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Funding for nebulised antibiotic Tobramycin?

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Columbine17
Columbine17

I realise this is rather a specialist topic but would like to hear the experience of anyone on nebulised antibiotics.  I have had bronchectasis for 45 years and over 10 years ago I became colonised with the bug Pseudomas Aeruginosa.  I was prescribed a twice daily nebulised antibiotic called Colymicin and this enabled me to continue working in a senior management role for a further 5 years.  I had to retire on ill health grounds 5 years ago.  It takes me 5 hours a day of physiotherapy and medicine administration to keep me out of hospital and this has a significant impact on my life.  My consultant now wants me to try alternating Colymicin with Tobramycin to slow my declining lung function and also to reduce my reliance on steroids (which have given me painful legs and very thin skin).  However, she is unable to get funding as it will cost approximately £10k per annum.  Is anyone else is in this position? 

0 likes, 7 replies

7 Replies

  • susan71068
    susan71068 Columbine17

    Posted

    Hello Columbine17. I'm sorry to hear of your plight. My husband had the same as you plus TB and RA. He was prescribed nebulised Colomycin, he passed the challenge test as he seemed to tolerate it. After 2 weeks of using he had to stop as his chest as was very tight, tighter than usual when he was using the nebulised Colomycin. It's sad to know you can't get funding. He was given Tobramycin IV on many occasions along with every other Antibiotic. I wish you all the very best.
    • Columbine17
      Columbine17 susan71068

      Posted

      Thank you Susan,

      Unfortunately I cannot have the Tobramycin IV as I have hearing problems and it is known to make these worse, hence the idea of nebulised Tobi.

      I am sorry your husband did not tolerate it as I am sure it has helped me.  I did hear that using water instead of saline to mix the powder can help with tightness. 

      I hope the IVs are working for him - it's a rubbish situation to be in...

      All the best to you both.

    • susan71068
      susan71068 Columbine17

      Posted

      Yes Columbine 17, truly a rubbish situation. I'm sorry and you weren't to know but my dear husband of 44 wonderful years died a few months ago. I wish you well. Xx
  • elizabeth49611
    elizabeth49611 Columbine17

    Posted

    Columbine17

    I live in the states and have not heard of taking an antibiotic by way of the nebulizer.  I also haven't heard of Colomycin orTobramycin.

    I'm always surprised that treatment in the UK and treatment in the states can be so different. The medical field must not communicate internationally very well.

    Ho[pefully, you will get good responses from this website, Beth

    • Columbine17
      Columbine17 elizabeth49611

      Posted

      Thank you Elizabeth,

      They are used for CF patients mainly but as they are known to work against Pseudomonas, my consultant tried Colymicin on me and it has kept me out of hospital.

      Not only is treatment inconsistant between the US and UK, it seems to be inconsistent between different parts of the UK - or so it seems to me!

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