Hi all I have copd and aspergillosis. I have been on a high dose of itraconazole tablets for 3 years my consultant has decided to stop the drug as he feels it is not beneficial to me any more. My concern is this is a killer bug and I have not been offered an alternative. Just to clarify my lung damage is extensive. Has anyone else had experience of this would appreciate any feedback thank you.

14 Replies

  • Hi Linda no experience personally but just want to send good wishes your way. Xxxx

  • Thank you x

  • Welcome Linda. Not my experience or condition. But there will be people here who can offer advice and support.

    All the best

    K x

  • Thank you

  • Hi Linda,

    I have asthma, bronchiectasis and aspergillosis but in the milder form of SAFS. I have had itraconazole in the past but had to stop as it was causing my liver function tests to go extremely high. I now take nebulised amphoteracin twice daily, it is a pain but has greatly improved my life. I am unable to tolerate other oral medication for this condition as I have gall stones.

    I don't know whereabouts you live but I am under the care of Professor Denning at the National Aspergillus centre at Wythenshawe Hospital, Manchester. Patients come to the centre from all over the country and beyond! It should be relatively easy for you to get referred there if you wish.

    Good luck xx

  • Thank you I am in Yorkshire. Sounds promising. I will ask my consultant to refer me. Thank you so much.

  • Sorry Linda, no. No experience. But I hope things look up soon xx

  • Thank you.

  • Hi Linda. What type of aspergillosis have you got? Is it invasive?

  • Yes it's invasive unfortunately. The consultant cannot tell whether it has done any good or not being on intraconazole for 3 years. But he decided to stop the drug because of the side effects. My recent x rays show extensive lung damage. And my stats are down to 88/89. I feel exhausted and sleep a lot which is so frustrating. My worry is he did not offer an alternative drug!

  • Oh dear, poor you. I'm surprised your consultant hasn't contacted the Wythenshawe for advice. Definitely get a referral there - your gp might be able to refer you.

  • It was my first visit referred to a new hospital as my old consultant left the hospital I was attending and he was never replaced. As he is my new consultant I was hoping he would have a new perspective on my condition fingers crossed he my well refer me but I live in Yorkshire so he may not. Just trying to keep positive. My gp is useless and refers to me when he doesn't know. 😊

  • The unit at Wythenshawe is generally regarded as THE place to go for invasive aspergillosis and sees patients from all over the UK, I believe, so you must go there! I feel sure you won't have a problem but anyway don't take no for an answer. It was the first unit in the world to specialise in aspergillosis, in fact as far as I know it's still the only one. I expect you're familiar with the website they founded I don't have an invasive type so am managed at RBH in London - they know enough to keep me well!

  • Hi thank you I will certainly push to get the referral. I appreciate all your help. May even I can move forward now. Thank you so much. Ps I didn't know about the website. Will try it now. X

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