I'm a bit confused after visit to Consultant.

[bayleyray-uk]

I have been on a 4 month maintenance trial of Azithromycin antibiotic tablets 3 a week. Went to see the consultant in the week and came away a bit confused.

I had been gradually getting poorly over the past five weeks and my cough was getting very bad until I was coughing/retching so much I gave myself a small haemorrhage in my right eye, (this has happened before took my rescue pack then co-amoxiclav and pred. had it checked out at hospital all was ok, was told try not to cough to much!). Anyway this time I just kept on with the 3 Azithromycin weekly but as the days went on the coughing just got worse and as my eyesight cleared I would have another haemorrhage. In the end went to see my doc and he decided to up my Azithromycin to 1 a day until I saw the consultant, things calmed down quite a bit coughing eased no more trouble with my eyes.

Went to see the consultant he was not a happy bunny, told me to give a sputum sample stop talking the Azith. Take Co-amoxiclav 3 a day for two weeks and then go back to taking the Azithromycin 3 times a week until the next time I had a exchabation then go back on the Co-amoxiclav again and to try to not take any pred.

I must admit a was totally confused by this as I thought a maintenance medication was supposed to stop the need the rescue meds and came away feeling a bit lost and later had a bit of a tear.

I know several of you have maintenance medication so an help would be most appreciated.

Sue

[kimmy59]

Evening.

Everyone seem to be told different things. I was told not to stop taking the Azit if I had an infection and had to use my emergency medication, I've had that with my eye but mine just came on it wasn't because of coughing. Azit reduces the infection we get it doesn't stop them unfortunately.

Kim xx

[bayleyray-uk in reply to kimmy59]

Thanks Kim

I must admit I was probably more upset with myself after seeing the consultant as I don't usually come away from seeing him without understanding what he is asking me to do, if new medication is involved. I had hoped that being on maintenance antibs the infections would stop.

Thanks for your advice.

[Hidden]

Most antibiotics we take we will build up a resistance to ... Usually 12 weeks if Lucy before the rotated AS to infections the do cut down your infection rate but don't totally stop them

[bayleyray-uk in reply to Hidden]

Thanks D3NIS I must stop getting my hopes up that a new medicine regime will stop these pesky flare ups, so that I don't get disappointed and low when they help but don't stop them happening.

I'm not a pessimist and usually can look at the positive side of things guess I got over optimistic this time.

Thanks, Sue

[jenss]

Hi Sue, the azi will not necessarily stop all infections so if you feel like you are getting sick or coughing increases you need to see your dr or take rescue med as you may have an infection. You will learn how to recognise symptoms for a new infection or exacerbation. Also, with your coughing have you been shown how to huff-cough? Do you use any devices such as flutter or acapella to loosen mucous to make it easier to cough up? You can have a look at huff coughing (which is a gentle way of bringing up mucous without violent coughing which can do damage) on u-tube. Please discuss with your dr about getting a device (I personally think acapella is best as you can use it in any position including lying down): these devices are available on prescription in the UK. Another option is to get a referral to a respiratory physiotherapist: they will teach you the huff coughing method and also let you try the different devices so you can decide which one suits you best. Bringing. and coughing up mucous is very important in controlling and stopping infections as the mucous is where the bugs grow. It can be very frustrating getting the right advice, but please persist so that you will have an easier time. Best wishesxxx

[bayleyray-uk in reply to jenss]

Thanks Jenss,

Think I got a bit over optimistic about what the maintenance abs were supposed to do and hoped that they would stop the flare-ups.

I have been seen by a respiratory physiotherapist. Unfortunately have not been very successful with the huff coughing technique as the huff bit can bring on a coughing/retching attack (have the same problem when they try to monitor my lung capacity). I use a saline ampule with a nebuliser in the evening and if needed I can use an ampule in the daytime which does help to keep the mucus down a bit. Have not tried a the other mechanical devices yet and although we have been waiting for ages have not been able to get another appointment with the Resp. Physio. who is to show hubby to thump my back to help move the stuff. Not sure whether to go ahead and get a device and see if that helps.

I also see a resp. nurse on a regular basis as I am now on walking oxygen and she has managed to get me on the waiting list for the exercise classes but it's a long list.

I'll have to calm my optimism down a bit so that I don't crash and burn now and again.

Thank you again for your advice, it's nice to know we have somewhere we can have a chat without being told to pull yourself together.

Sue

[jenss in reply to bayleyray-uk]

Hi Sue, sounds like you have been getting some support from the drs which is great. If I was you I would ask my GP or the nurse for a prescription for the acapella. I think it will help you (and maybe will it easier for your husband once he has learned from the physio). You could also check out this website you can make a positive pressure device to loosen mucous using a bottle and tubing (or straws if you have no tubing).

cincinnatichildrens.org/hea... But Acapella would be better as easier to use and portable. Good luck and keep in touch. Cheers, xxx

[bayleyray-uk in reply to jenss]

Hi Jenss,

I'm not sure a homemade pressure device would work for me as hubby and me spend 3 days a week looking after my grandkids and although they are brilliant with not touching my portable nebuliser and oxygen, I think they would try to get me to make them a homemade devices so they could play drs with nanny.

So I think I will get a acapella and hopefully it will shift some more of this awful gunk.

Sue

[helingmic in reply to bayleyray-uk]

Sue, contact the pulmonary nurse as soon as possible and have a talk with her. Pulm. Nurses are wonderful poepl, very down to earth. Not only do they empathise or sympathise with the patient, but give plenty of advice and inded referral to physio. Tel her physio hasn't come yet.

In my opinion, take this co-Amoxyclav as prescribed, but it may take longer than 2 weeks. if possible ask your doc for more of it and say your infection hasn't calmed down.

You stand up for yourself sue because you need that help and the doc is the only one to be able to prescribe the medicine.

2 Weeks ago, I had a streaming cold; it has turned to infection. I take now my clarithromycin (typical bank holiday stuff )

I hope you get the help you need, Sue. Mic

[bayleyray-uk in reply to helingmic]

Thanks Heligmic,

I have a follow up appointment with my resp. nurse next month so I will get her to chase them again, if that does not work I will get my Dr to write a letter to the consultant and get an appointment with the resp. physio that way.

I realise now that I was being rather optimistic about what the maintenance abs were supposed to do and was looking forward to having some time off from the constant flare ups, hey ho these lung diseases certainly know how to turn around and bit you on the botty now and again.

Cheers, Sue

[helingmic in reply to bayleyray-uk]

Ah Sue, I usually phone my respiratory nurse if I need her. She is very responsive and either comes to see me, or arranges a prompter appointment. Pherhaps you could phone her on tuesday to speed things up.

All the best, Mic

[bayleyray-uk in reply to helingmic]

Not sure that they work the same way here at Maidstone you only seems to get a certain amount of sessions and then you are signed off, unless the consultant decides that you need more sessions then he will inform the serviced, this is for both the resp physio and the resp nurse. But I shall certainly ask when I see the resp nurse in June. I do know that both services are snowed under at the moment.

Cheers, Sue

[Hidden]

Your consultant was probably annoyed at your doc telling you to take the azithromycin every day but you shouldnt have gone 5 weeks feeling ill its hard enough as it is without putting yourself through that honey

When we take antibiotics for an infection we have to stop taking the azithromycin until the course is finished then go back on it 3 days a week. Its not easy being us we are told different things by different people but if i had to chose between what my doctor says or what my consultant says my doctor would lose every time.

Do you always send in a sputum sample before you take your emergency pack its important you do because i dont always have an infection even though i feel i do

and have you had a sensitivity test done to see which antibiotics you respond to best

[bayleyray-uk in reply to Hidden]

Hi Mandy 1365,

It was more than likely I did not ask the consultant when first prescribed the maintenance antibs about what would happen if I have a infection, because I optimistically thought the new antibs would stop the infections (yep a bit naïve of me). So when I started to become unwell again I thought it would clear up (error no 1) so left it longer than I would before visiting the drs or starting my rescue pack (error no 2).

We live and learn and this time I have learnt the hard way, keep your rescue pack close to hand.

I don't usually send in a sputum sample in every time I have a infection only if the rescue pack does not seem to be helping and I have to see the dr for further supplies. I have a very good relationship with my doc and normally with my consultant, things just went awry this time.

Sue

[Hidden]

What is this rescue pack you're all referring to? Is it UK thing? I'm in Australia.

[Hidden in reply to Hidden]

Its just the antibiotics we all keep at home incase

[monkey65]

Hi Sue. The azi is a great drug but it doesn't work on all infections (like any antibiotic). So it just may be that this particular infection needed a different one. On the whole, azi will reduce the number of exacerbations but not get rid of them altogether.. Hope you are better soon.

[bayleyray-uk in reply to monkey65]

Thanks Monkey65,

I realise that now, was being optimistic about what it would do. Starting to get better at least the dreaded cough has dried up a bit.

Take care, Sue

[bayleyray-uk]

Hi Monkey65,

Thanks for your reply. I think I was being a bit over optimistic about what the azi would do for me, will remember to ask a few more questions next time.

Sue

[sassy59]

It does all seem different for everyone bayleyray so don't worry too much. Pete takes Azith like you 3 times a week but with a chest infection he has to take Clarithramycin. He doesn't get too many infections but if he gets too used to the Azith he goes onto Doxycyclin for say a year or two and then back to Azith. It just varies.

If you are at all unsure then get your doctor to explain it all to you if possible. Pete was told that Azith are a slow release antibiotic so you should not need to take one every day.

Hope everything works out well for you and you feel better soon. xxx

[bayleyray-uk in reply to sassy59]

Thanks Sassy59, to optimistic about what the maintenance abs should do. Though I would have a bit of time off constant flare ups, oh well back to the drawing board.

Sue

[bayleyray-uk]

Thanks Pat and Graham,

I have read previous posts where you have explained about the vitamins Pat is taking and I will look into trying them if the other medications I am taking allows me to take vitamins.

If the consultant wants me to try different medication you can be sure that before I leave the consulting room I will know all the in's and out's before jumping to conclusions.

I hope you are both well.

Sue

[bayleyray-uk]

Dear Pat and Graham,

Thanks for that info. I will certainly check as some of the medication I take is not to do with the lung disease and I know I read on one of my instruction leaflets about vitamin tablets. I have so many reply's to my original post that I have just about finished replying to everybody.

So now I can take some time to check out the helpful advice I have received - to be honest I'm a bit overwhelmed by how many of you have posted offering support and good wishes I have received, this has been a wonderful boost to my moral or the past few days.

Thanks, Sue