teddyd2 months ago

Who is the trial with?

Tdster43 in reply to teddyd2 months ago

Its being planned and would be across the UK; funded by the NHS (NIHR) if a grant bid is successful

Reply (3)Report

teddyd in reply to teddyd2 months ago

I have been on azithromycin for about 12 years. 3 per week all year round. To be honest I would be frightened to alter that. The only time I stop them is when I require other antibiotics.

Reply (4)Report

Alberta56 in reply to teddyd2 months ago

Same here.

Reply (1)Report

B0xermad in reply to teddyd2 months ago

Same here for 10yrs and I did try a 3 month stoppage but felt bad so was told to continue without the break

Reply (1)Report

kenta in reply to teddyd2 months ago

I’ve been on Azithromycin for about 7 - 8 years and would be very reluctant to change my 3 a week. I do stop them when on another anti biotic for flare ups.

Reply (0)Report

sassy592 months ago

Pete has been on azithromycin for years and takes it three times a week. He does very well on it and doesn’t take any break from it. I do recall though that when first taking azithromycin, if he had a chest infection he then went onto Doxy for a few months afterwards. Azithromycin has worked well for a long time. Xx

cofdrop-UK2 months ago

Sorry. Intolerant to all macrolides 🙁

Karenanne612 months ago

I haven't had a break from azithromycin and I'm not sure I would want to as I couldn't face another chest infection. It also helps to reduce inflammation in the lungs and can ease other symptoms , which I think it does for me.

Patk1 in reply to Karenanne612 months ago

Same here Karenanne

Reply (2)Report

Littlepom2 months ago

the replies just show how different we all are. I have lifelong bronchiectasis. I took it for 5 years. I had to stop taking it because I developed AF and dilated cardiomyopathy. It has never been investigated as to whether azith caused that. Actually, since I stopped taking it I have had less exacerbations than I had whilst taking it and I simply nebulise salbutamol and isotonic saline faithfully every day. For others it is a life saver.

lvn0619 in reply to Littlepom2 months ago

How many times a day due you nebulizer? I just started Tobi also. Thanks, lvno619.

Reply (0)Report

Littlepom in reply to lvn06192 months ago

I nebulise once each day when I am stable.Advice is twice. When you are nebulising Tobi I think that is twice. Maybe ask your consultant about nebulising saline with it. I always made my nebulised abs with saline instead of water. It is more gentle

Reply (0)Report

lvn0619 in reply to Littlepom2 months ago

Thank you. I do seem to have decreased my secretions since starting Tobi. I do use duoneb and saline as well.

Reply (0)Report

Maricopa2 months ago

I’ve been on a 3x a week regimen of azythromicin and one daily 5 mg prednisone for yrs. It has slowed how many exacerbations I get.

Danielmystar2 months ago

I've been on them for a few years now one a day I definitely wouldn't like to stop taking them

Puffed_out2 months ago

I’ve been taking it 3 times per week since before Christmas and haven’t had an exacerbation since but my specialist wants me to take a break from it over the summer months to see what happens. His view is that I either live on that and risk the view of it becoming ineffective or try a period off it and see what happens, and that I revert to a course of Ciprofloaxcin if I get an infection. Apparently his rule of thumb is 4 or more infections per year (I’ve heard others say 3 or more) would require azithromycin on a full time basis. So effectively I am about to start the same sort of trial but not as part of a formal study. Happy to report back!

garshe2 months ago

I take Azithromycin 3 times a week during Winter months but stop through Summer. If I have an exacerbation/Infection I take Amoxicillin for 2 weeks. I was told by my Respiratory team to stop the Azithromycin for the 2weeks I am on Amoxicillin.

xxSheila 💕

Morrison102 months ago

interesting. I’m on 1 daily Azithromycin since last December because of lot of infections result of my PCD and age. I’m patient of Dr Sullivan QE and theres not been any suggestion of reducing or stopping them. My PCD was clinically confirmed at age 84 at children’s department Leicester Royal Infirmary. I’m only child, my mother lived until nearly 112 so hopefully I have her good genes. NHS finally doing gene research I’m told. When she was alive I had several requests from USA for blood etc. but when asked here there was no interest. Hope your research goes well. Jean

Littlepom in reply to Morrison102 months ago

I see that we have the same excellent consultant, whom I have known on her way up the ladder for over 20 yrs. Just to mention. My GP surgery have just sent a request to me to enroll in Discover Me, which is a research project that they are cooperating with that is looking into dna history and its connections to our medical conditions. Those enrolled will receive lots of information about their medical dna in addition to their historical origins. I thought that this might be of interest to you because of your PCD and that it might be worth asking your surgery if they are participating.

Reply (2)Report

Morrison10 in reply to Littlepom2 months ago

Thanks for your reply. I’ve only been with Dr Sullivan 4 years, the other consultant had been seeing wasn’t helpful. My daughter found Dr Sullivan on line by paying and looking at all their interests etc. Very pleased and impressed at her help . Will ask my gp surgery re Discover Me. They are not good, even though I’ve been with them since 1958.

Reply (1)Report

Tdster43 in reply to Morrison102 months ago

There was a UK wide project on many conditions including PCD and bronchiectasis. Thanks to everyone who helped in 100,000 genomes project. It led to this work showing PCD is more common in bronchiectasis than we knew; pubmed.ncbi.nlm.nih.gov/357...

Reply (1)Report

brianj2 months ago

I take mine from Oct to April, works well, keeping me from infections.

MaggieB662 months ago

I've been on azithromycin daily for 8 years. When I did take a break for the summer a few years ago, I ended up getting infections. My specialist decided it was best not to change things.

I only stop now when taking other antibiotics for an infection.

Taking them daily gives me piece of mind.

Trishe2 months ago

Hi TdsterI've been taking Azithromycin, for goodness knows how long, but at least 8 or 10 years, I do have a break, just for the summer, I've had 1 chest infection in all that time.

I mentioned it to my consultant, that I have a break during the warmer months, he agreed that it was a good idea to do that, so hope that helps you to decide.

Trish

Lfcpremier2 months ago

I think it works well. Had a terrible time when 1st diagnosed with Bronchiectasis, infection after infection! Much reduced when I started taking azithromycin & here I am 12yrs later!I never stop.. 3x weekly. 👍

Digger02 months ago

I have not had a chest infection for the time I have been on it, having had 5 or more severe ones yearly for 10 or more years. I would not like stopping it! The Summer would make no difference as the bugs are still around.

LissacFrance2 months ago

Can only repeat what others have said. My wife has taken Azithro 3x per week for last 4 years with no side effects other than not being ill with Covid, not catching whatever awful bug I have had for last month. I don`t think she would change what obviously works for her.

Collienut2 months ago

I've been on it for about 7 years, I take a three month break every spring due to having tinnitus on the advice of my consultant. Only had one chest infection needing my rescue pack in all that time and no hospital admissions. I do start to get night sweats and 'hovering infection' during the spring break so I would be worried about coming off it for a year and would need it to be approved by my consultant before trying it.

Lutontown2 months ago

My consultant tried me on Arithromycin, 3 days per week, but it gave me a terrible sore ulcerated mouth, so soon gave up on that trial.

Pudding-302 months ago

Hi I've been taking azithromycin for over 5yrs for the first 3yrs it seemed to help, the last year I've found it hard to take them, they make me feel sick and generally under the weather, nurses, Dr's are trying to get me back on them but feel more poorly, I would be interested in the research, hope this helps 😊

helenlw72 months ago

When I first started Azithromycin my lung consultant suggested I stopped taking it from May to September because ‘people don’t get chest infections in the summer’ and no trials had been done on taking it all year, so I dutifully stopped taking Azithromycin on May 1st, but in June got the worst chest infection I’ve ever had! It took me a long time to get over it. When I saw my lung man in October he told me not to stop taking it again.

Timberman2 months ago

I am puzzled. This is an antibiotic and they are not usually taken continuously. So why is this one being used one a daily basis?

LissacFrance in reply to Timberman2 months ago

It also works as an anti-inflammatory. usual dosage is 3x per week with no breaks in the summer or any other time. Bronchiectasis does not take holidays, it is there for good or bad.

Reply (0)Report

Caspiana2 months ago

A majority of transplant patients take this three times a week indefinitely. BIt has worked for me so far. 😊👋

Timberman in reply to Caspiana2 months ago

I had an allogenic BMT 19 years ago and have taken penicillin every day since but it has no record of creating resistance as I understand it.

Reply (0)Report

Neville332 months ago

azithromyacin is a drug that should never be used on irs own according to national Jewish and Mayo Clinic.. this drug is used for Mac Mai, along with 2 other macro lids drugs to fight this bacteria..surprises me the lack of know,edge some of these pulmonary Drs have

Tdster43 in reply to Neville332 months ago

Hey Neville, you are quoting guidelines for NTM infection and I fully agree in that setting macrolides on their own should be avoided.

In the absence of NTM then azithromycin is recommended in 5 Bronchiectasis guidelines (British, European, Aus?NZ and others) as a treatment to reduce exacerbations of bronchiectasis. These bronchiectasis guidelines state it is important to screen for NTM infection -hence they are complementary. Hope my knowledge is now deemed to your satisfaction and that anyone concerned about being on azithromycin for bronchiectasis is reassured/ not alarmed

.

Reply (0)Report

Neville33 in reply to Tdster432 months ago

sorry. Not in the states and Canada..our top Dr.. do not recommend it because there is a 50 percent risk factor, if not more to get MAC again..if u build a tolerance to thst drug you are in trouble…I know some English patients in lung matters support group whose Pulmonary Drs do not give thst drug in its own..National Jewish top world renown Drs..say it’s a last resort drug, that is needed for Mac

Reply (0)Report

Maximonkey2 months ago

Hi Tdster43, I have been on Azith for 12 yrs and have had a 3 month break once in all this time. My consultant said there is no real evidence that having a summer break is beneficial. Having said that I would be interested in the results of any further tests. Take care Maximonkey