I have copd and also only 1 lung , one removed due to cancer.
I have been under the respiratory nurses for quite a while , then about a year ago they discharged me as they had done and given me everything they could. They did say to phone them again if needed.
My query is over a year ago the nurse said if it got a lot worse with my breathing Azithromycin may help.
Approx. 6 months ago I went to the GP as I needed a rescue pack. Steroids and Amoxcillin.
She said I had ,had too many episodes requiring antibiotics . I suggested the Azithromycin but she said she would have to consult the other doctors at a m.d.t. meeting. She came back and said I hadnt had enough exacerbations so until I had had at least 4 more I couldnt have the tablets.
So I ended up with nothing.
Yesterday I was back at the doctors ,but could only see the nurse, she agreed that over a year I had had 15 lots of Amoxcillin and it was too many. So now I have to wait for the respiratory team to contact me. One of them said I need at least another 2 chest infections before they could prescribe.
My Question is Those of you who are taking Azithromycin did you have to account for how many times you had exacerbations and did you have to give sputum samples each time , before they gave you them.
Thank you. 😊x
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jillygirl
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Hi jillygirl, I’m trying really hard to remain calm but am really angry after reading your post. You need to see someone who knows what they’re talking about. Azithromycin is a good antibiotic for most and helps to prevent exacerbations. Surely it’s what you need?
I hope you can get the help and support you need. Do let us know how you get on. Xxx❤️
You have now got a whole army behind you all spitting nails and on the warpath. I had 4 years of suffering before I was prescribed Azithromycin and this was only because I changed hospitals and got a bronchiectasis specialist. Good luck and let us know the results please. 🧑🎨💂♂️🧑🎨👩🏿🦯🥷🧌👨❤️👨💣⚔️
I'm so angry too. Do agree with sassy. Don't know that much about that treatment. I have stage 4 emphysema and bronchitis but no where as poorly as you. Bless you you shouldn't be fighting like this to breath. Listen to sassy and let us know❤️
I can't believe what I am reading! You have ongoing lung issues due to surgery and cancer and yet you are being treated as a normally well person with simple chest infections. Even for them the four infection rule is total nonsense, invented by some lazy person at your surgery. The first infection should have been treated properly which it wasn't.For a start, amoxyll is as useless as smarties for situations like yours. You need a far more complex antibiotic to deal with your infections. You should be under an expert respiratory consultant, preferably one who also specialises in bronchiectasis. Sending you home with one lung which is not coping is verging on the criminal. They are deeply in breach of their duty of care towards you. Whilst you are not being treated properly your remaining lung will become more damaged with every infection that is not treated properly. For your own sake, find a good specialist on the website of your nearest large teaching hospital. Take the name to the GP and INSIST on a referral.
Preferably change your GP surgery to one where somebody knows what they are talking about. And when you can face it- raise a complaint against this lot.
We have to be very proactive in our own interests and vociferous in getting the right treatment.
Thanks for the reply I am going to get in touch with my consultant who was involved with the lung surgery. Its almost 12 years since my lung was removed, but I have coped up to the last 6 years and then the copd got worse. I have only just changed my doctors surgery but I think they are waiting to hear from the respiratory nurse before they do anything. Thank you for your response you are quite right its not good enough. 😊 Funny enough I have just broken off this reply as I have had the nurse on the phone who is coming to see me next week and try and sort things out. Will let you know how I get on. 😊
Azithromycin as well as being anantibiotic,has anti inflammatory effects in the lungs.u deserve this.every infection causes more damage+ with only one lung,u need it.re infections,try put specimen in.i find doxycycline tends to work for me at 1 twice a day for a minimum of 2 wks
I’m joining the back-up team here wondering what on earth your GP Practice is up to? I was horrified to read your post - you’ve been given lots of good advice already - please feel confident to seek more help for your particular issues.
I cannot add anything more to the excellent posts you have received. But I am another that takes Azithromycin. There are quite a few of us that do on this site. Some just over Winter others all year through. Some take three times a week, other five and so on. In a NHS where we are constantly reminded that the key to better health and quality of life is preventative treatment surely you would come under that category. Amoxicillin does not touch my infections either. I have Bronchiectasis. I am so sorry you are having to deal with this and hope you get some good treatment soon. Take care. xx
Totally out of order! I was prescribed by my consultant, but it's not an unusual treatment for we lungies. Also, like Dottie, I find Amoxicillian doesn't work for me. In fact I take 2 weeks worth of Doxycyclin (?) at a time, all with my doctor's blessing.
You have had great (as usual) advice from swizzy. INSIST!!
No the respiratory team gave me azythromycin based on the fact I had at best a chest infection every 3 months... ive only recently started submitting sputum samples
But it was the hospital that told my GP to prescribe it (my GP wouldn't do it off there own back)
It's not normally used by GP's and isn't something any of my local pharmacies keep "in stock" it has to be ordered in.... so I'm going to say it's doctors prescribing it on specialist/consultant instructions.
My consultant suggested Azithromycin when she diagnosed me with bronchiectasis. I said no thank you- I don't want to take an antibiotic every day. Then I got a really bad infection. One of the nurses from pulmonary rehab came out and, before I knew it I was on Azith, and equipped with a spacer and a rescue pack. I did not have to wait to get multiple infections. Very best of luck- you have been treated disgracefully.
Alberta56 mentioned rescue packs. Some of us have those too. I was very grateful to have mine ready at home over New Year. All these measures help to keep us out of hospital and reduce the NHS burden. Always two weeks worth.
I so agree with all the comments on here and feel just as mad as everybody else. What a stupid gp you must have to not take into account the damage being done to the one lung you have. Let us know what your consultant says, hopefully he will be just as mad as we are x
What!!! I was prescribed azithromycin by a consultant. It definitely wasn't based on the number of infections I'd had, nor did I have to give sputum sample. (I can't do them ) The whole reason for azithromycin as a prophylactic is to prevent infections/inflammation. Grrrr! We're all behind you!
Hi jillygirl for me Amoxicillin are useless ,my consultant put me on azithromycin three times a week ,if I were you I would ring consultant secretary ask for email address ,put everything down in writing,ask for tele phone apionment it's quicker that a face to face besides she will have read your your email goodluck, I have got through to my consultant this way
After many years with a LOT of exacerbations, my chest doctor put me on Azithromycin 3 times a week. It helps a bit,
I got a a big relief when I was put on IgG 45g/4 weeks and no more hospitalization. No more pneumonia but I am still on the Azithromycin witch was renew 3 days ago.
Hi, i gave in about 30 sputum samples before i got mine from being reffered as my doctor couldnt do much more for me took doxycycline and steroids so so many times but still suffered. When i was put on Azythromycin it helped me so much with infection in left lung. Now its gone and 4 years on im still good. Good luck hope it helps you. Karen Xxx
Your story certainly resonates with me as it took 12 hospitalisations and respiratory failure twice before they even gave me rescue packs. The specialist community nursing team are very good in my case and liaise with the consultants and GP on my behalf. I am currently on steroids and clarithromycin for the chest infection I have developed since hospital gave me COVID...I empathise with you and know how hard it is to be assertive and resilient when you're feeling so ill.
I sincerely hope that you get some positive intervention via the nurse this time. Take care
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Have I got the early stages of pneumonia or am I being paranoid?
