HiI have bronchiectasis and pseudomonas colonisation. I have been on Colomycin for 10 years but have now seeked a second opinion for my condition (maybe a bit late but I took Littlepom's advice). They are looking to change me to Gentamicin instead.
At present I am on IV antibiotics for 14 days. Fifth course this year. Cannot take any tablets for it as allergic reactions so straight to the big guns.
I was wondering if there is anyone that is on Gentamicin and if it keeps Mr Monus in check?
If this doesn't help it will be back to the Colomycin but its worth a try.
Thank you.
Linda
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LMEI
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Hello LME I nebulised gentamycin in 1999 but I quickly became extremely breathless.(bronchospasm) It is an old "raw' drug but very effective and some docs love it. The best nebulised antibiotic for me was ceftazidime which I nebbed for 15 years. It kept the pseudo down. There is also meropenem, tobramycin which you can nebulise and a couple of others. Make sure that they give you saline to make up the drug instead of water. It is far kinder to the lungs. Don't forget to do your lung clearance because this will help more than anything. I hope that helped.
Thank you Littlepom. I have made a note of the other drugs you have said about. Not sure about Gentamicin, as I understand it can cause hearing loss and I love to listen to my music. I am clearing my lungs 3 to 4 times a day, ACB.I hope you are feeling better after your lung collapses.
I really interested in your post and to see how you get on because I’m in the same position as you except the bug I’m battling is Proteus Mirablis which is a really unusual bug to have colonize your lungs but it’s causing me all sorts of trouble. I’ve have 6 positive tests for this since January despite 4 weeks of IV ceftazadime and at least 4 lots of orals including ones the microbiologist says are active against it when grown in the lab. Trouble is my body doesn’t respond the same as the sample grown in the lab.
I just starting week 2 of IV meropenum and after that the plan is to switch nebbed colistin to gentamicin the same as you. I’m nervous about it due to the ototoxicity issues which my consultant has warned me about.
I too should like to know if others have experience with nebbed gentamicin especially with severe asthma as well as Bronchiectasis. Thanks so much for your post as I can see how you get on as well.
I finish my course of IV next Thursday and go back to do a trial of Gentamicin. It scares me a bit as it is unlicensed and we need to go back to the Hospital to get the drug, and not your GP surgery.
It's always weighing up the pros and cons. If it helps keeping Mr Monus slapped down and less IV's that would be good, but if I lose my hearing and I can't listen to my music I'm not sure its worth the risk. My hearings not so great anyway.
I will let you know how I get on.
I hope you start to feel better. I always thought I had a good time of year but that seems to have gone out of the window! As my daughter keeps telling me "it is what it is". Just keep getting back up when it knocks you down.
Thanks for this. My nebbed gentamicin trial is taking place next Thursday straight after my line comes out. I’ve been advised I am having an appointment for a base line hearing test as well which will be retested after a while. So perhaps make sure you are having a hearing test before you start as that’s what I’ve been told I need to have.
The drug is an IV injection format repurposed: One thing to watch out for with gentamicin is there are a range of different preps and some very obviously cause more bronchospasm than others (we spotted this when patients told us we were fine then the pharmacy gave us a different brand and it didn't suit. This is because the drug is prescribed generically so they are unaware that best to stick to low sulphite preservative versions (sulphites are known to cause bronchospasm)
Our letters now say please stick to brand X and Y
As littlepom mentions there are other options at some centres and worth asking if not suiting gentamicin
some centres give salbutamol prior to nebulised drugs
I haven't seen deafness as an issue- I think thats much more likely when IV gentamicin is used
Hi I have been nebulisng this for 6 weeks due to the dreaded pseudomonas that they found . It is a hard med but it has worked for me and so when I get a reappearance we tend to use this as oral antibiotics can't be used due to stomach issues .
I do tend to get hoarse after a few weeks but it's better to tough it out I feel as it helps in the long run.
But yes there are other alternatives if you feel its too harsh.
Can I ask are you on this long term or only when you get Mr Monus?They are looking to replace this for the Colomycin which I have been on for 10 years.
No not long term but have been using it for about 4 months on and off .No problems with hearing I only had to take meds for infection in my mouth from nebulisng. And hoarse voice. But it's a lot kinder than oral antibiotics that irritate my stomach terribly.
I do hope things work out for you it's so difficult finding the right meds . But I just feel No med is free from side effects it just depends how bad they are .
Why would u go off Colistin if it’s working..I’m also colonized and Colistin is a life savour..you don’t want to risk staying off a drug for too long..the drug might not work when you try to go back on it…
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