Opinions appreciated please

[Emerald52]

I had a phone consultation with my hospital consultant last week. Which I hate because I always get off the phone and think why didnt you ask this and that. She wants me to take low dose Doxycycline every day for the winter months (Im in Australia ) and has sent me a script in the mail. From reading many posts on this site I see that many take Azithromycin in that way as prophylactic and Doxy if they get an infection. Im quite nervous thinking about doing that. I have severe emphysema and do get quite a few infections. Just looking for some opinions on this. Thanks in advance to you lovely people. Hope everyone is as well as they can be .

[helenlw7]

I have taken Azithromycin for about 8 years, with only 1 chest infection while I was taking it. I also have rheumatoid arthritis and my consultant prescribed a different medication, which couldn’t be taken with Azithromycin. I was then put on Doxycycline every day. I took it for 3 months, had 3 chest infections in that time, followed by pneumonia, for which I was in hospital for 7 weeks. Needless to say, I’m back on Azithromycin.

[Emerald52 in reply to helenlw7]

Thanks Helen, Azithromycin is definitly sounding like the way to go Take care.

[Ern007]

Sinse COVID phone calls seem to be the norm. as well as other things I have not seen Thyroid consultant for years, sae with Cardio I don't even get a phone call, all through my GP - I find Doxy and Pred fine, although my GP prescribes these. I dare say y GP is in contact with the hospital, but nothing is like it was before COVID. I have nver taken Azithromycin as a prophylactic - and wonld not if offered - I can't reallly help but I see your point, but others who take Azithromycin like you know more. I wish you well.

[Emerald52 in reply to Ern007]

Thanks Ern007 Ive got some decisions to make here.

[Ern007 in reply to Emerald52]

It used to be easier than now Emerald52 - I hope you get your ABs sorted.

[Offcut]

I know what you mean now as I get older, I have a memory of a goldfish. If I know I am going to get a call I write down a bullet point list of what I want to ask or know more on and tick them off as we talk. Then after the call I think of something else I should of asked

[Emerald52 in reply to Offcut]

Thanks Offcut. I should have questioned that then. Might contact hospital and see if I can get a call back.

[rosco59]

Hi there, I have Bronchiectasis and now take Azithromycin three times weekly. I’ve had two chest infections this last winter but that’s all, since starting Azithromycin. When I had the chest infections I took Doxycycline to clear it and then went back to my normal routine. My life has been so much better since starting Azithromycin. I was having constant back to back infections before as I look after my young grandchildren several days a week and they are a magnet for bugs, as you can imagine. I wasn’t prepared to give up my time with them, so Azithromycin seemed to be the only way for me to try to get a better quality of life. It really works for me currently and I hope it continues to do so. I do understand what a difficult decision it is to start taking prophylactic antibiotics and everyone is different and has other issues to cope with. I wonder if you could discuss your concerns again with your consultant? It seems a bit much to just tell you over the phone that this is what’s going to happen, and expect you to accept it without a chance to have your concerns allayed. I hope this helps.

[Emerald52 in reply to rosco59]

Thanks rosco59, yes I think I will contact hospital and see if consultant can call me back to get into that in more depth.

[B0xermad]

Hi Emerald 52 I have emphysema(copd) bronchietasis and asthma and been on azithromycin for 7 years and it has decreased the infection rate to one a year for me so definitely helps

[Emerald52 in reply to B0xermad]

Thanks BOxermad, Azithromycin is sounding like the best way to go.

[B0xermad in reply to Emerald52]

If you can get on with it , it's a good thing as only 3 tablets a week

[LissacFrance]

Azithro is most often used for people with bronchiectasis. It acts not only as an antibio but also anti inflammatory. I hope this bit of info helps. Have a good day down under, Chris.

[Emerald52 in reply to LissacFrance]

Thanks Chris, every bit of info is a help. You have a good day too.

[LissacFrance in reply to Emerald52]

You`re welcome. Don`t hesitate to come back with other questions if you are not sure. There are plenty of folks on this group only too willing to help, offer advice or simply a kind word or two, and it does make a difference, Chris.

[Izb1]

The ent doctor put me on low dose Doxy for 6 weeks when all my sinus's were infected, it was the only thing that worked . I had been on a few different antibiotics but it didn't clear. I hope it works for you, if not ask if you can go on Azithromycin. If I have any problems I contact the consultants secretary . Good luck x

[Emerald52 in reply to Izb1]

Hi Izb1, I also have constant problem with sinus infections. Maybe I could try the Doxy for a few weeks then get switched over to Azithromycin. Ive not had either antibiotics before. If I get chest infection Ive normally been given Roxithromycin. Lots to think about. Thanks for that.

[Izb1 in reply to Emerald52]

Good that it works for you. I can't take any of the mycin antibiotics as i am allergic to them, but Doxy nearly always works for me x

[MoyB]

When I was getting lots of infections (I have Bronchiectasis and Chronic Asthma with fixed airways disease) my consultant considered prescribing Azithromycin but then declined as he said it could make my vertigo worse. As it was already very severe (I have Meniere's Disease) I agreed that I didn't want anything that would set it off even more. Also, I have PAF which can also be made worse by taking Azithromycin.

So, it was Doxycycline for me from November to April (I'm in the UK)! If I had an infection, I had to stop the Doxycycline and take Amoxycillin for two weeks.

The infections were still three or four a year.

Eventually, I had an ablation to settle the PAF and, thankfully, the Menier's vertigo went back into remission.

So I spoke to my consultant again. He discussed with the cardiologist and it was agreed I should take Azithromycin. At first it was just for the winter but when I reminded him that I am also prone to infections through the summer he agreed that I could continue to take it 3 times a week throughout the year.

What a game changer! I rarely get a chest infection now. I've still had COVID three times, but it didn't affect my chest, beyond the duration of the actual disease, and it was just like having a cold. I didn't need to take any other antibiotics. Last year, I had one infection that cleared quickly with Doxycycline which I had kept in the cupboard as it was still in date.

I really feel that taking Azithromycin instead of Doxycycline gave me my life back.

We're all different and it may not suit everyone, but the difference it CAN make is huge! I found it so much better than Doxycycline.

xx Moy

[Emerald52 in reply to MoyB]

Thanks MoyB, Will definitly be having another talk to consultant. Great info Im getting here from everyone.

[PaulineHM]

Hello,

Irritating isn’t it to have these phone consultations!

Have you requested a face to face ?

Ok, many people take antibiotics as prophylactics. I have been taking Azithromycin for 9 years with mixed results. Some people take Doxy.

Were you given advice re. continuing to take them even when you need to take other antibiotics for an exacerbation ? I wasn’t and now after 9 years I need to stop the Azithromycin while I take other antibiotics. Your surgery clinical pharmacist should be able to give you the answer to that one.

Go well.

Pauline

[Emerald52 in reply to PaulineHM]

Hi Pauline, I have had face to face consults with her before but this time she wanted to do a phone one and said she would see me after the winter. She didnt say about going on a different antibiotic if I got an infection. I can see i will definitly need her to clear up these points. Thanks for that

[PaulineHM in reply to Emerald52]

Good idea to get more information and by the way do you have a Rescue treatment plan?

This last winter I was so unwell for most of it and the rescue meds became a real muddle! I intend to ask the consultant for a rescue treatment/ meds on when I see him next!

Let us know how you get on won’t you ?

Go well,

Pauline

[Emerald52 in reply to PaulineHM]

I do have a Rescue treatment plan Pauline. Which is Roxithromycin and Pred. Its still so frustrating trying to get apt. with gp to get lungs listened to. Hope youre well now.

[kev60]

Hi, it is so frustrating in the UK they seem to rattle off the advice or results and when you come off you forget what was said, it maybe me but they seem to be getting quicker like they want you off the phone. I once had the gp phone and they only let it ring once and then put in my notes patient not available when I checked my phone they had been on for less than 5 seconds, put in a complaint got a call five minutes later.it’s definitely a good idea to write down what you want to know. I use a large pad and try to write the answers down and then write to the doctors receptionist (hospital). Kevin

[Emerald52 in reply to kev60]

Thanks for ideas Kev60 Im so grateful for all the helpful ideas given by all the lovely people on this site. Take care

[Patk1]

I usually make a note for phone call appointments for that reason,& it works well. In uk,azithromycin is the favoured prophylactic altho I was once on monthly rotation of three antibiotics ( doxy was one of those).doxycycline also has anti inflammatory effect in lungs

[Emerald52 in reply to Patk1]

Thanks Patk1, Have been reading on internet today that azithromycin seems to have less side effects than doxy. So thats also something for me to consider.

[KitKat1954]

Hi Emerald. I have bronchiectasis and mild emphysema. I was experiencing many bouts of pneumonia over a 2-3 year period. My pulmonologist put me on azithromycin 3 X week. I stayed on it for six months. After stopping it, it has been 2 years without an infection. Apparently, azithromycin has an anti-inflammation component which helped my lungs heal after so many infections. She wanted to continue it longer, but I chose to go off it. Of course I will go back on it if infections return.

[Emerald52 in reply to KitKat1954]

Thats another good point KitKat. Can always stop it at any time.