronchs have to be proactive in our own interests and vociferous in sourcing the best treatment. Unfortunately I have become sick of hearing myself say this and unfortunately some people never listen and just go round in circles with useless medics.

[Hidden in reply to Hidden]

Hello Littlepom, thank you for taking the trouble to respond to my comments. I have been worrying about my condition for a long time now. I moved house just before the pandemic started, my previous doctors surgery was pretty useless, they never diagnosed the bronchiectasis as they said I didn't "qualify" for a CT . After I moved I got a CT scan at last but was diagnosed late February 2020, so never saw anybody after the diagnosis, a temporary Respiratory Consultant rang me a few times, sent me for blood tests but no treatment apart from carbocisteine was suggested. Any way, don't want to bore you with all this! Thank you very much for your advice I will see if I can find a proper specialist.

[Hidden in reply to Hidden]

You aren't boring me at all. We like to help people. I do hope that you find a good bronch specialist. They will kick your GP into touch and advise them of your treatment. Good luck

[Hidden in reply to Hidden]

Thank you.

[Shrimpy-13-22-25 in reply to Hidden]

Thanks you.

[Shrimpy-13-22-25 in reply to Hidden]

Hi, I just wonder how many of us have felt relief when the consultant has informed us to carrying on with the medication we’re on, only to realise afterwards that more advice was required from them. Perhaps, like me, you require someone with specialist knowledge?Please do email her or her secretary and inform her of your other symptoms and see if she can help?

Hope you’re feeling better soon.

[Hidden in reply to Shrimpy-13-22-25]

Hi Shrimpy, thank you for replying. I was actually quite shocked when I saw the shadow on the lung x rays, but she was so laid back about it! I have been totally confused since then.Usually I would have taken my husband with me but nobody extra allowed in the hospital at the time, visitors had been banned for example. I will try to find a specialist. Many thanks for taking an interest in my problems.

[Shrimpy-13-22-25 in reply to Hidden]

I hope all goes well for you. Kind members suggested British Thoracic Society Guidelines for bronchiectasis, there’s also asthma. Well worth a look.Members will be here for you, and it’s great because many know so much and are very willing to share their experiences and knowledge as they have have the same illnesses, they really are a treasure. Hope you get your specialist soon

[Hidden in reply to Shrimpy-13-22-25]

Funnily enough I was doing some research yesterday and stumbled upon the British Thoracic Society, what a mine of information. Thanks again for your help.I hope you feel better soon.

[Joy123]

I’m sorry you’re not feeling good again, I’m in the very same situation after 4 weeks IV’s over Christmas/new year. I think the main oral antibiotic used for pseudo is Cipro but lots, like me are allergic to it (not good side effects). I take Septrin but it doesn’t seem to be working this time so I’m back to drawing board too. Good luck. I hope you’ll be feeling better soon x

[Hidden in reply to Joy123]

Unfortunately, literally the only oral drug with real efficacy against pseudomonas aeruginosa is cipro. Doxycycline has been proven to have some effect where there’s no resistance, but that’s the only other oral that does anything at all on its own, and resistance is extremely commonplace. Although there have been studies that show using it in combination with other antibiotics may potentially be useful for pseudo, trying to use septrin alone is no better than giving you smarties: pseudo has been proven to be inherently resistant to it, and it boggles my brain that there are any trained medical consultants out there suggesting otherwise. It clearly states in all the literature that septrin doesn’t work against PA, and I’m actually really concerned about the care you’re receiving on your behalf. Do you mind me asking what IVs they gave you over Christmas?

[Joy123 in reply to Hidden]

Sorry, for late reply not doing too well at present. You asked re my IV antibiotics. I had meropenem for 14 days and Ceftazidime for 7. 21 days in all of IV antibiotics. Joy. x

[Alberta56 in reply to Joy123]

Sorry to read that you ill. I hope you'll find something that works soon. xxx

[Joy123 in reply to Alberta56]

Thank you, still struggling at present. Joy x.

[Alberta56 in reply to Joy123]

Sorry to read that. These pseudomonas bugs sound the worst of the lot.

[Shrimpy-13-22-25]

Hi Mooka, I certainly agree about Charlie and he’s so knowledgeable, I’ve tried to keep abreast of lung medication but have found that I’m totally ignorant since going onto the forum and meeting people like Charlie who are so willing to pass on their knowledge. With recent occurrences it has now become obvious that I need specialist care so will try to find appropriate consultant.Hope you keep as well as you can, and please to hear you have a good team around you. Best Wishes

[AndrewT]

Dear Shrimpy=13=22=25,

I know little about your Condition but, might I suggest, that you perhaps DIDN'T see your Doctor in 20171😀😀😀. Sorry but the times I'VE Done this!

Thank you gor the, no doubt unintended, Laugh Shrimpy..... it's quite Made My Day. Seriously though I wish you well, my friend.

AndrewT

[Shrimpy-13-22-25 in reply to AndrewT]

I blame my arthritis! 😂

[wheezybronch]

cysticfibrosis.online/pseud...

I have bronchiectasis/tracheobronchomalacia, and am colonised with pseudomonas, I have had many two week courses of combination antibiotics. I have had all of the following; (taken from the link at top)

Aminoglycoside (tobramycin) is combined with a beta lactam (aztreonam, ceftazidime, meropenem or piperacillin-tazobactam). We try to keep colistin as a second line agent e.g. if there are concerns about allergy or bacterial aminoglycoside resistance (Conway et al, 1997). The individual patient’s history of antibiotic hypersensitivity reactions is taken into account when deciding treatment. I take nebulized Gentamicin twice a day, I was on Colistin for several years, (amongst other drugs). I also take oral Azithromycin 250 mg three days a week. I have an emergency pack of Co-Amoxiclav and prednisolone. When in hospital extensive physio was needed and I used a vest combined with postural drainage as well. To help in chest clearance I keep well hydrated and take two Carbocysteine three times a day. With my Gemtamicin, I neb Salbutamol, 6% saline and Ipratropium. The saline causes osmosis, (attracts water into the lungs to thin mucus. It is virtually impossible to get rid of pseudomonas entirely and flare ups will almost inevitably occur. I cannot take Ciprofloxacin either, due to damage to my tendons. You can have pic line inserted under your left arm, that worked for me, as my veins collapse as well. You could also have a port fitted, centre of chest usually. I was an inpatient for ten days and got out on the 23rd December. They had real problems fitting my line, I usually have a long line but had to do with a much shorter one, the line was for Aminophyline which is a very good vascular dilator, I did not have antibiotics on this occasion, I had a right middle lobe atelectasis and compacted lungs. Luckily the treatments and physio re-inflated the lobe and much of the muck. I wish you luck in the future, any more questions, I will try to help.

[Shrimpy-13-22-25 in reply to wheezybronch]

By golly wheezybronch you’ve certainly been through it! I’m glad that got out in time for Christmas. I hope you’re feeling ok now. I see you had a vest fitted, have you been given one for home use due to your tracheobronchiomalacia? I also have EDAC and asthma and even though I do various lung exercises, chest tapping, circle breath, flutter, yoga breathing, I’m still getting pseudomonas about every 6 weeks and wondered if a vest may be beneficial and help clear the stubborn mucus. I take 6 carbocisteine daily. I’m always concerned when I’m I’ll and cough a lot because of my trachea collapsing over 70% every time I do so, which may weaken it. Oh well, back to shopping for groceries online! Best wishes,

[wheezybronch]

I have just seen an answer to you which mentions cannulas, if that is what you have been given, then you are not at a "Proper" hospital, a cannula should always be removed after 72 hours, the "norm" is a long line, which hospital do you attend?

[wheezybronch]

royalpapworth.nhs.uk/our-se...

rbht.nhs.uk/our-services/

leicestershospitals.nhs.uk/...

[wheezybronch]

Someone has stated that you cannot be separately diagnosed with COPD, Bronchiectasis and CF, this is not correct, whilst pretty much all CF people do develop bronchiectasis, COPD is a separate medical problem entirely. I have noticed that I did not answer your question about the vest, it was a Hill Rom vest and I was allowed to use it in Papworth, I am trying to obtain a mobile vest but cannot afford it.

[Hidden in reply to wheezybronch]

It was me that said that, and I stand by what I said: my understanding is you can’t be diagnosed with all three in combination due to the overlap. NCFB and CFB are frequently indistinguishable with current testing, hence why patients with ncfb are now routinely screened for cftr mutations to ensure the appropriate treatment pathways are applied. Similarly, just as the symptoms are, elements of cf would also be indistinguishable from elements of copd, with lung damage in cf often beginning in the peripheral airways as small airway disease akin to what’s seen in both asthma and COPD.

There are numerous papers that talk about the similarities in clinical disease symptoms, pathology, and imaging between ncfb and cf, and copd and cf, and we know that they’re all inflammatory mediated conditions. The primary differences are cause, with cf being the only one currently with identifiable congenital genetics, the presence in cf of specific systemic disease outside of the lungs, and clinical outlook. Could someone have both COPD and cf? Theoretically, yes, but my understanding is that the crossover of symptoms and pathology is so wide it would be impossible to attribute specific symptoms or clinical findings to one or the other: in 2015 they confirmed that emphysema is also part of the clinical disease spectrum found in cf lungs. But none of that is surprising when you consider that ncfb and all of the most common obstructive diseases - including asthma and all variants of copd - are now believed to potentially arise from a spectrum of cftr dysfunction with cf at the most severe point on the scale. This is why the cftr modulators that have been developed for cf in the last decade, such as ivacaftor and lumacaftor, are now being studied in relation to these other conditions. If the underlying biology is ultimately rooted in the same (or very similar) cell processes being faulty, albeit as a result of different triggers, then treatments that work at that cellular level may also prove beneficial to those with ncfb and copd.

Regardless of any of the above, though, in practice, if you’re diagnosed with cf, (and with the exception of PCD which can be diagnosed separately due to the presence of ciliary dysfunction), cf is the only obstructive respiratory diagnosis you’ll be given. To date, with the exception of a late cf diagnosis where someone might have been wrongly diagnosed with one of the others initially, there is no one diagnosed as having cf in addition to any of asthma, copd, or ncfb, because they are all share presenting disease features of cf itself. Which is why I challenged the reply the way I did.

[Morrison10]

Hi, I’ve just looked through your posts, sorry have such problems. One of the antibiotics I take is Septrin Forte, that’s the trade name, easier to remember. Know it’s been used for long time, but gives some people problems, but helps with my pseudomonas etc. I was born with PCD, Kartegeners.

[Hidden in reply to Morrison10]

Unfortunately, septrin is not effective against pseudomonas due to the bacteria being inherently resistant. It’s listed as such in the table under section 5.1 of this link to the UK database of licensed medicines: medicines.org.uk/emc/produc...

The only effective oral option available for pseudo remains ciprofloxacin, with doxycycline also having some slight antipseudomonal action, making it occasionally useful for people with a cipro resistant strain.

[Morrison10 in reply to Hidden]

Thanks, that’s interesting, I also had other infections this year, stenotromonas Maltophilia, have also taken Ciproxin 750 and Azithromycin. Glad to say at moment much better, my respiratory physio is very pleased how easily she clears my lungs. My consultant wants me to have course of iv, have had six previously, didn’t work, but taking two antibiotics simultaneously did!

[Hidden in reply to Morrison10]

Ah, so, septrin is the main antibiotic effective against steno - the child has had ongoing issues with it on and off for the last few years. We keep some in the cupboard as a result, although her primary issue is cipro resistant pseudo, and then fungus. Zith is used more for the anti-inflammatory effect it has than the antibiotic one, hence why it’s taken 3 times a week rather than every day, but is great for those it works for.

[Morrison10 in reply to Hidden]

Hi, I’m impressed with your knowledge, sorry your child is so poorly. Would be good if new antibiotics etc became available but was told years ago as unlikely, too difficult and expensive to develop. Thanks for your interest, hope things go well.

[Warrior4104]

heya, new fellow here. Got my first iv ceftazidime course completed of seven days today. My doc prescribed ciproxin 750 along with it for two weeks. But i dont seem to tolerate it due to its worse side effects. Any tips would be appreciated. Well, my phlegm became transparent. Does this mean pseudomonas cleared?