Panicking somewhat

[ChrisLizB]

Hi. I have been taking Itraconazole for about 6 months for ABPA. I am struggling with anxiety about the possible side effects. Several times I have had to come home early because of light headedness, pins and needles and fear of fainting. Today I was bitterly cold in both arms and legs and as the circulation improved back home in bed with a hot drink and hot water bottle have struggled with severe pins and needles. So want to give up the medication, but do want the lungs not to deteriorate further. Any wisdom appreciated. I was first diagnosed about 9 years ago, and then symptom free for 5 years... Back under consultation care for a year. I have no other conditions, which my consultant says is rare. No underlying asthma or anything

[Hidden]

Hi there. I'm on my 5th month of itraconazole, having had several years on them about 5yrs back, then remission, then another flare-up (I do have other lung problems, bronchiectasis & severe asthma.) I'm aware of the side effects, but try not to think about them. I'm on so many different drugs to control my lung condition, if I worried I'd never stop. My lungs come first, because if they deteriorate further it would be a real threat to my health.

Those symptoms you mention - pins & needles etc - could just as easily be caused by anxiety, don't you think? I've had episodes of anxiety & panic attacks in the past, there's nothing worse, it's very frightening. Have you sought help from your GP? Luckily I'm coping at the moment, though I'm currently I'm taking 50mg prednisone a day for a bad asthma flare, which is a bit scary! But I'm trying to take the long view, ie these drugs are necessary at the moment to improve my breathing, but soon I can start reducing them.

I've been told my IgE levels for aspergillus are almost back to normal now, so I can stop the itraconazole in one more month. What are your levels looking like?

[ChrisLizB in reply to Hidden]

Waiting for the results of bloods taken last week.... Plan to continue with a CT scan in Oct which will be 12months on from correct itraconazole levels registering.

Could be panic reaction, I am a catastrophiser, but wouldn't want not to be checked out if it needs it. Consultant didn't comment on my worrying at my last appointment, so probably just need to rest and recover from whatever viral thing is causing me such anxiety. But it appears to circle round and round, feel better for ten days and then starts up again

[ChrisLizB in reply to ChrisLizB]

And thanks for replying...

[Hidden in reply to ChrisLizB]

I honestly wouldn't worry. When I had to go back on them I specifically asked about serious side effects (I was concerned because, like you, I'd already taken them for several years beforehand.) My consultant, who is at the Brompton & involved in aspergillus research, said the reverse is the case, ie as I'd already taken itraconazole for a long time with no adverse effects, there was very little chance of me getting any this time round. Makes sense when you think about it! Also, if it was the drug causing your symptoms, I don't think you'd feel better from time to time. Anxiety can stop us from thinking straight, I know cos I've been there too. My advice (if you don't mind me offering it) is to stay calm & put your lung health first at the moment.

[ChrisLizB in reply to Hidden]

Thank you, it does make sense.

[GAtherton Administrator Fungal Infection Trust]

Most side effects happen when your blood drug levels are too high. Itraconazole is prone to this as the levels of the drug in your blood can be very unpredictable from person to person, even when given the same dose to take every day. It sounds like your doctors are already testing for this so that is great.

Continue to work with your doctors to find the right drug level for you. Side effects should gradually reduce but if they don't then don't hesitate to report back to your doctor as alternative medication does exist - though as you know all drugs can have side effects.

[ChrisLizB in reply to GAtherton]

Thank you - will be pleased to get the blood results in - hope to find that reassuring. My consultant is great, and will check with Manchester if needs be