Bronchiectasis and Infections - Lung Conditions C...

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Bronchiectasis and Infections

Annie04 profile image
29 Replies

Hello, advice please on staph infections, I’ve had IVs twice and many oral meds last IV ended 6 weeks ago and now I have pseudomonas. On Ciprofloxacin had one week with one more to go.

Pleurisy is now back. I’m on inhaled Colomycin and it’s never ending and I’m so fed up! I’m asthmatic as well so inhale on a nebuliser for this.

Staph seems to be fairly colonised as does pseudomonas.

So any advice or cheery word is welcome xx

29 Replies
Annie04 profile image
Annie04

**Sorry forgot to add this is since the of February.

Delamere profile image
Delamere

Hi Annie 04. I also have colonised pseudomonas. It is a real pain in the ass !! My physio became my best friend helping me to understand the trauma my lungs had gone through after last lot of lVin January. If you don't have physio ask to be referred they have so much practical aadvice.You will get there but only slowly day at a time.Wishing you luck xx

Annie04 profile image
Annie04 in reply to Delamere

Thank you for replying I have a good physio that’s going to trial me on Thursday with upping the game. May I recommend asking for help in keeping pseudomonas at bay as this new drug makes me feel much better. Cipro seems to be working but I detest the side affects, sickness in particular. X

Izb1 profile image
Izb1

Cant advice you Annie, but sending love and hugs x

Annie04 profile image
Annie04 in reply to Izb1

That’s needed as much xx

Gardeningdays profile image
Gardeningdays

I have had a similar experience also since February first a Staf A infection which resolved with floxacillin then 2 weeks later sputum sample showed Pseudomonas which resulted in IV antibiotics and ciprofloxacin. It did not clear so 6 weeks later admitted fir more IV now on colomycin in nebuliser. Will find out Dow it’s going next month. Definitely physio helps to clear the lungs. I am still learning about this myself but really empathise, it’s a long time to be unwell, I seem better now I’m on the nebuliser and the last IV antibiotics Meraperen I believe certainly really made a huge difference.

Annie04 profile image
Annie04 in reply to Gardeningdays

Yes, I feel your pain as staph is a regular occurrence, had Pipercillin one week then Meropenam for two weeks on IVs then three weeks later pseudomonas arrived. I was worried as I’m already inhaling Colomycin twice daily but Ciprofloxacin has nailed it even after a week which had never happened before.

I have another appointment on Thursday so I’m sure it can be sorted. Keep well!!

Gardeningdays profile image
Gardeningdays in reply to Annie04

It does seem to be a matter of finding the combination or particular antibiotic that fork for the specific infection. I am just hoping the Colomycin is holding it all at bay. It’s been an unpleasant year so far. I’m also Asthmatic and have bronchiectasis, it follows on from lung issues when I was younger.

Annie04 profile image
Annie04 in reply to Gardeningdays

Mine was long term inadequate asthma care cultivating in a aspergillious infection that resulted in a hospital stay. It’s still popping it’s head up.

Gardeningdays profile image
Gardeningdays in reply to Annie04

That’s interesting mine is also the result of an undiagnosed aspergillosis infection that was identified finally at 28 years old and resulted in 5 years at the chest clinic. I’m 64 now and bronchiectasis was identified in 2019 the Staf A and Pseudomonas this year when they started doing sputum samples.

Annie04 profile image
Annie04 in reply to Gardeningdays

That’s a coincidence! When admitted my iEg was over 5000 I had infiltrates and was very ill at the time and had pseudomonas this was in 2019. CT scan showed I had no IGG measurement at the time and ‘overall chronic allergic pulmonary Aspergillius’. Under my asthma consultant I’ve been having many tests and hopefully leading up to biologics. I’m atopic and seem to be allergic to many triggers. Including Aspergillius but now I have both iEg and iGG on this with rast testing. When I asked I was told I had the allergy, but not ABPA as it’s not in my lungs. However, now, every sample is scrutinised. I must admit I’m quite nervous ever since as it seems to enhance the asthma and it was awful before. I’ve basically been placed on predisilone for the past two years with a maintenance dose of 5mg this last few months. All of this and the bronchiectasis on top is quite challenging.

Incidentally, I’ve not been able to complete my Ciprofloxacin (pseudomomas) as it’s made my calf muscles agony. So, my last two days I’ve had to stop.

Gardeningdays profile image
Gardeningdays in reply to Annie04

Hi Annie I had a similar experience many years ago at the moment the ABPA is not a problem and there is no Aspergillius showing in sputum samples so that is all fine. I had the problem when I was 28 and it caused a lot of issues with my left lung in particular. I now have centralised bronchiectasis on that lung. It is the Pseudomonas that is the current issue so I’m hoping the Colomycin will resolve that, I’m ok with nebuliser so hopefully it will keep it without exacerbations and I will be happy with that. Hope they get it all sorted for you, that is a lot to deal with at the same time Ros

Annie04 profile image
Annie04

Thanks for your replies it’s good to know others in the same boat as they say, plus ideas on treatment.

Can I ask if anyone has tried 7.0% saline on lung clearance? I’ve a trial coming up. Normally use 0.7% so physio is upping the game.

Keep well and in good spirits as best as possible 🌺

Souhada profile image
Souhada in reply to Annie04

My bronchiectasis Dr has prescribed 7% sodium chloride nebulizer solution 2x daily and it has done wonders for me. She also said that most bugs do not like to colonize a salty environment.

Annie04 profile image
Annie04 in reply to Souhada

Is it sad to say I’m excited to try this…infact anything that makes it all bearable.So glad it’s working for you!

Tinker26 profile image
Tinker26 in reply to Annie04

I use inhaled saline and it's been a lifesaver ,clears my chest in no time .

Patk1 profile image
Patk1 in reply to Annie04

Ive use 7% hypertronic saline in nebuliser.it does help loosen mucous

Flobber profile image
Flobber

Well Annie, what the heck is wrong with this summer? I can't really help for staph. Like you I have the pseudomonas now from bronchiectasis, and I am on the ciprofloxaxin now. I can only commiserate with your misery. I had pseudomonas once before in 2013 and spent11 days in hospital being flushed through with an antibiotic that actually worked, Tazobactam I think and maybe piperacillin. Cipro was hopeless. Eight years later, cautiously, it seems to be working. I have no faith in it to do so though. Being exhausted and your own advocate with a GP practice rapidly descending down the toilet is really no fun at all. I had to fight for even five days worth, which took a week to get and now for an extra nine days worth which may not even work. They don't even know the NICE guidelines. All I can say is that with as much strength as you can muster just persist and be a nuisance. A&E if necessary. The past three weeks have been hell really and I don't really feel any better knowing that you are suffering too. So far two doctors and one "nurse practitioner" (as if we're the worried well who need pacifying) have failed to give either bronchiectasis or pseudomonas any thought or consideration. So I can't tell you anything positive I'm afraid. I have a procedure coming up for heart failure on 3rd September and have anxiety over that actually going ahead. And I've survived covid and sepsis previously so I don't want any balls ups on this, especially from sick anti vaxers clogging up the system with the "Indian" oh sorry, Delta variant. Also like you I have asthma and heaven knows what else. It's a drag getting old. Hold on to a sense of humour and keep on going. If you've actually seen a doctor in person you're lucky. I haven't seen one in two years except for hospitals. Anyway ciprofloxaxin seems to be working. It's the next drug up the ladder for me after coamoxiclav whether a test says so or not. Try telling the medics that. I spent a weekend suffocating because the nurse was afraid to prescribe it. Love to you. Stay strong and choose your battles. Welcome to your new NHS. It's not my religion. 👍

Annie04 profile image
Annie04 in reply to Flobber

Oh my, that’s a journey and a half, I feel for you. Yep, pseudomonas and staph infections are my staple ones, hence why the saline challenge. I’ve also not been so fortunate to respond to coamoxiclav, although its my rescue pack. I’ve only managed to see my GP once in two years and had been told my pain was a cracked rib (I had pleurisy) hence being placed back on IVs when I finish I feel great then it’s a slow decline. The inhaled Colomycin for pseudomonas is a game changer, twice a day and feel almost human. I’m now in shared care with a respiratory consultant in a hospital and the GP. Thank you for your advice it’s appreciated and wishing you healing vibes 💐

Foxy79 profile image
Foxy79

Hello Annie I'm foxy79 I have pseudomnas and been on colymcin and gentamicine as well trust me I feel you and I'm fed up with it as well. Firstly how much ciprofloxacin you on I'm on 750mg 2 x a day and on 50ml perdiesoline and co- amoxcille 6.25mg co-tromzille 960ml 2 a day with amphailline 225ml 2 x a day plus nebulizer ventlio2.5mg ipratropium 2.5mg muclear 3% and 7% I'm on oxygen and N.I.V you Need to control your pseudomnas by keeping your infection and oxygen level in a balance and mainly they are connected to your weight do your rescue pack by 14 day's or as long as it takes then wein of your streiods and then do bit gym or workout and you will lose weight definitely best exercise is walk and treadmill and what you eat maintain your food diet let me know if I can be bit more help with advice Annie good luck take care

Annie04 profile image
Annie04 in reply to Foxy79

Thank you so much for your advice. It’s lovely to hear how others are coping and I had thought of a treadmill as well. I have complex asthma as well as all of this so my pred is always up and down. Infections make this flare up to an awful extent and I go around in a circle. In the space of two years I have had IV’s about every three months when it’s been overwhelming and it’s been a minefield of infections. I’ve been on the path of possible

Biologicals for asthma, but recently had discrepancies on a CPET so now being sent for a echocardiogram, fingers crossed it’s ok. Thanks again 💐

Foxy79 profile image
Foxy79

It's needs a start for you bit of balance and weight loss and your all good just a start if you get a tred bike or tred mill atleast will help you even a walk everyday for 20min a few weeks and give you a result. Good luck

Sufferer197104 profile image
Sufferer197104 in reply to Foxy79

hi there. I am 18 and diagnosed with bronchiectasis and pseudomonas colonization. For the first time in my life i got iv antibiotics: ceftazidime and cipro 750 twice a day. Cipro is being a deadly poison for me as i dont seem to tolerate it but iv do the great work. My green sputum is now changes to white. Is the infection cleared. Plus it would be helpful if you give me some tips on how to handle as i am a newbie Thanks

Foxy79 profile image
Foxy79 in reply to Sufferer197104

how I'm foxy did you say your 18 it's very bad to hear at that age you have that but I hope you feel bit better and I can say bit of exercises is good if you can tolerate it as it for your infection if the sputum is clear know I think it should be finished the infection cause ciprofloxacin 750mg X 2 is a lot specially with IV of antibiotics for 10-14 days hope you feel better

Sufferer197104 profile image
Sufferer197104 in reply to Foxy79

Thanks for your kind words. It is really frustrating to have it at this age but I am glad my doc caught it earlier than it lingering around for much years my symptoms would have worsen. I have got my both lower lobes affected. What sort of exercises do you recommend?

Foxy79 profile image
Foxy79 in reply to Sufferer197104

hi sufferer can I ask whats your name and what country you are in please if it's OK to ask. I'm in UK and my name is foxy Ahmed I'm suffering from serve copd broncechtisis emphysema respiratory type 2 odimia and pseudomnas as I said. pseudomnas is the worst as every time I had it ciprofloxacin worked otherwise I'V when it's to late. You know there's other antibiotics via nublizer you can ask your consultant you can ask to take via nublizer like Gentamicine Collamicine etc it's very easy and safes pain and suffering with going in hospital. Regarding exercise I do 40 min of treadmill and 30min of free weights and that could be from light to heavy as its suits you even if you can walk on treadmill for 20min to 30min or whatever you can everyday in few days you see your tolerance will improve and depending on your weight I can say your daily balance of food but it's recommended best to eat some fruits and vegetables and salad everyday including tuna. Hope it helps take care.

Charlie_G profile image
Charlie_G in reply to Sufferer197104

Welcome to the group. I noticed you’ve replied to a couple of quite old posts: it might be a good idea to start your own post to introduce yourself and ask any questions you have. We’re a friendly and knowledgeable bunch, and we’ve got quite a few people with bronchiectasis that are members here, including some people that have had it more or less since birth. Pseudomonas can be cleared, but generally only if you catch it early on and treat it aggressively. For a lot of people (including my daughter) it’s a case of managing the infection long term using inhaled antibiotics day to day, and oral and/or iv antibiotics when the infection flares. Sputum colour and volume are the main ways to know if you’ve got an infection, and a sample should be sent for culture whenever these (or other respiratory symptoms) change. You need the right antibiotics to do the job. Unfortunately, the only properly effective oral antibiotic for pseudo is cipro, though. If you’re based in the UK, you want to make sure that you’re under a respiratory specialist to manage your care, but also one that knows what they’re talking about when it comes to bronchiectasis. General respiratory consultants often don’t.

Sufferer197104 profile image
Sufferer197104 in reply to Charlie_G

thankyou for your advise. Im not in the UK but seeing a pulmonologist. My doc ordered a sputum culture through which i got to know I have pseudomonas colonization with pus cells in it and he advised me ceftazidime iv with ciprofloxacin. Cipro has been making me sick to death, as if i have eaten a poison making me dizzy, anxious and what not. Ive stopped taking cipro but the sputum is now cleared for which I thought that the infection might be cleared and i might not take cipro for the next week😭

Lapis5 profile image
Lapis5

Just finished 2 weeks of Iv Cefdatine in Pik iv to no avail for colonized Pseudomonas and now culture shows i still have it plus Stenotrophomona Maltophilia. Took 750 Cipro 2x day for several mos to no avail also. Tommorrow i finally see an Infectious Disease dr at UCD and he will call my UCD Pulmonologist afterwards and. they will figure out what next to do. Very discouraged as this is the 4th Piik line iv i have had in less than 7 mos and now i want a Port as I am so tired of wrapping my arm for a shower. I do 3.5 saline nebulized twice a day while using an AFLO battery oscillating vest which helps greatly.

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