REACTION TO MY TABLETS

[Suesal46]

Hi everyone my doctor at the hospital put me on AZITHAMYCIN think that’s how you spell it three a week mon wens fri after only a few weeks I had to come of off them played my digestive system up have COPD Brochihectosis and-the bug Hemaphilus Influensa in my sputum just feel I have let people down my docs they have tried all sorts to help me now they are going to try mo on a nebuliser twice a week to see if that helps so fingers crossed this is right for me anyone else had trouble with AZITROMYCIN .??

[soulboy118]

I've been on (azithromycin) it since January and not had one bit of trouble with them , also only had one slight infection which I got rid of in a week , they do offer doxycycline on a long term basis perhaps this antibiotic might be better for you

[Suesal46 in reply to soulboy118]

Yes thanks for your reply soulboy118 I have them now for my rescue pack I will mention it next time I see my doctor keep well sue

[Hidden]

No you are not letting them down. They are letting you down. HI is relatively easy to treat but azith is not really the antibiotic to do it. It doesn't sound as though the doc you are seeing is a bronchiectasis expert

Most hospital doctors are general respiratory consultants and are not trained or experienced in bronch.They tend to use azithromycin as a catch all on.everybody because it can work well but not if it is targeting the wrong bug.I am suspicious because they are talking of putting you on nebulised antibiotics which is only a treatment to keep bacteria numbers down after oral or IV antibiotics have knocked them on the head. It really does sound as though they are knitting fog in the dark.You need to check whether you are seeing a bronch specialist and if not, look for one in your area and insist that your GP refers you.All abs give us gut problems from time to time.

[Alice70]

I have just gone back on azithromycin, I dont no if I have side effects on them as I carnt get a straight run on them ,I keep having to come come of them to go back on doxycycline because of hemaphilus influenza bacteria ,this is saying to me they are no good for that bacteria ,

[Suesal46]

Hi Alice70 I was the same but I went on them then had to go on doxycycline for 2weeks but they made my tummy so uncomfortable and I had pain as well I was bloated up all the time plus I have a hieatus hernia so could be that made it worse?? All I know is I did not feel right on them,,,but good luck let me know how you get on xx

[illawarra]

Yes Suesa146 I have had a problem with Azithromycin. It impacted my breathing and I could not take it. I also have bronchiectasis. I do not tolerate antibiotics well at all. I hope that the nebuliser is helpful to you. What will you have in the nebuliser?

[Suesal46 in reply to illawarra]

Am not sure what my doc said think he said Salt Nebuliser?? Thanks for your reply do you know I think I could be the same with some tabs When I had ammoxacillin for my rescue pack I was ok on them and right at the end of my corse my chest was a lot better and my sputum was white but about less than a week later it was infected again? Well at least my sputum had gone a funny colour and didn’t feel so good The doc took me off them because with me having Hemaphilas Influenza bug it didn’t kill it and now my rescue pack is Doxycycline so am waiting now to go have a trial on this Nebuliser but in the mean time if I get a infection got take my Doxy hope you are keeping well thanks for your reply x

[illawarra in reply to Suesal46]

Hi Suesal146 thanks for your message. Oh yes saline in the nebuliser is really helpful to thin the mucous and help with bringing it up. I do that daily sometimes two or three times. If you can clear your mucous it reduces the number of infections. Best wishes to you from Oz.

[Suesal46 in reply to illawarra]

Ahh thank you when you put best wishes from oz that must mean you live over there, we visited Australia in 2010 for 6 weeks because my husband went out there in this 60s with the big brother movement had a great time and didn’t have one chest infection keep well thanks for your reply x ps when you said those azithromycin impacted your breathing what did you mean? Sorry a bit early sometimes lol x

[illawarra in reply to Suesal46]

Suesa146. Yes I am in Australia. I live south of Sydney. It is a great climate here. So glad you had a good time here and was infection free that is great. What I meant when I said, difficult to breathe. Apart from bronchiectasis, I have a rare condition called idiopathic subglottic stenosis which means narrowing of the trachea due to scaring. It has to be lasered open periodically to breathe. So given my airways are narrow already if I react to a medication that impacts breathing it becomes really difficult to breathe. Right now I have a trach in due to it closing over in December last year. I hope you feel heaps better soon.

[Suesal46 in reply to illawarra]

I see Illawarra you didn’t need those aziths making you worse you got enough on ,my husband loved oz when he was there in the 60s he was mainly in sydney some of the sudhurds he found loads of work there he was in a place called I think summer hill he had such good jobs but from what I can make out he was in the pubs spending his wages lol one of the pubs in summer hill was the summer hill hotel and we went in there and met some nice people in there he has old black and white photos in a few places he lived so we went to them and as much as we could took the same photos lol it was brill and the weather FANTASTIC We love the ferries of cause the opera house it was being built while he was there Blue Mountains we stopped at Melbourne Tasmania and Sydney great place for the young people WHOOPS SORRY FOR GOING ON it’s made me want to look at my photos again you take care so good hearing from you again keep well love sue x

[illawarra in reply to Suesal46]

Hi Sue yes there is a suburb summer hill. Going on the ferries on Sydney harbour is one of my favourite things to do in Sydney. The Opera house looks stunning on the harbour. We are 80 km from Sydney. We lived in Melbourne for 6 years early in our marriage and loved it there. We have many happy memories of our times in Melbourne. Sounds like you had a really great time here and saw quite a bit on your trip. Yes get the photos out, it is good to go back over fun times. You keep well too. xx Noeleen

[Suesal46 in reply to illawarra]

Thanks Noeleen am realy going to try and keep well you do the same although it’s a struggle at times when we were in Sydney we stayed in a hotel in WOLLAMALOO hope got that right love it there and loved the name,,,lol great pub there to for a steak take care from sue x Ivan x Moby wuff wuff xx

[illawarra in reply to Suesal46]

Yes it is a great name Sue, there have been various suggestions of Aboriginal meanings. It is a struggle to keep well. I find it hard here in our climate so I feel for people with lung issues who live in cold climates with snow. I would not cope. I can get chilled in a summer breeze!! I don't tolerate wind. Have a great day Sue, Ivan & Moby wuff wuff. Lovely to chat.Thanks for your message. xxx

[Suesal46 in reply to illawarra]

I totally understand about keeping warm I am terrible really feel the cold bad and poor Ivan is alway sweating but same as he says he has got a fan on the table winter and summer so he soon switches it on Good night noeleen keep well lovely to hear from you again love sue xx

[Ribbon2079 in reply to illawarra]

How do you get the saline? Prescription or over the counter and how much is used in the nebulizer?

[Bella395 in reply to Ribbon2079]

The GP can prescribe 0.9% sodium chloride in 2ml or 5ml nebules. There are higher strengths (hypertonic saline) but these can only be prescribed after a test dose given under hospital supervision.

[stamford1234]

You mustn't blame yourself. I am sure they will find the right meds for you. You will just have to be a bit assertive. After all, it's their job not yours. Good luck with the nebuliser

[Suesal46 in reply to stamford1234]

Yes I will try thank you for your reply sue KEEP WELL X

[Bail8y]

Hi I am on azithromyacin for 18 months after respiratory failure. They also diagnosed Bronchiectasis just after when I had a scan. I have had no trouble at all and I have taken Doxycycline 2 times since I was ill. I don't like Doxycycline as they upset my stomach and burning mouth. But amoxicillin isn't strong enough. I can't fault azithromyacin. They also changed my inhalers to relvar Elipta and spiriva. Considering what I went through I'm feeling very good. I don't use nebuliser anymore as that made me worse.

[Dietrech]

I couldn’t tolerate Azithromycin either, it made me so unwell. I also have COPD ASTHMA AND BROCHIECTASIS and my lungs are colonised with haemophilus! I have regular sputum specimens cultured, which are sensitive to Amoxycillin and Doxycycline. I take Amoxycillin 3G daily alternating with Doxycycline daily, which helps my chest but doesn’t kill the bug totally! I’m oxygen as required too. DONT FEEL YOU'VE LET PEOPLE DOWN-YOU ARE THE ONE SUFFERING!! Are you seeing a respiratory consultant? That would be good as they dealing with our problems constantly. I have never smoked but asthma and radiotherapy caused severe lung damage! Do you use your nebuliser with VENTOLIN? When I need I use it three times a day! Let us know how things go? Big hug ❣️

[Suesal46 in reply to Dietrech]

Hi Dietrich thank you so much for your response to my E mail you have know idea what that means to me you are the third person I have had a reply from who couldn’t tolerate Azizthmycin yes like you I have COPD ASTHMA BRONCHIECTASIS and HAEMOPHILUS INFLUENZA I HAVE A LOVELY DOCTOR AT MY HOSPITAL HERE IN GORLSTON THE JPH JAMES PAGET HOSPITAL he sent me to Addenbrooks hospital because I think he needed help on how to treat me as I think we had gone down lots of Avenues the last time I saw him only about a week ago he has decided that I should try a salt nebuliser and if I get another infection to go on my rescue pack DOXYCYCLINE But after reading your E Mail I might have a word with him and copy your E mail about trying Amoxicillin and Doxycycline alternitivley and see what he says he is a great doctor and has let me phone his secretary to make an appointment to see him whenever I have been poorly which has been a lot just lately I packed up smoking in 1972 just befor I had my last daughter .Thank you I realy feel your E mail has given me somthing to think about Dietrich I would love to keep in touch take real good care and keep well lots of love Sue xx

[Dietrech in reply to Suesal46]

Of course so would I. I’ve never smoked but I do like a few glasses of Chardonnay of an evening! The sputum specimen on my last three checks have been sensitive to Doxycycline and Amoxycillin so your Dr would check if that’s the case with you. I’m not infection free and never will be because it’s “colonised” my lungs, and two bronchoscopies and washouts haven’t helped. I just do. What I can when I can. Yes do please keep in touch Sue. Doing myself a veggie chilli so speak soon. Marlene xxxxx

[Suesal46 in reply to Dietrech]

Cor veggies 🌶 chilli my husband loves his veg and chillies I love a them to but mine has to be very mild or my Hietus hernia will give me loads of gyp!!i see what you mean now Dietrich never heard of these wash outs,I know my hemaphylus influenza was sensitive to amoxacillan so think thT is why he has put me on Doxy for my rescue pack thank you so much for letting me know been great to E mail you You take care keep well love sue xx

[Dietrech in reply to Suesal46]

Sue, please feel free to email me [e-mail] we obviously have a lot in common! The washouts were done via a bronchoscope to see if they could identify any other bacteria! Night xx

[Brenda102]

Hi Sue,

I had problems with Azithromycin as well. Leg weakness and more difficulty breathing. I have several drug allergies, so my tolerance to meds isn’t great. My Dr. Explained that Azithromycin is mainly used to reduce inflammation rather than fight bacteria. I use a salt nebilizer which does help loosen the gunk. I take other antibiotics when U have flares. I have Bronchiectasis and colonize pseudomonas. Sometimes you have to keep on these docs, we shouldn’t have to.

Best wishes.

[Suesal46 in reply to Brenda102]

Thanks for your reply Brenda I really think I have an intolerance with a few meds I was really pinning my hopes on the Azerith but my tummy felt so awful and the pain was awful but am going to see how I get on now with this salt nebuliser my doc said they will send for me from the hospital to give me a test run if you like so fingers crossed .I hope you are getting on ok and thank for replying to me and letting me know keep well Brenda sue xx PS I hope you don’t mind me asking Brenda but what is Colonized pseudomonas ? Xxxxx

[Brenda102 in reply to Suesal46]

Hi Sue,

Some of us with bronchiectasis carry the infection pseudomonas. It is difficult to completely eliminate it. My doctor varies my meds so I don’t develop a tolerance. You take care as well, having a good week!

[Suesal46 in reply to Brenda102]

Ahh thanks for letting me know Brenda think that is a good idea to vary your meds you take care too and keep well, my husband had a letter waiting for him today when we got home it was from the hospital saying that he needs to have a Colonoscopy because he has had two out of three funny bowel test so he got to go and sort that out he is already waiting for a op for a knew knee he is in such

Pain with his knees to whenever he has had that one done he got to have the other one done we just got to KEEP ON TRUCKING take care love sue xxxx

[Suesal46 in reply to Brenda102]

Really seems like you had so much trouble on those Azith Brenda good luck in the future suexxxx

[Pwkav1]

Hi, im on azithromycin for 9 months up to now. I get stomach issues but outweighs how bad my asthma bronchitis and haemophillus influenzae was. I feel so much better. Didnt get on with doxy it didnt kill the bug but were all different. Hope you get to bottom of it all. Karen. Xxx

[Suesal46]

Thanks for your reply Karen I am so glad you get on ok with your Azithromycin I really was banking on them helping me every one had gone to so much trouble to help me but keeping my fingers and everything crossed that this salt nebuliser will help love sue xx

[santisuk]

The first line antibiotic against haemophilus influenzae is amoxycillin + clavulanic acid (most recognised brand name in the UK and some other countries being "Amoxyclav"), not doxycycline. Doxycycline is the second line defence if amox+clav doesn't work.* Just saying.

The bronchiectasis guidance* does not actually list azithromycin for any specific bug as 1st line or even 2nd line defence for any of the 8 common bacteria that infect the lungs of bronchiectasis patients, yet many (including me - 2 years and no side effects - number of exacerbations dramatically reduced in those 2 years) are prescribed it as a prophylactic treatment. Furthermore the guidance* notes that doctors should "Consider long term antibiotics in patients with bronchiectasis who experience three or more exacerbations per year" and recommends azithromycin or clarithromycin as the long term (ie prophylactic) drug of choice for patients infected by any of the bugs other than those colonised with pseudomonas aeruginosa. Doxycycline is the recommended alternative prophylactic drug if the patient cannot tolerate macrolide antibis (azithromycin and clarithromycin).

I suggest that azithromycin's use is as a general early catch-all for many of the bugs we face, rather than it being a specific antibi to target specific bugs. More than that, actually seems to be accepted as 'the best' choice. That's why, when a specific bug arises it's important to have the bug identified by sputum sample and take the specific targeting antibi on top of or in substitution for azithromycin (if postings on this BLF site are anything to go by there is no absolute agreement in the medical community whether to stay with the azith and take the specific bug-attack antibi on top, or whether to stop the azith while taking the targeting antibi. I adopt the former and it works well for me.

Judging by posts on BLF I do see references to quite a number of people taking doxycycline when other antibis are listed as being the more appropriate ones for the different bugs that arise (for bronchiectasis patients at least). Can't help thinking it's because it's a go-to historically popular drug for non-specialist medics who haven't the time to research and its relatively dirt cheap (important for the cost-conscious nationally funded healthcare systems like the UK's NHS)! Go figure, then make sure you are getting advice form a specialist if you are being advised by a generalist.

By the way suesal, if azith is causing you problems I guess it is possible that clarithromycin - the other macrolide - may not have the same adverse result as azithromycin. I guess also though that there's a reasonably good chance it will give the same problems, but I'm no medic myself.

By the way 2, you are receiving an annual flu injection?

*Source British Thoracic Society: Guideline for Bronchiectasis in Adults". Clearly that is guidance for those with bronchiectasis. It's possible I guess that having a combined COPD/bronchiectasis condition changes the guidance. I've never seen anyone reference similar guidance material at a detailed doctor-guidance level for COPD.

[Rich1957]

I’m the same Azithromycin played havoc in my stomach and made me feel nauseous continually to the point I couldn’t do anything other than sit down and feel sorry for myself . I suffered thinking the same as you , take what the doctor prescribed but it’s not worth it when you can have an alternative with little or no consequences. We are all different unfortunately it’s not one thing suits all .

Prior to them I took amoxicillin which due to over use do not work fully for me anymore , I’m now on doxycycline which seem fine for the last 2 years or if I’m really bad I’m given Co-amoxiclav but I’m really concerned about my body building a resistance to them so only have them as a last resort . I’m also using a nebuliser with sodium chloride 0.9% , 5ml amploules which helps shift my sputum and carbocisteine tablets help as well

All the best

[Suesal46]

Thanks for your reply Rich1957 yes it was awfull for me to with the Aziths and at times pain which realy made my mind up I can’t take any more of them I realy do think that I had so many Amoxycillin that it didn't help me as much so now have got to take my Doxy only when I feel I have got another chest infection and in the mean time I am waiting for the hospital to send for me to go try a nebuliser,,,, I was taking Doxy all the time at one point to try to keep infections at bay,,,the doc tested my sputumand said that Amoxycillin wasent any good for my Heamaphlus Influenza bug?? Weather that was because of over use or what I don’t know when I did take Amoxycillin for an infection it took me right to the end of my 2 week cause before I felt good and my Sputum was white but unfortunately I was only well for a week or 10 days before the infection came back again?? I loved having Amoxycillin for my rescue pack but it didn’t last ? Also because over the years I have had so many Anti biotic I get bladder infections which has left me with a thing called lichen slorosis ohh dear Rich when I walk I rattle lol I do feel fore you when you were on Azith!! Rich it was awfull and at the time when I had to come off it felt awfull because my doc at the hospital had tried so hard to help me sending me to Addenbrooks etc but can’t any more it was so awful keep well rich was lovely of you to E mail me love sue x