Azithromycin 3 times a week

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I have been on Az now for a few years & I am one of the lucky ones...it has been amazing! Will I have to take it permanently now?If not, what experience have others had with regard to discontinuing  it?

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  • Posted

    Hi  Jean   I have never had this type of antibiotic so can you tell me Does that help with your breathing  especially at this time of the year ?
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    • Posted

      marion - Yes it should help.  Azith works in 2 ways and is very helpful with gram negative pests like HI and pseudo.  1.  It breaks down the biofilms around the pest.  2.  It help cut down inflammation.  As I mentioned to Jean my con has prescribed it because of the inflam properties.

      Susan - I hope Azith is very beneficial for your dh, especially if he has been having constant infections.

      love cx

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    • Posted

      For me it has proved to be beneficial all year round. Fewer infections, less mucus &a less coughing.
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    • Posted

      Hi cofalot , I must say I like the name you have given yourself.  Thanks for advise on AZ I will ask my doctor about it, although he is not very clued up on bronchi  only COPD   I am very fortunate in the fact that I only get about 2 chest infections a year.  I use a Seretide inhaler every day and night which is supposed to keep infections at bay.  Not very sure if I should be on any medication,  I do daily clearance which helps,   II am 71 and active so the breathlessness annoys me.
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    • Posted

      Thanks.  A lot of medics are't clued up on bronch in my experience and I've found out the experience of many.  That's why I firmly believe we need to be under the care of a respiratory consultant with a special interest in cf/bronchiectasis.  Non cf bronch has no extra funding as CFers quite rightly do and funding has also gone into copd.  Bronch is defo the orphan of the respiratory world - we are funded, according to my con, on an as and when basis.  

      Really pleased for you that you have only 2 infections a year - great news.  Lung clearance too - brilliant - best thing we can do for ourselves.  

      Re medication you might want to check with your consultant what she/he considers will be of benefit to you.

      Good luck

      cx

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    • Posted

      Thanks,  I need to have my doctor re-refer me to the hospital.  I was under

      consultants care for about 2 years, but as he said I was managing the clearance well, I was discharged.  Interesting what you said re funding, I don't know one single person with bronchi, yet having joined this forum, there seems to be quite a few of us.  Perhaps I might try to speak to our local MP  (thats if I can locate her)  This forum is a mine of information coming from personal experiences

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    • Posted

      There are 2 other reputable sites which might be of interest to you.  I won't put links up or it will take ages waiting to be 'moderated.  They are Health Unlocked/British Lung Foundation (you may have to select copd to get to BLF) and Bronchiectasis R Us.

      cx

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    • Posted

      There is a troll on BLF at present as there are no moderators on at the weekend.  Just to say it is normally very supportive easy to use site.  The members are predominently COPDers but there are folks with many other lung conditions including bronch.  

      cx

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  • Posted

    My husband starts this tomorrow we are hoping for great things as  the last few months have been horrendous. X
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    • Posted

      I really hope it will help your husband as much as it has helped me. Let us know how it goes.
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  • Posted

    I am pleased Azith has proved so beneficial for you.  I do know of some bronchs who have some months off in summer.  However we are all different and I think you should discuss it with your consultant.

    I have IBS too and found it difficult to tolerate because of GI probs.  The GI is a bit better (though not right yet) and I am nebulising Tobramycin 1 month on 1 month off and so my consultant is trying me on Azith 1 twice a week for its inflammatory properties to help control my asthma.  I am finding I still have probs, although not the pain so much and it has reduced sputum and I haven't had a high temp since starting them - so bronch improved.  Hoping the GI subsides a bit allowing me to keep on them.

    Sorry rambled abit.  The only way I guess you would know is to suck it and see.  Were you colonised with a particular pest originally?

    cx

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    • Posted

      My husband has just completed tobramycin IV for ten days. He also had Nebulised Colomycin but couldn't tolerate it. 
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    • Posted

      Sorry to hear that.  I couldn't tolerate nebbed colomycin either.  Fine at assessment but eventually became so breathless I couldn't string a sentence together and my GP sent me in on blue.  Although I get breathless spasmodically on nebbed Toby, it is not so dramatic and it keeps the high temps down.  Soon be on round 4 so will see how it goes.

      I hope the IVs helped your dh and that he is feeling a bit better now.

      cx

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    • Posted

      Been such a roller coaster, told by cons one month ago no more treatment to be offered as end stage. 2 weeks ago blue lighted in again and a different consultant saw him. First thing he did was 2 units of blood as red cells were so low. Heart scan and lung scan. Put on Tobramycin IV and Levofloxacin IV also potassium levels bought up. Whilst I'm still very aware that things can go pair shaped then their is a huge difference in him, long may this last. Still very sob and tightness and limited mobility but a def improvement. I spoke to my GP concerning Az as it's normally consultant led, he has prescribed it and will take it alongside Levofloxacin in tablet form that he has been discharged with. This episode kept him in 13 days this time, 6th admission this year ! This new cons was just brilliant and gave us some hope, at least he tried, very different to the cons he has been under for last 5 years. I saw her on the ward a few times, she never once made any eye contact with me and not once did she ever go and say a word to my husband. Have an appoint with her in August and I will be asking why she didn't offer us this treatment. My GP said if I'm still not happy with her he will request we change cons. My husband also tolerated the Colomycin challenge test but 2weeks into it he had to stop using using it. X
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    • Posted

      Oh I am so sorry.  Your dh and yourself have had a very rough time indeed.  Glad your GP sounds very proactive.  If you don't get the support you hope for from his usual consultant and your GP is with you on changing, could you  be referred to the consultant you found to be helpful during your hubby's hospital stay.

      Hope all goes well for you both.

      cx

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    • Posted

      Yes that's the plan, my GP has offered to write a letter requesting this. Can I ask how long Az takes to kick in ? X
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    • Posted

      Can't say for sure susan for sure as I don't take the normal 1 three times a week, only 1 twice a week and we are all different.  I have taken 5 now and I have noticed less gunk, which is usually copious for me and it is still pale green, which is also unusual to stay that good for so long. 

      I hope your dh sees a benefit quickly.  Please let us know how he gets on.

      cx

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    • Posted

      SOB has improved too, although I did up my steroid inhaler to twice a day, which my matron thought a good idea.  So it may be a combination of the two.  Difficult to say.  Only way I would know would be to stop one of them.

      cx

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    • Posted

      Have read up on it, seems to work quite quickly. My husband will start tomorrow, he has 6 tablets, one to be taken every other day. Yes I will keep you informed. Thanks for your advice and I wish you well. Xx
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    • Posted

      My mother had a similar condition to ours - many infections etc. Az completely turned her around. 

      Az really popular amongst people who can tolerate it because not only does it have good anti bug properties, it also reduces the inflammation response and therefore breaks the vicious circle in two places.

      Good luck

      S

      Ps sorry just noticed cofalot mentioned the anti inflammatory. Please forgive the repost! S

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    • Posted

      No problem Sam, thankyou and it's good to hear your mother is tolerating Az  . I wish her well x
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    • Posted

      Thanks cofalot. Yes I suppose I will have to try it but feel reluctant to do so ! What a shame you are unable to tolerate it so much but good that it is helping a bit for you.
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