Greetings all,

Adding my perspective to the recent discussion about managing
candida…

There is quite a lot of evidence and experience indicating that
courses of the imidazoles [difluccan = fluconazole and sporonox =
itraconazole] are best taken sparingly by people with APECED. An
important reason is that resistance can develop, and unfortunately
one finds that out "too late". So it isn't the safest option for us
to take these as prophylaxis – better to keep them for when they are
really needed.

The liver damage risk is apparently less with these "second
generation" azoles, and can be checked with a blood test, and the med
stopped if necessary. [Ketoconazole was the "first generation" - it
became available when I was aged 30 and was a miracle for me, and
fortunately didn't cause me liver damage.]

For oral and oesophageal candida, amphotericin lozenges or nystatin
pastilles are very effective. They have been around for many
decades, and extensive experience with them has apparently shown that
resistant strains of candida don't develop. In practical terms, that
means that, unlike with most antibiotics, one does not have to be
scrupulous about taking a complete course….which is good to know,
because from memory they take about half an hour to dissolve away in
the mouth, and so one has to remember them outside of meal-times..

We can't eliminate candida entirely from our systems – it's around us
everywhere and our APECED immune systems can't fight off new candida
challenges well. But with judicious help from anti-fungal meds, and
considering what else is going on for us, we can keep it in check.
Candida flaring in my mouth or oesophagus is a warning that I am
under prolonged stress, or something is out of balance [eg serum
calcium running a bit low] indicating that meds need adjusting. I
take prompt action sucking lozenges until the candida clears [2-3
days is usually all it takes to be symptom free – I continue a bit
longer for good measure], and I try to deal with the stressor or meds
imbalance also.

I have shared the above with several members of this forum over the
years in personal emails, after my specialist physician's timely
advice in 2000. Now the message is also in the patient guidelines on
the European website www.apeced.net ; and a recent publication out of
Finland of which I have seen only the abstract so far: [Decreased
susceptibility of Candida albicans to azole antifungals: a
complication of long-term treatment in autoimmune polyendocrinopathy-
candidiasis-ectodermal dystrophy (APECED) patients. Rautemaa R,
Richardson M, Pfaller M, Koukila-Kähkölä P, Perheentupa J, Saxén H.
J Antimicrob Chemother. 2007 Aug 17; [Epub ahead of print].

Best wishes
Jeanette in New Zealand
[diagnosed with APECED more than half a century ago, juggling
increasing complexity as the decades pass, having to adapt to very
much reduced energy these days, but still smiling most of the time]