Charlie, you have recently stopped AZ. for cramping. How are you? Hope you are better.
Is anyone else either using AZ or have used AZ in the past. What experiences have you had, etc.
I have been on AZ for two monts and am having many fewer infections, infact none.. But of course I would rather not be reaping havoc on my GI tract and breading SuperBugs.
Thanks for any advice in advance.
Best
Russ
Just bought some to take as it happens. It was one of the two antibioics recommended by my consultant at my last review (the other being Gentomycin).
Your comment about impact on GI tract and contributing to superbug creation. Was that a comment particularly targeted at Aithromycin or a generic concern about taking antibis vs not taking antibis? Patient guidance info on the internet and in my medecine pack doesn't single these out as issues, so I'm suspecting the latter ... but if you know diffrerent, do tell!
I have been taking Azithromycin for a few years now & it has made a huge positive difference. It's important to take it as directed though. I would be interested to know of anyone's experience of discontinuing it after a long spell & whether or not all the previous symptoms come back. My symptoms improved soon after commencing it. I have far fewer infections (1 or 2 a year at the most) & very little mucus since starting it. Not had any GI problems.
I have been on AZ for almost 6 years now and have not had any major infections other than pseudonomus which comes and goes about 2-3 times a year but I use Toby about 3 times a yer also. I take AZ 3 times a week and my Doctor says I will probably be on it for life. I have NO reaction to the AZ. I think in my case it keeps me from getting pneumonia and ending up hospitalized.
Hiya Russ,
Yes I stopped but I'm still okay, I must say it does work well, I still cough up but nothing like before and also got my taste and smell back,but I still do my neb twice a day and symbicort only at night, going tomorrow to GP at the VA I will discuss again with them and hope to get an XRay to take another look will let you know what they say.
Regards,
Charlie
Steve thanks for your valuable infomation on this topic.. Yes you are right it is the latter. More responces than I thought an all valuable beyond measure. Do you use any GI track bacterial replacement ? I am using a replacement called PB8 two capsuals a day.
I would like my stools to have a slightly more "normal" fragrance if I can mention this in our public forum. Oh hell, it's our lives tht we are battling for here.
Best
Russ
4Jean, great to have your feedback. I have not stop it so far. Its only my third month. So far it seems that the response of those on our site have been very positive, even over a long period of time as Dale reports.
It has been my experince that my life has been changed in such a dramatic way. No new infections and much increased energy levels that it seems it should be a mainstay of treatment.
Glad you are doing so well.
Best
Russ
Bes
Dale Im glad you are doing so well. Six years!!!!!
Do you use any bowel bacterial replacement?
I also realize that since each new lung infection adds to the damage to the bronchioles, that this treatment is probably slowing the progression of the disease also.
Best
Russ
Great Charlie. I'm wondering if you are planning to resume the AZ therapy.
It sounds like you are ok. Please keep me posted.
Best
Russ
Haven't found the need for anything special Russell. That said my pooh has always smelled pretty bad!
I do have a breakfast diet that tips its hat to the stomach and regularity though - pro-biotic yoghurt + bran flakes and full fat milk (I can say that last bit now that the UK experts have come out and said full dairy milk is not bad 4u after all) + baked beans on wholemeal or granary or dark rye toast. I also get through about 2 kg of fruit (half that once you have stripped it down to the edible bits) a day starting at breakfast. I am lucky enough to live in Thailand where fruit is plentiful varied and cheap - between $1 and $1.5US a day per kg - I internationalised that to US since some cannot do the mental gymnastics to convert GB pounds and very few would know what 30-45 Thai baht is worth!
No Russ I do not and my Doctor has never suggested that I do take a bowel bacterial replacement however I do eat yogurt a couple times a week and drink apple cider vinegar I think the key for me is exercise which I get plenty of working in my yard.
Hiya Russ,
Just got back from the Doc. said she was happy about the progress said to still take the AZ even that I'm feeling okay my choice,so I nedd to deceide,I really think that I will see how I do without it, as we all have said how fast it does work when you do take it,so I will try as I have been off it now for 3 weeks will keep you all posted.
Note she said there is a new drug approved by the FDA for Severe Asthma suffer's wants me to try but of couse the VA hasn't approved it,must cost too much called IL-5 Mepolizumab.
We always have been test Rats at the VA but somebody has to do it,I must say that they have taken good care of me all these years so no complaints from me.
Okay Regards,
Charlie
Charles, glad you doing well it seems. So this sounds like a good trial for you. Are you still having the cramping? Please keep me posted.
Best
Russ
Dale, good to hear. I like how I can learn from all of our different experiences.
I remember how you spoke of the merits of apple cider.
Keep me posted.
Russ
Steve, thanks for the update on your diet. I am slowly changing my diet that is all about oat meal and other cereals with plenty of fruits along with mostly chicken as my protein source. Yogurt and probiots. Today I listened to a radio program about the use of prebiotics for depression that is in the experimental phase. Aprently the prebiotcs provide "food" for the bacteria that we ingest in the probiotics.
Ant thoughts about "Prebiotics"
Anyone else who might read this please respond if you have some experience or knowledge on the subject.
Best
Russ
Hiya Russ,
Doc. seems to feel what I had was a GI bug not from the AZ which I feel she is right as I looked back on my History and they had found one of the bugs I had ( Kansassi ) that I was on 3 meds to kill that one, of which was AZ taken for 1 year
which did go away and I never had the cramps.
So as I said I will try staying off and see what hapens will still do everyting else but seems like this AZ is the best thing so far from what we read from all the others especially taken it for 6 years will keep you all posted.
Regards,
Charlie
Charlie, that is good news. Will be interesting to see how you do being off of the Az. Keep me posted.
Best
Russ
AZ has been the secret of by bronch. It simply worked as a single course, only repeated after chest infections which lead on from a head cold. After years of coughing, but not great expectoration, far less than many on this forum, my bronch pretty much ceased to be a problem.
I clearly do do not have a serious case of bronch but for me AZ was the secret and magic bullet
Broadsword, this is an interesting experince you are bringing to the table.
How long was your course of AZ. For example I am just finishing a three day a week dosing of three months.
Glad you are better.
Russ
It was several weeks not months starting with 500mg doses and diminishing. I know some people take AZ only several days a week as a maintenance dose. Mine turned out to be largely curative. Try researching the British Thoracic Society (BTS) BX guidelines. My consultant was a contributor.