ABPA sufferer: I have a poor quality of... - Aspergillosis and...

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ABPA sufferer

annrobbie profile image
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I have a poor quality of life owing to this illness. I am taking antifungal pills and 10mg of steroids each day. I find they are not helping.

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annrobbie
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sparrowhawk profile image
sparrowhawk

It may be that you need to increase your steroid dose for a while. Your consultant would be able to advise you.

annrobbie profile image
annrobbie

Thank you for that Sparrohawk. Decided to contact my Dr on tuesday. I do agree with your comments.

Coppernob profile image
Coppernob

Annrobbie, I also have suspected ABPA. Tried Itraconazole but didn't tolerate it (migraines) and in any case my consultant didn't feel it was 'compulsory' since I don't have an 'infection' as such, more an overrreaction to normal levels of aspergillus.

Consultant wants me on at least 10mg prednisolone/day. I'm determined to get off it. It gives me migraines, constipation and I'm gaining weight hand over fist. That's before you consider ruining what bones I have left. Plus, I can't see that bludgeoning the immune system into submission is the right way to go.

My PLAN (but best laid plans and all that....) is to get off steroids while also introducing naturopathic treatments - antihistamine, antifungal, anticatarrhal, anti-inflammatory, antimicrobial, immune support/regulator, etc.

I have also been referred to a top asthma guy at the Brompton (Menzies Gow). And I know I need another bronchoscopy, both exploratory and to remove the large mucus plug in my right bronchus.

I intend to explore with my rheumy how much APS/Sjogrens are contributing to this state of affairs. I also want to ask him about low dose naltrexone as a general autoimmune treatment - I've been hearing good things.

I will be interested to hear more about how you get on, Annrobbie - it's a tricky situation to deal with, isn't it? And the drugs, as so often is the case, can be as bad as if not worse than the underlying condition.

GAtherton profile image
GAthertonAdministratorFungal Infection Trust

You need support from people who are also living with ABPA. Try our support group at uk.groups.yahoo.com/neo/gro...

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