I knew that one day the oral antibiotics would stop working on my pseudomonas and I would have to go into hospital for iv antibiotics. I got a phone call from the hospital consultant today to say I have to go in on Wednesday for the iv treatment as my sputum sample showed it was colonised and that ciprofloxacin didn’t work anymore. I have to go in for 7-10 days, which I am not looking forward to, I have been so well for the longest time this year and have been able to do so much which hasn’t happened for about 7 years. I started to feel unwell yesterday whilst we were away at the weekend, all my family and I went to a surprise 60th party.
I am grateful for a bit of time out from being unwell and I know I’m going to be so bored in there so if possible I will read and do crosswords. The doctor said this is it now whenever I have a flare up straight in hospital. He said I will have to take carbocisteine to help loosen up the mucus and maybe when I come out of hospital take Azithromycin. My question is is this normal treatment for Bronchiectasis with pseudomonas? Maybe it is a how long is a bit of string question but I like to be prepared. I would be grateful for any answers any of you can give 😊 xx
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Patsy164
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Hi Patsy164 and welcome. I am one of the lifelong bronchs (65years) on this forum. Yes, IV abs are part of the treatment for bronch although most bronch experts give 14 days to give a good clear out. Unfortunately pseudomonus stays lurking in there even when the hosputal labs can’t pick them up. The object is to keep the numbers low enough to allow us to lead normal lives. I have been colonised with pseudo since 1986 and have only had to have IV twice.
We are all different. Some of us nebulise abs to keep the numbers down. I took 2 weeks cipro in Oct because although the labs have been showing that it does not work in the petrie dish it actually works in my body. Other people find that they have to have IV quite often.
Fortunately, it is becoming more common for patients to be able to do their IV at home. It depends on the services at your hospital. Azithromycin is a good ab but it is not very effective against pseudomonas so ask your consultant about nebulising a pseudomonas specific ab instead.
It will be up to you and your consultant to find the best way through for you.
Good luck for your treatment and I hope that you are very much better soon and enjoy a lovely Christmas.
Thank you so much Littlepom. I must say I was surprised that ciprofloxacin didn’t work anymore I have only had it twice. That sounds quite positive that you have only had to have IV antibiotics twice in all those years.
I was diagnosed in 2017 and I am monitored on a 6 months basis so have no idea how long it’s been lurking and growing in numbers since July. I only started to feel unwell Sunday.
You seem to be following the pattern for bronch. Exacerbations usually make themselves known after a virus. Sometimes there is no explanation. I think the fact that your immune system is fighting the virus gives the bacteria a chance to have a party.
My con is one of the top experts in the UK and she always says try 7 days of cipro before resorting to IV. If it has begun to work carry on with it. If not have IV. Unfortunately too many medics rely on what the lab says but the petrie dish and the body are too different things. I know that she has had to educate several respiratory cons about this. I feel that IV is being given too much and too soon in some people. The most important thing is rigorous self management and getting rid of the mucus that the bugs like to breed in. I would discuss it with your con. Check that your con is a bronch specialist, not just a general respiratory consultant. Bronch is very complex to treat and most general respiratory cons don't have the training or experience in it. If they aren't a bronch specialist, look for one on the internet and insist that you change. We bronchs have to be very proactive in our own interests.
Wishing you all the best, I hope it goes ok and you manage to find plenty of things to do to keep the boredom at bay. Maybe you'll be able to find out about the IVs at home that several people here can do. Best wishes to you 🤞
Thank you HungryHufflepuff it’s the boredom I am not looking forward to. My daughter-in-law is a nurse at St Thomas in London and she was surprised I had to go in, she said normally you go in twice a day to have the IV but it doesn’t sound like my area does this. Maybe in the future I hope. Hoping you have a good Christmas 🎄 xx
There is something unique about Hospital Boredom. I hope you can find something to keep your mind occupied. I find it hard to focus when I’m in the hospital and for me things with short articles are the best, or sudoku. We can all keep you company too. 😊
Hi Hun, Just to say my Very Best Wishes to you, and that you will learn so much with the IV, then advise on this Forum. Littlepom has already advised, as I Knew she would Help. Good Girl LP. Love n Hugs for you Patsy. XXX C.
Thank you for your lovely words, it is probably a good thing I am going in, I like my Mum, look well when we are ill, I think that and my cheerful disposition doesn’t help either. Littlepom is so knowledgeable it’s great to have that experience on this and the Bronchiectasis site. I am now armed with questions. Love and hugs back xxx
So sorry to hear you have to go into hospital, we will all be thinking about you and wishing you well and a speedy recovery. If you get to bored I'm always here for a chat. Have a lovely day and take care of yourself 😊 Bernadette xx
Thanks Bernadette the doctor told me on my last visit if I was ill again this year I had to go in but I had no idea that the pseudomonas had colonised because all that I noticed was I was not really interested in food and only Sunday I started to feel unwell.
So sorry to hear you are going into 5* for your IVs and generally I would have thought 7 days was not long enough for BE.
It’s a shame your strain of pseudo is not sensitive to Cipro. I am in a similar position as I cannot tolerate Cipro, nor can I tolerate nebulised macrolides, so IVs appear to be my only option and I am on my 4th this year. We are all different and if we have a bronch specialist, then they are the ones and yourself who will know what is best for you.
Just wondering if they have considered nebulised antibiotics would be of benefit to you and/or do you nebulise saline either isotonic or hypertonic.
I have just spent a few days in 5* to try a (new to me) IV antibiotic because of my numerous intolerances and it was so boring I was looking at the clock for meal times, which I knew I couldn’t eat anyway! As soon as I got my midline fitted I went home and carried on self administering my IVs. I will be going for my end IV check later this week. Home IVs have pluses and minuses. We bronchs have to cart all our drugs, needles, sharps bin etc. A sideboard full of stuff. It is hard to do them when you feel very poorly at the beginning and you have everything else to do in the house, not spring cleaning, just everyday stuff. The benefits are you are in your own home/bed, independant, can do them to time in your jamas and the experts are only a phone call away.
I hope your stay goes to plan and you feel much better after your IV course. I also hope you and they will have a plan in place for prophyactic treatment to keep down the pseudo numbers.
Forgot to ask, do you know what ab you will be having. For some it would be administered 3 times a day.
Here’s a link. Not sure if you have seen it but I had the pleasure to be involved as one of the patient group for 18 months. I hope you and others with BE find it helpful.
Thanks cofdrop and thanks for the link which I followed and found helpful. The consultant didn’t say which ab he was going to use on me. I will find out tomorrow and I can let you know.
I have never been given or told to use a nebuliser but I agree I think it can help as I have had trouble bringing mucus up for about 3 months hence the stay in hospital.
I read your post about you going in hospital and having iv and having different ab but at least you are out now and can do the iv at home.
This is my first time on an iv with Bronchiectasis, I did have it when I was ill on a cruise ship and got pneumonia I had the iv twice or three times a day also with ab tablets too. Was so ill and was confined to my cabin for a week. So I know the drill so to speak.
Thanks for your help and advice much appreciated 😊 xx
It was only had 4 good days was such a shame being confined to the cabin but it was a 5* stay, meals were delivered daily and the room was cleaned twice a day. Was too ill really enjoy anything but did the cruise again a couple of years later and thoroughly enjoyed it . Xx
I had a picc line fitted and just went in morning and night for my iv antibiotics as I live local to the hospital ,done this after a weeks stay but was allowed home daily ,hope you get sorted soon xx
When cipro stopped working for me I had 2 weeks iv antibiotics, administered at home, and I felt better than I had for months so you can look forward to feeling great when you’ve had them! I have nebulised antibiotics since and take Azithromycin and co trixamole 3 times a week. So far has kept the pseudomonas at bay but let in a few other bugs. I hope you feel better soon x
Thanks for the info. I will be glad when it’s all over to be honest but will look forward to feeling better. Just about to head off for the hospital now x
I too have bronchietasis & psuedomonas colonised.I have had R.lung .segmentectomy in 2012 due to mycobacteria causing cavity. Pseudomonas is hospital acquired. I have had lots of intravenous drugs.
Gentamicin was effective. I get home intravenous treatment hospital services which is not too often.
Ciproflxacin didn't work for me. Ask where it has colonised. Look at your X-rays. Oral antibiotics can cause more problems if over used. ie..gastric.
I have nebuliser drugs Accapella device for clearance.
Inhalers. Im sure you do also. My psuedomonas is contained well. You make sure you have access to your info on lung condition and treatments and keep all your hospital discharge papers . X
Hi Helroo I am out of hospital after 10 days Cefraprazole. My discharge notes said pseudomonas pneumonia. I have been given azithromycilin and carbocistine to take from now on. I have inhalers but not nebuliser drugs. What nebuliser drugs do you take?
I’m not sure if the treatment has worked because the antibiotics dried me up. Won’t find out until February when my next appointment is.
Thanks for your advice and I hope you are in good health at the moment x
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