Just joined!

[Liberty43]

I have bronchiectasis and rheumatoid arthritis therefore have several chest infections due to heamophilus influenzae which are difficult to treat. I am usually given amoxycillin or doxycycline but neither seems to help very much. I know l have to live with the bug and have been doing well until l moved and had to change my doctors who all knew me very well. I wonder if anyone has difficulty accessing stronger, better antibiotics than the ones l mention. My doctor is now aware that l need 2 weeks treatment but as soon as l complete the course l begin to feel ill again after a couple of weeks. Does anyone have the same problem as advice would be most welcome.

[PastMeBest]

Hi Liberty43 , just like to welcome you to our community. Not many people about this time of the morning but I am sure someone will be able to give you some advice later.

Regards. John

[MelAidJack]

Hi Maureen welcome to the group I am a 'newbie' but been made very welcome lots of lovely people in the group with loads of knowledge and advice as well as someone just to have a chat too. They also still have their sensce of humour which ie refreshing. Unfortunately I know nothing of medication (just starting out- diagnosed last Tuesday) but just wanted to say welcome to the group x

[Liberty43 in reply to MelAidJack]

Thank you. I have had lots of messages, which is encouraging.

[Caspiana]

Hello Maureen. Welcome! I have RA and Bronchiolitis Obliterans. I am glad you're here. 😊❤☀🎈🌷

[Helenamay]

I have bronchiectasis and I am on Rifinah and ethambutol. Best wishes X

[velvet55]

Hello Maureen

Welcome to the forum. 🌷🌷

You will get lots of help and support on here. Sorry l Can't answer your question but someone will be along who can.

Nice to "meet" you

Velvet x

[Brianjen]

Welcome Maureen someone will be along soon who will give you some answers just want to say welcome to the site x

[Hidden]

G'day Maureen

Greetings from "down Under". It is late afternoon on a chilly day here in Victoria (Australia).

Welcome to the "Family"

Will

[Hidden]

Hi Maureen, and welcome. There are quite a few of us on here with bronchiectasis. I have had it since I was three, sixty three years ago. Haemophilus inflenzae is the bug which you usually 'start off' with and actually it is comparatively easy to treat with the right antibiotics in the right doses. These are usually the ones which you have been having. As you get poorly almost as soon as you have finished them it may be that the haemophilus needs a course of an IV antibiotic to knock it on the head or that another bacteria, such as pseudomonas, has established itself This needs different antibiotics, such as ciproxin. The only way that you will know is for a sputum sample to be sent off by your GP. Do you have a good consultant who specialises in bronchiectasis? If not you need to find one because they tell your GP which drugs to give you. Also, do remember that antibiotics alone will not keep the bugs in your lungs down. You must empty them every day and stay active. This is very important. I hope that helps a bit. Please feel free to ask us any questions.

[Liberty43 in reply to Hidden]

Thanks so much for your help. I am aware of most of the things you say but have never had an introvenus injection. I do try to clear my lungs as often as possible. Do you have a mucus thinning drug? A big problem for me is that l take methotrexate and plaquinil for my RA which limit the antibiotics l can safely take. Seeing gp tomorrow and se what she can do. Think l should see a respiritory specialist. Have to go now as going to my daughter's to meet a workman doing some work for them. By the way l am 73 years old. Regards.

[Hidden in reply to Liberty43]

Hi Maureen, you really need a respiratory consultant who specialises in bronchiectasis. I'm afraid that most GPs are woefully ignorant about it. Even my lovely experienced GPs ask me and the hospital what to do! So I would get that set up if I was you. There are people on here who find mucus thinning drugs very useful but they don't work for me when I have a problem. If it gets really sticky ( usually when I get a virus) I use an aerosure medic flutter device which works by rechargeable battery. IV antibiotic is usually given as an in patient ( at home if you have a good health trust). It is usually three times each day for two weeks. Obviously the consultant has to recommend this and it is only done when no oral option is available. Bronchiectasis affects us all differently and so much of the treatment is a case of 'suck it and see'.

[diesel12]

Hi and welcome to the group. Pull up a chair and make yourself at home x

[inhaler1]

Welcome.

Do you have a flutter device to help clear sputum from chest? Also do you take daily Azithromycin between flare ups, sounds as though you need to speak to a specialist and also have a Respitory nurse to guide you,

The longer infection is left untreated the more damage its doing to your lungs.

Please ask for a second opinion as the state your health in your hands, and not all GP's are up to date on Lung conditions.

[Dedalus]

Can't help with your query Maureen but welcome to th d group

[Watfordgirl]

hi Maureen, it's good that you've found this site. There'll be lots of help and support from people with similar problems. It does sound as though you'd be helped by referral to a respiratory specialist.

Let us know how things go. Take care, Sue x

[patj]

I certainly do have the same problem. I have even had the HIB injection but that hasn't worked either. I still get a infection and every sputum sample comes back the same haemophilus influenza. I have a month of Doxycycline but it doesn't work well not for long. I wish I knew the answer, I'm seeing my COPD consultant Monday I will ask and see if he has any answers. Sorry I'm no help but at least now you know it's not only you that has this awful infection. Take care I will let you know what my consultant says as I say last time he recommended the injection but that hasn't worked.

[brooksju]

Hi Maureen,I have been the same as you,constant infections growing the same bacteria,I am now under a respiratory consultant and am currently on a coarse of intravenous antibiotics which has helped plus nebulisation of saline salt,seems to be working fingers crossed,I feel better than I have felt in months,I know Bronchietasis can't be cured but infections can be controlled with a daily antibiotic once the infection is cleared,hope you feel better soon,take care.

Jude

[Sparkywoo]

Hi and welcome. I have Bronchiectasis and the same problem with Heamophilus Influenza bug. Could never shift it properly until my consultant tried Azithromycin. This should not work according to what my sputum samples grow but it does. When it gets me I have a two week course of 500mg Amoxycillin followed by a six week course of 250mg Azithromycin (also take steroids in this mix as I have severe asthma too) but it works. Clears my chest fantastically 😀😀 and I truthfully felt better than I had in years. Coughing vastly reduced, not so tired. I hope you can get rid of it too x

[cofdrop-UK]

Hi Maureen and a very warm welcome to you.

I am a life long Bronchie and also colonised with HI, although other pests like strep p, moraxella etc pop up and try to be top dog sometimes. Also have inflammatory arthritis.

I empathise totally with your problem of completing a course of antibiotics and then coming down shortly with your resident pest.

It is unfortunately a very common complaint re GPs and you no doubt will already know you have to be your own advocate.

You might want to make sure you get referred to a respiratory consultant with a special interest in cf/non cf bronchiectasis.

Con should refer you to respiratory physio. As has been said this is the most important thing we can do for ourselves.

I can't take them but many people find prophelactic abs such as Azithromycin 1 three times a week is very helpful - they are good at reducing inflammation.

Many people with ncfbronchiectasis nebulise bronchodilators, hypertonic saline and antibiotics.

I apologise if you know any of this already. I will put up a couple of links which I hope you will find helpful. The European Respiratory Society may be updating guidelines in the future but these should be helpful for you.

Will send it separate 'cos ipad not playing.

BTW if you don't want your posts appearing on the web or other parts of HU then it is best to lock your posts and get rid of the tags before you post, although you can go in and do it now.

cx

[cofdrop-UK]

I don't think it was my ipad, I think it was me!

chss.org.uk/documents/2013/...

brit-thoracic.org.uk/docume...

Hope this helps.

Love cx

[evermore]

Hi Maureen, Still standing has given you an excellent answer. You must have a good consultant, you must clear your lungs, drink lots of water, exercise.

Have you seen

BronchiectasisRus

Very friendly site for those of us with bronchiectasis, has a wealth of information and many members with years of experience of managing the disease. You can ask anything and will get an answer, I would recommend that you join us.

[Jackm]

I use azithromycin every other day for maintanance and prednesone when needed.This has helped me out.The others didn!t work.

[Titchy52]

Liberty43 a belated welcome I'm having problems with my messages best wishes x

[B0xermad]

Hi Maureenallinson, I too have Bronchiectasis and recurring Haemophilus Influenzae regularly(going through it now actually) I have Azithromycin 3 times a week in tablet form and have been clear for 6 months prior to this week also had HIB jab and now its back again.Taking Amoxicillin 500mg 3 times a day then hopefully a clear sputum test.try clearance techniques flutter/Acapella to keep it away.