Hi everyone, I am 31 and was diagnosed with bronchiectasis in august 2012. It followed a 2 year period of having chest infections that wouldn't quite go away. At first they thought it was asthma but after trying inhalers and peak flow tests it showed that was not the case. I then had spirometery tests done and a ct scan which showed bronchiectasis. I saw the consultant once and was discharged. I then proceeded to get chest infections again and was sent back to the consultant (I have a different consultant this time round). I saw him at Christmas and he recommended physio and to see an ENT specialist. Since the middle of february I have had 4 chest infections, all of which have been Haemophilus Influenzae. I get an infection, have 2 weeks of amoxicillin (500 3 x a day) and then about 12 days after finishing the antibiotics I start to go down hill again. The first 3 infections my syptoms stopped after a week or so, i stopped coughing and no mucus was coming up at all. The most recent infection (still H.I) has been different. I had a really sore throat and very runny nose (not had this before with previous infections) to begin with then the thick sticky green mucus started (apologies for the detail!). By then end of 2 weeks of amoxicillin the colour had changed to a light yellow but it was still there, 3- 4 times a day where as previously the mucus would stop completely and only come back 12 days later when I went down hill again. So now i'm about 10 days post amoxicillin and it's starting all over again, mucus is now more green and thicker and when I cough I have an unpleasant taste. I handed in a sputum sample yesterday and I doubt i'll hear back until after the bank holiday.
I just really do not know what to do now. I saw the ENT specialist who is doing a scan of my sinuses but he didn't think there was a problem with my nose/throat but would do the scan just to rule that out. I don't see my consultant until June and I am really worried about what is going on and if my bronchiectasis is getting worse as 4 infections (possibly 5 if I have one now) since february isn't very good. I worry about what damage is being done. I am assuming that the results of the sputum sample will come back with H.I again. I had a telephone conversation with my consultant and he suggested a different antibiotic if it came back. I just wanted to know if anyone else suffers with H.I and how you get rid of it? In terms of my bronchiectasis I do daily physio and that's it. I take antibiotics when I get an infection only. I really need some help as it just doesn't seem to go away, it seems that the amoxicillin just isn't strong enough to get rid of it for good. I am just so desperate to feel well again, I have 2 children 7 and 5 and I just want to get on top of this illness. I've checked out BRUS and most people seem to get to a point where they are fairly stable with this condition but i'm just not getting there and I'm really worried any help is gratefully recieved. Thank you and sorry for the long post!
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hollybobs
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Its possible you need a different antibiotic, or you need a stronger dose. I my self was on 3 gram sachets of amoxicillin twice a day ( a very strong dose) for several years until that no longer worked either...you may need a course of steroids with your ab's
I have had brochiectasis for decades since a baby...don't think I ever had HI though. I am sure someone who has had HI will come on soon and advise which ab worked for them.
But it feels to me like amoxi is not working for you anymore, so you do need to change to another ab in my opinion. Its the cheapest ab and most people are on that first...it did work for many many years for me ( I was lucky in that respect) but there are better ab's out there...good luck finding the one that works best for you
Hopefully the sputum sample will help to identify the correct antibiotic for you. Sounds like amoxicillin isn't getting to the infection. If the mucus is thick mucodyne might help you to bring it up. If its thick it might be lying in your lungs and causing the repeated infections.
Snap - I have had bronchiectasis since babyhood and although I have had haemophilus infections in the past, for the last 2 and a half years I have been colonised with it.
I too am a member of BRUS and believe me there are lots of us who are not at the point of being stable - we all have our bad times. Many have had long runs of HI which then appears to have cleared up, but mine seem to have taken up squatters rights and will not take heed of any eviction notice.
I would just like to say I was very unimpressed with your first consultant - you should be monitored by a consultant with bronchiectasis. At least you have got rid of him. Hurrah!
Your new one has done the right thing in referring you to a respiratory physio and indeed to ENT. I would just add has your consultant a special interest in cf/bronchiectasis - check him/her out with your local hospital or Dr. foster. Believe me it does make a difference. Putting the HI to one side for a mo, I would have thought he/she might have discussed giving you a sweat test to eliminate cf. I would have also thought con would have discussed a medication plan. Are you on any inhalers? Did he discuss any mucus thinners or whether nebulising saline either 0.9% (same as amount in body tissue) or hypertonic saline 3%, 6% or 7% which would help to draw the fluid into your lungs whilst doing physio. Lastly I wondered if he mentioned taking an antibiotic (not as a treatment but as a prophylactic) i.e. many folks with lung issues take say Azithromycin 1 3 times a week or one a day.
With regard to the HI. I can so empathise with the fact you are completing one course (which the lab has shown the HI to be sensitive to and it appearing to help and once the course is completed back it comes. It is almost like it is duping us and hiding in scar tissue ready to kick off again. I have, as I say, had over 2 years of this now. You will probably be in a much better position than I am, as I am either allergic or intolerant to lots of drugs, many of them being antibiotics. I think if I could take Azith as a prophylactic and Cipro as a treatment it may have helped.
I was talking to one of the cf consultants last week and lab results are sometimes not an exact science in that something may work at killing off the bugs in a petri dish but it does not always follow in the lungs. However generally it is a very good helpful guide. There are many other drugs they can try for you.
If your sample was taken in Wednesday (and it wasn't labelled cf protocol) then I reckon it's worth a try ringing up tomorrow for results. It is not the receptionists remit to tell you unless there is no action needed, but stick out and ask if it has cultured HI and ask what it is sensitive to. If she is arsy (and that's ok 'cos it's not really her job) ask to speak to one of the docs as you will need medication before the weekend. (sorry just throwing ideas around - not trying to be bossy).
Personally I have tried nebbed colomycin. Now lots of folks are on this and it works well for them (time consuming, especially if you have 2 kids.) However because I am such a weirdo with drugs I had a severe reaction about 10 days in which put me in hospital, but as I say most folks are fine.
My consultant has been working behind the scenes and talking to the Microbiologists again and they want me to try nebulising Tobramycin. I have agreed but not until after my hols, which they thought was reasonable. He has also made arrangements for me to see an immunologist, whom I see tomorrow morning. The last immunologist was keen on the HIB vac but I understand this one is not so keen. As I understand it there are two types - type B is the one which makes kids very ill with meningitis and the respiratory HI which is non type and I think the vac is type B. I am unhappy about it containing pertussis - so lots to discuss tomorrow.
Hopefully between us we can come up with something - I am ever hopeful as you well know it is so draining. Incidentally my last course of abs was completed last Sunday and today the HI reared it's ugly head again. Felt ill spiking temp. Foul tasting horrid gunk. Now hows that for a lovely birthday present. Still managed to go out for birthday treats but yes well and truly peed off - but ever hopeful.
I feel with good management there will be a good outcome for you with many more medication options. It's down to you to make sure you have a good consultant and also to 'nicely' fight your own corner and hopefully you can all work as a team and kick this arsy HI into touch.
Thank you sweetheart - what a nice thing to say. I reckon you must be pretty clued up, not only having bronch for such a long time but being on those horrid high dose sachet amox. Yuk!
I have Bronchiectasis too, have they given you an Acapella or a Flutter Device to help you do chest clearance which is so important to do to prevent infections getting a hold. If not you can buy them, Henleys medical for an Acapella Device, or just key in Flutter they are well worth buying.
No I haven't been given any of those. I got myself a salt pipe although not entirely sure that does much and the physiotherapist told we how to do bubble pep with a bottle of water but that's about it. I saw my gp friday night though, he said after the 3rd time of amoxicillin I should have moved on to something else as it's clearly not doing much. So i'm now on 2 weeks worth of Cefixme (?). I take 200mg morning and evening. Hopefully that'll get rid of H.I x
So I saw the GP last friday. He said that after my 3rd lot of amoxicillin I should have been moved on to something else. He has put me on 200mg of cefixime twice a day for two weeks. I asked about going to the RBH and he said that it was down to my current consultant to make that referral. He said that GP's can't really step on their toes and that it should come from the hospital. The problem is I don't see the consultant until 17th June. We spoke to consultants secretary yesterday who was taken aback when we asked if he would refer me on to the RBH. She went away for ages then came back and said what were we hoping to gain out of moving to which we just said that it was a specialist hospital, leaders in their field with someone who was specialised in my condition. She said that the consultant would review my notes and either she would let me know before my appointment or it would be something we discussed at my next appointment. From my point of view i'm worried that waiting 5-6 weeks will be more harmful to me but I just don't seem to be in a position to do any more. This is so frustrating and 6 days in to my antibiotics things don't really seem to be changing. I still bring stuff up about 4 -5 times a day and although it's changing colour it's still really sticky and quite lumpy which i'd have thought would have got better now. I just don't know what to do x
I have exactly the same symptoms as you and am as frustrated as you too although I do not have children to look after, so it must be very challenging! I am trying to find a solution too and, if and when i do,i will be sure to broadcast it as loudly as possible.
At the moment, all I can offer is empathy and know that all together we can find a solution.
Hi holybobs. This is my first post on here but couldn't believe how similar your situation is. I am 32 and have never come across someone of a similar age with bronchiectasis! I also seem to be colonised with HI. I have had it since October with one sample not showing it. I have tried every antibiotics they say is sensitive to HI and don't know what is the next option. Have you heard anything further? I have a brilliant consultant and use a saline neb and acapella twice daily x
Hi all! I've been diagnosed with Bronchiectasis for several years now and I'm on my 2nd course of antibiotics and steroids. Don't see my consultant till June but feel I'm getting worse. It's completely flooring me and with 2 kids I need to be well lol. I'm 44 x
Totally understand the problems with dealing with bronchiectasis with kids jr1972. I started using my nebuliser when my daughter was 2 months old! Some days I would love to sit in front of the tv all day when I have an infection!
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any help is gratefully recieved. Thank you and sorry for the long post!
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