Bronchiectasis with colonised psudamonas. I am new on here, and having trouble with medication given to me through a nebuliser. Been tried on Colomicin twice, but causing breathing problems, also given tobramycin and gentamicin, same problem. Consultant says he can't give me anything else, just have me in hospital when I have exacerbation. I have had oral cyprofloxacin, but my doctors seem reluctant to give me it , I can't take azithramycin, or a lot of other drugs, I must be sensitive to them. Trouble is I think everyone had given up on me. I see a Bronchiectasis , non cystic fibrosis nurse at the hospital, but even they don't seem to be interested anymore. At the moment all I am on is nebulised ventolin, cos my breathing has been so bad. Can anyone give me any advise. Thank you.
Bronchiectasis with colonised psudamo... - Lung Conditions C...
Bronchiectasis with colonised psudamonas.
I have been having nebulised ceftazidime for about 15 years. The consultant can give you this and the hospital deliver it. I had big problems with gentamycin and tobramycin but have been fine and mostly stable on ceftazidime. At the moment I am giving colomycin a go again ( breathing probs last time) to give the ceft a rest.
I also have been taking cipro 750mg bd for 14 days when I have an exacerbation since 1986. I know that much is written about tendon and other problems but I have never had any. I take one antihystamine every day when taking it to prevent a rash reaction. The doctors may be reluctant to give you cipro because of your problems with other drugs and the consultant may not know that they can take the decision to supply ceftazidime. There are often manufacturing problems with it which is why it has to come from a hospital pharmacy.
Thank you for your advice but I'm afraid they don't seem to do cefazidime nebulised at my Bronchiectasis clinic. They only do Colomicin, tobramycin, and gentamicin, and none of them agree with me. I saw the chest consultant this week, and all he could suggest was if I get that bad, ring his secretary, or the Cistic team, and ask them to arrange for me to go in hospital and have a course of IV. I feel I'm at a loss now. I'm not on any antibiotics at the moment. Thanks again for your help.
Well if you feel poorly enough I would go and get the IV. They should give you 14 days. Try to talk to your actual consultant. They can prescribe ceftazidime but usually don’t think about it. It has to be done ‘off licence’ or something like that. No guarantees that you won’t react to it though
Snap! It is a very difficult situation when we are ‘complex’/‘difficult to treat’.
On the one hand you seem to be going to a good bronciectasis service if they actually have that rare breed a specialist bronchiectasis nurse, but for some reason they don’t give the facility of those who are able and willing to do their own IVs at home, but have you admitted to hospital!
There are other avenues re as LP has mentioned nebulised Cephtazadime. As far as aiding lung clearance, as you are nebulising ventolin, maybe nebulising hypertonic saline would be of benefit to you. You would need to be assessed at the hospital, so it might be worth mentioning to your con.
I am intolerant to many medications, not all lung related and I have IBS and SIBO which makes matters worse. I was fine at the assessment for neb Colomycin but the breathlessness built up until my GP sent for an amulance because I could not string a sentence together. Nebbed Tobramycin caused increased breathlessness but to a lesser extent, but enough for me to use my Terbutaline inhaler numberous times just to do a small job. Cipro effects my tendons. I am also intolerant to most of the mycins and Cepthtazadime, either oral or by IV.
If I have IVs it is usually Meroperin and I do them at home. It’s a win win as you don’t have to wait for a community team to come in, you administer them at the correct intervals and you keep out of hospital, apart from the first 2 doses. A cf nurse comes to my home half way through to weigh me, take bloods, sputum sample, ask about any problems and has a cuppa and a chat. You can ring the cf nurses or the ward at any time. You also have 2 epipens but the nurses said they have never had anyone need to use them. When course is completed you go back to the cf ward and have the longline taken out, usual spiromtrey and stuff and are seen by a con.
You can always ask them outright if they have given up on you! We have 2 consultants within our bronchiectasis service and I have asked them both if they see me as a challenge or have they given up on me. It was a bit tongue in cheek as they are both not averse to a tease. One said ‘a bit of both’ and the other said ‘I never give up on anybody’.
You do need to be your own advocate, even when in the best of places with the best medics.
Good luck
Cx
Hello, and thank you for your advice. The thing is, I do see Cistic fibrosis nurses, but they have told me that they can't give me anything else. They only do Colomicin, tobramycin, and gentamicin, which don't agree with me. They Don't do IV at home. Also I have had nebusal salt. My consultant is long in the tooth, and doesn't really come out with any suggestions. I feel like no one is listening anymore.
I really do empathise with you Gard. It is an unenviable position to be in and I am in the same position with you, except I generally don’t feel abandoned by my consultants. Is your consultant near to retirement? I ask because I was most unhappy with my last consultant and wanted to change to the one I have now. The first one sadly passed away and my GP said ‘lets wait and see who you get and if it’s not the one you want we will change then’. Luckily it turne out to be the one I wanted. That still doesn’t change the fact that I am ‘difficult to treat’ but it makes it easier to deal with.
On the upside, after reading stuff on various meds, I am sometimes glad that I have shown to be intolerant to them early doors. I sometimes think my bodies reaction to some meds is that it is rebelling after a lifetime of fighting infections and medications and now more medications being thrown at it. I can almost hear it saying ‘ENOUGH’.
Sorry I haven’t really been of any help really, as if I knew the answer I would do it myself.
I hope you and your team find something to help you.
Love cx
Thank you cofdrop-UK
I so agree with you on the meds. I have refused IV a few times in the last 2 years and with the help of cipro ( which is not supposed to work on me) and the ongoing ceft managed to avoid it. I have only ever had IV three times and I seem to get by. I don’t know why. I agreed to try the colomycin again to give the ceft a rest but after two weeks I am suspicious that it is causing problems already. As the hospital have not sent the follow up three months yet I have stopped the ventolin and saline which I was nebbing with the ceft and the colomycin and I am going to see how it goes. My dread is going down the slope and ending up really needing IV and being stuck between the QE which is miles away and my local hospital who agreed to give me IV to take home but as I haven’t needed them I have lost touch and the consultant there who was cooperating has retired. It’s such a pain.
It certainly is. I think that’s the one problem with the dilema of going to a hospital which is a distance but which is a centre of excellence, which works fine as they usually keep someone on more of an even keel. I have seen it be problematic when in an acute situation folks are taken to the local hospital.
I hope this settles and works well for you, but I know you have the experiance to sort it out if it doesn’t. Just don’t leave it too long if it affects you adversley as it can get to a point when unwell we get to a point where we need someone else to fight our corner.
Good luck. Let us know how you get on.
Cx
Thanks, I will be keeping an eye and making plans
Whereabouts are you based? Would you be able to get a referral to a better clinic? It does sound a bit like they’re not specialised enough. Chest clinics are all well and good but some people need more specific services
I am in the same situation as you I'm afraid. I have a really bad allergic reaction as I have full blown rash all over my body and breathing difficulties. My hospital consultant only does ivs for one where nurses come to your home twice a day but I reacted very badly to that so I have to go in hospital to stay for them and I'm OK for that one up to now. I react badly to nebulized colomycin and any others. I'm OK with cipro but it doesn't help much. I try to keep my lungs clear and help myself a much as I can. Best wishes to you. Majt
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