Aspergillosis: Hi all I have copd and... - Lung Conditions C...

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Aspergillosis

Linda8p profile image
11 Replies

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.

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Linda8p
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11 Replies
sassy59 profile image
sassy59

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

Linda8p profile image
Linda8p in reply tosassy59

Thank you x

Katinka46 profile image
Katinka46

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

All the best

K x

Linda8p profile image
Linda8p in reply toKatinka46

Thank you

Northern-soul profile image
Northern-soul

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

Linda8p profile image
Linda8p in reply toNorthern-soul

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

Symes profile image
Symes

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

Linda8p profile image
Linda8p

Thank you.

Linda8p profile image
Linda8p

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!

Linda8p profile image
Linda8p

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. 😊

Linda8p profile image
Linda8p

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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