I had written so much but this site insists on pop ups that don't let you click off ! So I've lost the lot
Basically after months of struggling and bad experiences with GP's who have no knowledge or understanding of this condition I have been prescribed x3 azithromycin per week. Does anyone else take this medication and how do you find it?
I have been on 3 different types of anti biotics for a reoccurring chest infection for the last 5 weeks. I'm fine when I'm on them but within 48 hours of finishing them I'm bad again. I'm hoping that starting this treatment will help , but I'm feeling really stressed and down about it all. I'm 27 and have a 4 year old little boy. I try and stay focused on my husband and son but it's so hard when I feel so poorly all the time!
Hi Sabrina, sorry to hear you are feeling so down. I started Azithromycin a few years ago & it has been amazing for me. I occasionally still get an infection but when I do I have a course of different antibiotics to treat it. In the meantime though the Azithromycin controls the bronchiectasis & I only have a very small amount of mucus & most of the time no cough. It has really worked for me so I really hope it will do the same for you. Healthy diet & exercise also helps. Good luck & let us know how you get on. 😊 Jean
I shall endorse what 4jean says. I saw an eminent B. physician at the Brompton who had a published paper on B and using Az. Unlike other drugs in its group it has an anti inflammatory effect which is its secret beyond any antibiotic properties. I take it to overcome infections but originally I used it in a large dosage to rid me of the cough and mucous. It works for me when it al, returns after a cold but strangely it feels as though it is not working and the best results are when I cease. I guess it has done its job. So I take it for rescue purposes but I know others take it regularly. It has been the secret of my success but it is not a cure but it is a saviour, at least for me
Oh Sabrina I am sorry you are feeling low - that can be part of the condition. I have had bronchiectasis for 66 years and I can confirm that the treatment these days is better than in the olden days!
Sometimes you get a chest infection that is really hard to shift. Certain bugs are particularly hard to get rid of. I can't take azythromycin three times a week because I have a tricky allergic reaction to them on a long term basis but lots of patients do and they do really well on it. I take it for infections nonetheless and it is very effective on a short term basis too.
You sort of get used to living with a sort of low-grade feeling poorly - my specialist said it is a bit like having a low-grade flu bug for most of the time. I hope you have been taught how to move the mucus off your chest properly either with a device or the old-fashioned postural drainage way. The key to bronchiectasis control is to get rid of the muck that makes you feel so awful in the first place.
I think Sbrina first of all you need to tell your G.P. you want to see a consultant, it must be so hard with a young child. But i am afrid to say my husbnd is the same as you finish antibiotics two days later infection. Saying all that the last 3 months have been better no hospita stays (touch wood). And he went 2 wees with out an infection but got one on Sunday and bein treated at home. ut for a long time we just did infection psudsmona around and around for a year. but it is all about getting the right help and telling them what you want,but you have to stand your ground. Saing that we have fantstic G.P. consultant, and resportory nurse,and every one in the hospital were brilliant. But i did have to stand my ground one day and say to a doctor no this is what i think needs to happen. And to o that you need to know as much about the illness as possible and about you how i effects you and how you feel. Good Luck
Hi Sabrina I take Az. 3 times a week was dubious at first but definitely an improvement for myself anyway. How long is the course of tablets you are taking?? My doctor used to give me a prescription for 7 days when I got to hospital care they told me I needed at least 11 and maybe 24 days antibiotics Anything less was useless. I also learnt physio to get rid of the mucus and although I don't have a lot it helps. I also take Carbosisteine to help thin the mucus and this has definitely helped too. Good luck.
I am also on montelukast tablets every day, x2 puffs of ciclesonide inhaler per day and x4 puffs of serotide 250mg per day....
I have been asked to take azithromycin for 6 months, x3 per week, as I have had 7 infections this year. I don't have much mucus , it's the constant tight chest and tiredness that really gets me down the most. My consultant sent me for another CT scan which I had Friday and await the results , and also wants to insert a camera in to my lung to see what's going on ?!? That scares me as she said they want to see if I've developed cystic fibrosis !!?
All your support is so much appreciated thank you so much xx
Hi Sabrina...I am Cynthia from Texas....I feel your pain..in May I had so much tightness in my Chest that I called the EMS..I thought that I might be having a heart attack..I am also tired all the time because I wheeze so much at night I don't sleep well...I also was told by the EMS not to use the Puffers except in emergency...that I need to do the liquid vials that I use in my Nebulizer Machine...I als had a CT Scan a couple of weeks ago...I find out the results on Wednesday...I am afraid because I know that I am worse...at this point I wonder about Cystic Fibrosis also..I hope the best for you...This stuff is scary....
I have had Amox before , and it is not a strong enough anti biotics for our condition. I understand that doctors say it's the first one to try when someone has an infection and this may well be the case..... For someone who does not have Broncheiactisis! I have seen several discussions on here stating that it's not strong enough. I've learnt that GP's have little knowledge of broncheiactisis. If you feel no better please please go back and ask for a stronger anti biotic. You could always give a sample as well, and then they can determine which bug it is. Keep us updated :-)
So I finished my course of anti biotics to treat and infection 2 days ago, and guess what? My tight chest is back! I have taken 2 Azithromycin so far and no improvement ....
I'm not usuall a worrier , but I can't help but wonder why my lungs aren't good when I'm off the anti biotics??
I'm also curious as it's not like I'm taking nothing... I guess my CT scan may show more but I'm royally fed up this morning and full of worry. Is it normal to worry like this all time? I hope one day I just wake up and think I need to get on with it !
Best wishes to all.
Ps - do you remember a David in the group don't remember full name ? He was really struggling for ages and everyone gave fab support I loved reading the discussions and offering my experiences of B. Can't seem to find him on here now.
Sabrina do you have steroid puffer - I.e. Seretide? Do you have Ventolin (blue) puffer? They can help especially in warm humid weather. Worry makes your chest tight and your breathing shallow too. Slow steady gentle breathing through your nose can be helpful. If you start to panic or tighten up while you are doing slow breathing stop for a minute then try again. It will calm you a bit and help your chest too.
I wish I could hold your hand. I have had a long long time with this complaint and shed many tears but you can live with it. I had a rotten evening yesterday - couldn't breathe properly and was full of difficult to move sputum. However this morning I'm ok. Onward and upward!
Hi Sabrina, it sounds like your meditation is on the right track. Personally i can't take Az ... despite what they allege on the packet about 10% of people don't tolerate it well. Unfortunately I'm one of them. I say unfortunate because my mother takes it and it's revolutionised her life!
Montelukast can work very well to help with asthma type symptoms. If it's working then great. Works for me!
Looking at your medications makes me wonder if you have asthma as well? In any case, it looks like a good start.
If you are still getting infections, I wonder if you're getting the right antibiotics. That tendency to get reinfected quickly sounds like me. As does your little fellow. I wonder, has he just started with nursery / school?
The reason I ask is that there are some people (like me) who just can't deal with some particular sorts of gems called gram negative bacteria. Such people can't do what everyone else can which is to learn - in the first few years of life - how to deal with them. Pretty much everyone can deal with gram positive, but gram negative you learn about - especially when you meet lots of new people at school or nursery.
So right now your son is probably going through this. Which also means he's bringing them home. (I have 4 of ages 10 through 2, which helps explain my 8 years of chest infections and 4 years of diagnosed Bx!)
So if your recent infections have been haemophilus influenza or Moraxella catarhalis I suspect that that could be what is happening. So then my next question is, what antibis were you having? And did the doctor test your sputum first? Plain penicillin or amoxicillin? Problem there is that 90% of m catarhalis is resistant to penicillin so other bugs can "borrow" the resistance. And then when you stop the pills you will get reinfected immediately.
The good news is that Az is very good against this sort of bug, so I would be very hopeful for you!
Are you being prescribed antibiotics from the results of your sputum sample?? Some doctors seem to prescribe antibiotics willy nilly and it needs to be something that is suitable to get rid of that particular bug. I was also prescribed Azithromycin 3x week and found it to be fantastic haven't had an infection at all for at least 5 months. However my feet started to swell a couple of weeks ago and when I read the side effects this is one of the rarer ones. So I hve refrained from taking them and am waiting to see the consultant when I visit next week. It could have been a one off although it is not something that has happened before. I do hope I can start them again as my chest is getting rather tight
I have had the letter to say that my samples grew moraxella catarrhalis and haemophilis influenzae.
I have been given 10 days of doxycycline and they made me feel better , but once I stopped taking them. Back tonight chest etc.
they then started me on levofloxacin but they made me have very bad deep thoughts !!!! It was crazy! So today I've gone back and been given more doxycycline! I have also been told once I've finished these and I'm back from holiday I'll need to go and have 10 of IV anti bs ...... Which scares me. What if they can't ever get rid of this
Also, had my CT scan - they've been treating me for bronchieactisis for 5 months and my CT scan showed that I don't have it? So now I'm even more worried it's something else. Not felt this ill in all my life
I'm sorry to hear your chest is tight, I hope they see to you soon? It's so distressing when it gets like that.
I've had my symptoms since 2nd Feb 2015 . And it's worse than ever at the moment! I've just commented above with the anti bs I'm on and the infection they found .... But from my CT they are now saying I don't have bronch!? But I've been treated for it for the last few months. I'm very confused and still distressed as my chest is tight
Oh I've also been given ciprofloxcin today as well to try before going back to doxycycline... Have you ever had them?
Thank you so much for your kind words. I have updated on the discussion - what do you make of it all?
I feel really upset tonight - don't know where or what to do?? Could it be that this infection is just hard to shift ? But 5 months of a chest infection is that normal?
Hi Sabrina glad you have not got Bronchi and yes I have had both of these antibiotics in the past depending on what the results were of my sputum sample