I got put on azithro following a trip to heartlands 5 weeks (ish) ago.
What I was wondering was, for those of you who are also on this for treating their asthma, how did you feel!? Did you notice any significant change!? Did it last long!? Did you still get infection on top!? What dose was/are you on!? Any grand advice you can give!?
Sorry for all the questions!! Just being curious!!
Xxx
(Ps, please dont make this into a thread of compition ie i was 2000mg everyday etc etc, just want friendly kind words of how your experience with this treatment was)
I started off on azithromycin originally 250mg 3 times per week and my consultant then changed this to clarithromycin 500mg twice a day. Personally I get on better with the clarithromycin & have been on them about 18 months total now.
I wouldn't say it was a miracle answer & I didn't notice huge improvements asthma wise, however with these things I guess it's individual.
With regards to infection obviously it wasn't originally prescribed to prevent infection & I haven't found it stops me getting infections but... Personally I have found that when I do get infections they sometimes don't seem 'quite as bad' as they have done in the past if that makes sense? & sometimes i don't seem to need so many extra/ different antibiotics on top again.
Also seem useful as I am on immunosuppressants & catch quite a few various infections & they seem to help with this.
One thing I found & they will keep an eye on is theophylline levels as they are known to increase this & mine increased quite a lot & dose can be adjusted etc.
Hope that little ramble was of some use
Thank you so much for your reply.
Intersting to hear about changing over to clarithromycin, i used to be given it a lot for infections in past but it was interferring with my aminphyllin levels. Recently though the pred as damaged my kidneys so my levels dont really jump to being toxic like they used to. I was told that the azithromycin can also interfer with levels though.
Ive noticed that my peak flows and lung function as increased slightly which im happy about.
Im a little worried though (i know shouldnt as hes a blinking good doc who knows his stuff) but the dose im on is 250mg daily, but ive heard a lot of people saying the dose that you were on. My local docs always question as to whether its correct, it must be as that was on the prescitption, but it makes me wonder why its not heard of that often.
If you was to get an infection on top of maintenance antibiotics, would tou have incread dose/frequency of that med or would you get given another type on top!?
Sorry for all the question, im sure my consultant told me most of this on the day but it was my first trip to heartlands and i got told a lot and my brain only seemed to retain a certain amount before it started screaming overload at me.
No problem i'm the worst at forgetting to ask things at the time & can relate to 'over load'
For infections I am always given a 'different group' of anti biotics & not any more of the 'mycins' so to speak , which one varies depending on what type of infection and how many of a paticular antibiotic I've had in the past to try and stop resistance I suppose.
I've found every gp ( other than my own) seems to have a flap about my long term dose & the ever keen pharmacists!! but as you say my faith is with my consultant! They deal with the difficult/ severe people every day where as my poor gp admitted I'm the only brittle asthmatic he has on his list & we joke that he always likes to see what my consultant is planning next & what new treatment ideas might come his way! I'm so lucky he's so supportive & just does as he's told by the consultant really I've heard some gp's can be less so! Only my consultant changes anything is the agreement we have for the asthma.
Fingers crossed it will be of some help to you I'm hoping to find 'something' that will enable me to reduce the pred hence the immunosuppressants.
Im back with the big consultant in 2 weeks but by then i would of either forgot these questions or have had new ones lol.
Im with u on the whole gp thing. Sometimes though with being the only brittle its a tad annoying as i rock up feeling worse for wear, they feeak and send me straight in. Boo!
Thanks for the info on the antibiotics thats useful, i still get a little confused by it all.
What immunosupresent you on, i desperatly want to get off pred also .
Xxx
Hi Charlie,
At my first appoitment at heartlands with Dr M about three years ago (maybe longer??!) was started on azithromycin 250 every day. At the time I wasn't going two weeks between infections and was really struggling. Dr M started me on azithromycin and also did a broncoscopy and found that I'd got 3 bugs growing (that started the road tO another diagnosis) so I started a 14 day course of three different IV antib's. Since that and being started on azithromycin my infections have been about half which has made such a difference.
When I do get an infection i have the bugs tested to see which anti b I need. If I need one in the same group as azithromycin then I stop azithromycin but if it's a different group of anti bs then I continue taking my azithromycin.
Dr M is very good and v kind! really hope it helps you! Feel free to ask any questions if I can help
Alice
Hey Alice,
Thank u muchly for replying.
That is so reasuring to hear that Dr M has taken the time to investigate and help you to that degree.
I thought they were all extrenly kind when I was there, and hes having me admitted for around two weeks next month which I must say, I an alittle nervous about as it seems mum wont be with me for the whole time and I obviously know no one
I am praying that things do start to change. Since ive been on the azithro my lungs do feel different (if that makes sense) and it has shifted the previous bugs that I had growing in my lungs for so long. I just hope that with the next infection I get it all goes back to the way that it was before hand .
Xxx
Thanks Charlie-warlie,
I have just been started on this too but not primarily for asthma and was also wondering about infections on top etc. Will be helpful to read replies.
Hi, I was put on azithromycin 5 months ago by my consultant as a last resort & it has been amazing for me I was actually able to get back to work after 6 months of being on the sick because of my asthma. I haven't got brittle asthma but it is severe & I was actually able to get off the pred for a few weeks at a time.
When I was first put on them I was on 250mg everyday for 6 weeks now I take 250mg every other day unless I'm on other antibiotics. I still get infections which makes my asthma bad again, but I work with children so im surrounded by germs. I have noticed when I do get ill & have to go on different antibiotics I seem to start feeling better quicker.
As lporter163 said your reaction to any drug is individual so what works for one person might not work for someone else, but if youv'e noticed a slight difference keep your fingers crossed it continues getting better. I found it really strange when the azithromycin kicked in & I could breathe properly.
Hope this helps
Thank u all so much for ur kind and helpful replies. Its great to hear other people experiences, pros, cons etc etc also very helpful.
Im praying this is the drug i need and i can get back to working...that would b ace!!
I didnt think i would get so excited about a drug (cant shout about it like this anywhere else-will get reported to the police lol)
Xx
For those on this drug ana interested on what other antibiotics can be taken along side this one. I have so far in the last month also had oral Augmentin and amoxicillin. Without making any changes to set dose of my azithromycin!!
Xxx
Thanks Charlie_warlie, they are penicillin based antibiotics though and azithromycin is a macrolide type as is erythromycin/clarithromycin so leaves anyone allergic with doxycycline, trimethoprim etc
Is it a long term medication or reviewed say every 3 months?
And if ur weird like my mum, shes allergic to doxy also so she would be screwed lol.
Im on azythromycin for 4 months at 250mg daily and if I have improvments (inflammation wise not infection wise) then I am to stay on it. If no improvements then i come off
I take the immunosupressant mycophenolate mofetil with the aim being to use it as a steroid sparing agent. I was told it was one of the 'newer' type immunosuppressants & is supposed to have less side effects than some of the others. My consultant went through all the options & we decided to try this other some of the others such as methotrexate.
It was a big decision to try them & they do have a fair few side effects I've found but again it was all explained to me & advised that some people can't tolerate then at all.
Since being on them I've had some infections due to the lower immunity but what I'd call in strange places that I've never had problems with before such as skin, ear, kidneys etc hence I'm also working my way through some of the different antibiotics and they look up what goes with all the other pills & potions so to speak (I'm also allergic penicillin)
Things did start to settle but my steroid dose at the moment is actually higher so not sure if just a general blip or it's not going to help. We've decided to give it a bit more time & see. No idea where we go if that doesn't help as sub cut isn't an option. It sometimes feels like your being told there isn't much else they can do!
Sorry that was a bit of a waffle but hopefully answers your question & if the subject of trying it ever comes up you'll have some idea as I found the info very limited.
I take the immunosupressant mycophenolate mofetil with the aim being to use it as a steroid sparing agent. I was told it was one of the 'newer' type immunosuppressants & is supposed to have less side effects than some of the others. My consultant went through all the options & we decided to try this other some of the others such as methotrexate.
It was a big decision to try them & they do have a fair few side effects I've found but again it was all explained to me & advised that some people can't tolerate then at all.
Since being on them I've had some infections due to the lower immunity but what I'd call in strange places that I've never had problems with before such as skin, ear, kidneys etc hence I'm also working my way through some of the different antibiotics and they look up what goes with all the other pills & potions so to speak (I'm also allergic penicillin)
Things did start to settle but my steroid dose at the moment is actually higher so not sure if just a general blip or it's not going to help. We've decided to give it a bit more time & see. No idea where we go if that doesn't help as sub cut isn't an option. It sometimes feels like your being told there isn't much else they can do!
Sorry that was a bit of a waffle but hopefully answers your question & if the subject of trying it ever comes up you'll have some idea as I found the info very limited.
Hey!! Thank u so much for all this fab infor, ive stored it under the crappy lungs filling cabinate in my brain!!
Xxx
Hi, hope it makes a difference to your asthma control. I was given this by Prof Maurice 3 years ago and was supposed to take it indefinately three times a day. I was given it whilst admitted but was not happy after reading the side effects and being on long term antibiotics in adition to steroids et al so didn't take it for long but for the time i did take it I don't think it made a significant difference. That said we are all different and this may work for you, fingers crossed. I have found over the years that when you least expect it something happens that impacts positively on my asthma hope this is a good treatment for you, take good care, Lois.
I think i can now add doxy to my list of antibiotics ive had.whilst beinf on azythromycin!! And if not mentioned before. Amoxicillin. Im certainly trying them all!!
Xxx
Hello
I have asthma, some allergies and low grade bronchiectasis. In addtion to my other meds, I was put on 250mg a day of azithromycin for the recurrent chest infections caused by the bronchiectasis rather than the asthma. This was in January 2010, that year I had one nasty chesty infection when I was switched over to clarithromycin for two weeks. I've been back on the azithromycin since and haven't had a chest infecton in all that time - it's been life changing for me.
Have to admit, the 5 weeks out of costa i had (record for me) my life felt different, i was out daily walking dogs not getting as out of breathe and generally felt that bit better. BUT then my latest attack last week came on very quickly, the quickest ive had and i wasnt impresses. Not sure if this is coz of new meds or just a random out the blue thing
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