ABPA

[Rosie701947]

Does anyone out there have ABPA? I am in an aspergillosis attack since September, had two courses of steroids, still unwell, been referred to hospital, appointment Thursday. Diagnosed with ABPA in 2008. Never been prescribed anti fungal drugs, which my GP says I need. I have moved areas so new GP. Am on countdown till Thursday to see specialist and get these drugs. GP can prescribe but would be happier for me to see expert at hospital. Meanwhile I am on countdown.

[Billiejean_2]

It certainly seems very strange that you weren't put on anti-fungals, Rosie. Lots of people here have ABPA so I'm sure you'll get some good advice.

[Rosie701947 in reply to Billiejean_2]

Thank you Billijean for replying, I am new to site, this is my first post. I am asthmatic also, and each time I got breathless I was always given steroids and antibiotics if I had a cold and I got well again. Moved house, new GP, told him I have ABPA and the first thing he asked was what anti fungal drug are you on?

When I said I have never taken anti fungal drugs he was quite surprised, told me I need them and referred me to consultant, I still am not on them. New GP wants me to wait and see the expert to get me well. He organised blood test which showed aspergillosis is present. Anyway, I guess have slipped the net.

Rosie

[Pam1952 in reply to Rosie701947]

Good luck Rosie. I hope that you get what you need very soon. Maybe it's a good job you moved 😆. Take care and let us know how you get on. Pam 😊😊😊 XXX

[Rosie701947 in reply to Pam1952]

Thank you Pam for your good wishes, will post how I get on after Thursday xxxxxxxxx

[mrsmummy]

Sounds like you have a good GP now.

[Rosie701947 in reply to mrsmummy]

Yes it does, he is very young, but has taken very good care of me.

Xxxxxxx

[Jaynair]

Welcome to the site Rosie good luck with your consultant appointment, I hope it all goes well and you get the treatment that is right for you. x

[Rosie701947 in reply to Jaynair]

Thank you for your good wishes Jaynair xx

[Hidden]

IHi Rosie. I have ABPA and you should definitely be on anti-fungals. I don't know what your blood levels are, but most people start on itraconazole (brand name Sporanox) together with a low maintenance dose of prednisone. Then you have regular blood tests to check your levels are reducing. Eventually, might take several years, you may be able to stop the anti-fungals & pred, but have occasional bloods just to check all is well. This is the stage I'm at now

[Rosie701947 in reply to Hidden]

Hello Hanne, thank you for info, it's an education. Has the anti fungal drugs had side effects on you ? I can be a bit intolerant to drugs and am worried that I will not be able to tolerate them. I know I need them, I am very unwell at the moment with this condition. I know I have had this condition for absolutely years, finally diagnosed in 2008, even then, no anti fungal drugs, just new inhalers. I am asthmatic too. My very first recollection of these symptoms were in 1991 and was taken into A&E and told I had Hyperventilation Syndrome and a letter for my GP. I was then given anti depressants and an appointment to see a clinical psyhcatrist. I now realise that I have had this condition for many, many years, at least I am still alive! I believe my immune system has fought the attacks off, but as I am growing older the attacks are more frequent and last longer. Still at least now I am aware and so is my young GP who was so surprised I had never been treated with anti fungal drugs before.

Thank you so much for enlightening me on this condition, I have been in the dark about it for so long.

Rosie

[Minushabens]

Yes I suffer with ABPA/SAFS as well. If you're suffering from an exacerbation then the first thing you need to be certain of is that it actually is ABPA. To that end, the diagnosis should be based on a range of blood tests & spirometry. Has that been done? Have you had CT scans, sputum tests, etc.?

If not, you probably need to start that process. And as others have said, assuming ABPA actually is the problem, you ought to be on something like itraconazole which will reduce symptoms in most cases. Be aware though I've been on it 2 years & am still well above where I should be on my readings (but a lot better than where I was).

There is a board on here called Fungal Infection Trust which is more specialist in terms of ABPA (moderated by Dr. Graham Atherton who runs the National Aspergillosis Centre), so you might get more targeted info there.

Good luck.

[Jacmidlands]

Yes, I have abpa too. I mostly manage with a steroid inhaler but twice have had a course of steroids. I was on Itraconazole last year but unfortunately after 5 weeks my liver enzymes went through the roof so that was the end of them. Lots of people can tolerate anti-fungals but make sure that you have regular blood tests to check any adverse effects. Good luck!

[Rosie701947 in reply to Jacmidlands]

Hello Jacmidlands,

Thank you for replying and the information regarding anti fungal drugs and liver damage and thank you for your good wishes.

Rosie

[tbeth]

Hello and welcome Rosie. I have ABPA and bronchiectasis. I was prescribed anti-fungals and had some pretty bad side effects. I'm on a maintenance dose of steroids now. It's good you have a new GP.

[Rosie701947 in reply to tbeth]

Hello tbeth

What was the side effects to the anti fungal drugs?

I have had intolerances to other drugs and am worried that this could happen again with these anti fungal drugs.

[Jacmidlands in reply to Rosie701947]

If you are on anti-fungals you will be monitored carefully.

[tbeth in reply to Rosie701947]

Rosie,

When I took voriconizole ,the side effects I experienced were: blurry vision, nausea and headache.. I didn’t take it very long because of these. My doctor wants me to prescribe another anti-fungal. I see her in a couple of weeks. Let me know if you have more questions. tbeth

[Rosie701947 in reply to tbeth]

Ok tbeth, thank you for your info

[mel909]

I had aspergilliosis a few years ago. I had two courses of anti-fungals, steroids, was very ill, before it was diagnosed. It took about a month to get any energy back at all, then another month to feel better, with a relapse about a month after.

So for me it was a long process.

Hope this helps. I am new to the site. Where are you?

[Rosie701947 in reply to mel909]

Hello, thank you for replying. I have been unwell since Sept. Before that an exaberation in Feb which went on till May this year. Have been very unwell this year with this condition. Yes Aspergillosis, I think, is ABPA, if not, I expect someone will correct me on this site! I am in Kent.

[mel909]

Is ABPA the same as aspergilliosis?

[hoping2improve]

Hello I have been treated for this, consultant gave me a month of steroids and itracozone ( spelling probably wrong) Took a while with plenty of rest to get better. Good Luck with your appointment

[Rosie701947 in reply to hoping2improve]

Thank you for replying, appointment at hospital tomorrow, but felt so unwell today, saw GP and more steroids, third course since September. My biggest worry now is that I don't have an intolerance to the anti fungal drugs. I have a couple of intolerances already and am always wary of new drug introduced into my system. We will see.

[hoping2improve]

Here's hoping for you. Unfortunately waiting is sometimes all we can do.

[Rosie701947 in reply to hoping2improve]

Thank you for your reply, yes it is a waiting game.