Anti-fungal medication

[Suzie27]

Hi, has anyone taken anti fungal medication and if so, how long for, did you have side effects and did it work?

[peege]

A few related posts to the right Suzie (or scroll down on a phone) which may help.Years ago I was invaded with candida and had to cut out every form of sugar for 3 months.

Maddenbrew will be along soon with her recent experience. P ××

[Suzie27 in reply to peege]

Thanks Peege, I will see if I can find anything in the related topics

[peege in reply to Suzie27]

Arrgh, reading further down I see its aspergillus treatment that youre inquiring about, so sorry. I was investigated for it in 2013 due to it always in my sputum tests and some blood tests because I'd been quite unwell lung-wise for 3 years . Had allergy tests at St George's SW18 which showed strong allergy to mould and mild allergy to aspergillus. Finally a CT scan was done which showed no pockets of aspergillus.

It had been explained to me before CT that not to be alarmed if I saw black patches on the CT ( it can look like cancer apparently) & that only the consultant could interpret it. Also explained that if it was there then it would be managed with antifungal medication.

Thankfully I was clear and over the years since have improved a lot - so I do so hope that if you do have aspergillus that theyve caught it early & you'll take the antifungal medication to keep it under control.

Good luck and very best wishes xxP

[Suzie27 in reply to peege]

Many thanks Peege for your kind words - my fingers are firmly crossed that the results don't come back too bad on Monday. Have a good weekend xx

[Hidden]

This will vary a lot depending on which fungus needs to be treated, the extent of the infection, and the underlying condition(s) someone has. My daughter has cystic fibrosis and has chronic fungus in her lungs. To date she’s been treated with fluconazole once, posaconazole several times, and IV amphotericin B a few times. She tends to be pretty lucky with side effects generally, not suffering much at all even with the really hardcore drugs, and didn’t really have much issue with any of them. The posa does tend to significantly reduce her appetite, but we can offset that somewhat by giving it to her before bed rather than in the morning. We’ve found she has the best response to the posa rather than the IV amphotericin, but struggle to get culture to know for sure what it is we’re trying to treat. She definitely has a fungus called e.dermatiditis, but there’s a suspicion that she may also have Aspergillus floating about, we’ve just never managed to catch it. She doesn’t have ABPA, but had a chronic fungal bronchitis for about 6 months back in 2019, before the medics twigged and agreed to give her anti-fungals, and we’ve had minor recurrent flares of fungal issues ever since.

[Suzie27 in reply to Hidden]

Thanks Charlie, my new Consultant is wanting to treat me for Aspergillus infection but I don't think I have that in my lungs although I am allergic to it or so they think - I'm not sure that it's ever been confirmed. A bit like you say - maybe they haven't found anything but assuming it is Aspergillus. My former Consultant, who I saw a month or so ago, said steroids for a few months 20mg but new Consultant is thinking both steroids and anti-fungal - I expect one of the meds you mention above that your daughter has taken. I don't fancy taking both ugh... Just wanting to get as much info as I can as speaking to new Consultant on Monday. Sorry I'm burbling on.....

[Hidden in reply to Suzie27]

So, ABPA is easily diagnosed via bloods: you’ll have very elevated Aspergillus specific IgE, and usually elevated IgG. Aspergillus infection is harder to pick up as it’s dependent on sputum culture, which is hit and miss generally, and somewhat dependent on the culture protocols at the hospital you’re under. The team we’re under now culture in the lab for fungus in their cf patients and bronch patients for 4 weeks. The old team we were under only cultured for 2 at that time. It was the difference between finding the e.dermatitidis and not. You also need to make sure that any sample for a patient with ncfb is being run under cf protocol, as cf protocol cultures for longer generally, to make sure they pick up the bacteria that are commonly a problem in both conditions, like pseudomonas.

Honestly? My advice if you wanted it would be to very strongly say take the antifungals, and I’ll explain why. Steroids will damp down the inflammation, they won’t get rid of the fungus: there’s a lot of misunderstanding even amongst some doctors as to what ABPA is. I can send you the links to further information if you want it, but whilst it is an allergic response, we now know the fungus being reacted to isn’t just in the environment, in many cases where symptoms persist in spite of steroids, it’s actually present in and has colonised the airways. It means that ABPA can actually be an infective process: spores inhaled by an allergic person colonise and grow in the air spaces in the lungs, at which point steroids just aren’t going to cut it, because the issue isn’t just residual inflammation, or inflammation as a result of coming into contact with it in the air, it’s the physical presence of fungus inside the lungs. In that instance, it’s the equivalent of being hugely allergic to cats and having one hiding under your bed without you knowing.

I read up on all of this because of the child and the experience I had with her. She was really quite unwell, lung function completely pants, repeated IV antibiotics doing nothing, and persistently wheezing, when wheeze is not a normal feature of her cf. It took 6 months and 4 admissions to hospital totalling 11 weeks, under two different specialist teams on different sides of the country, with me repeatedly telling them she was potentially exposed to fungus via compost (school had a very bad day at the office shortly prior to the issues starting), please can we try antifungals, before they gave in. But they only gave in because they were having her in every 6 to 8 weeks with no effect, and there was literally nothing else to try short of knocking her out and doing a bronchoscopy. The reason they were struggling to accept fungus? Because her Aspergillus IgE was normal, so it couldn’t be ABPA. Had her IgE been raised, they would have given her antifungals without hesitation. The second team, that she’s now under permanently, are based at arguably one of the best respiratory hospitals in the world, and they’ve only really just got their heads around the fact that fungus - and not just Aspergillus, but all fungus - can cause several problems other than the allergic response you see in ABPA. I had to point out to them as a well read layperson that even though her IgE was normal, her Aspergillus IgG was elevated, meaning she’d definitely been exposed to Aspergillus, and that meant the issue was almost certainly a fungal bronchitis. When they gave her the posa for the first time and she was completely well within 3 weeks, after almost 8 months of hell by that point, they told me ‘good punt’, yet even now I still struggle sometimes to persuade them to give her antifungals in the absence of bloods suggesting ABPA or positive culture. They’ll resist on that basis, eventually give in because she’s not right, and then she invariably gets better with the antifungals - I’m going through it again at the moment 🤷‍♂️

You have to make the decision that’s right for you, but knowing what I do, and assuming you’re still symptomatic, I would wholeheartedly agree with the new consultant and say try the antifungals. What you get offered may vary to Bod, as cf patients generally have access to a wider range of drugs, but it will probably be an Azole antifungal, possibly itraconazole or voriconazole: these are similar to posa, and first line treatments for Aspergillus in many cases.

[Suzie27 in reply to Hidden]

Thanks Charlie, this is hugely helpful and very informative, you obviously know your stuff! I'm so glad your daughter responded well to the anti-fungal and didn't get side effects as this is what worries me most. You are the first person to recommend the anti-fungal and I can see why. I will have a ponder over the next few days. She is going to give me results from blood and breathing tests on Monday and then what she recommends but a few weeks back before I did the tests she was definitely thinking along the lines of anti-fungal and a small dose of oral steroids. Maybe that would work. Thanks for your help.

[Hidden in reply to Suzie27]

My experience with Bod over the last 13 years has lead me to conclude that respiratory medicine is genuinely about 75% educated guesswork, particularly when it comes to what’s causing the problem and how to treat it. Scans and spirometry can tell you what’s happening, but they can rarely give you the why. So you look at what’s currently growing (if anything), what’s been regularly grown or caused significant problems before, any useful bloods like the Aspergillus immunoglobulins (IgE/IgG), and then go for the best guess treatment strategy based on what you know is definitely there, and to cover what else you have a degree of suspicion possibly could be. If it works, great, problem solved, and you have a working plan to try if the same thing happens again. If it doesn’t work, you’ve at least narrowed down the possibilities and options, and go back to the drawing board to try something else. It’s made all the more complicated by the fact that just because something shows as sensitive to an antibiotic or antifungal in the lab, it doesn’t mean it actually is when given to the patient, and the other way round, too 🤷‍♂️

The decline in ncfb is generally slow, much slower than it historically has been in cf, which is one of the reasons why there is such a disparity in the treatments offered between the two groups. That may well change in the years to come thanks to the new meds emerging for cf, but there will still be decline with repeated infections in the same way there is in bronchiectasis currently: anything left uncontrolled in the lungs is eating into lung function, however slowly. Side effects can be a problem, but there are ways to manage many of them, such as meds to help with nausea etc., and it’s pretty rare in medicine that there’s only one available drug to do a job - if the side effects are that bad, you can always see about trying something else. But once you lose that little bit of lung function, it’s generally gone for good, and tiny bits of lost lung function eventually all add up. I don’t have a lung condition, but I do have my own chronic health problems, and the side effects of some of the meds are a bit pants, but the way I look at it is what’s the alternative? If I don’t try the meds, my condition is pretty intolerable, and there are long term, permanent consequences. If I take the meds, the side effects are sometimes a bit grim, but I potentially lead a better quality of life over all, and the permanent consequences are diminished. I’m not trying to put pressure or influence you either way, but the big picture is always worth looking at. If you try the antifungals and it sorts things out, you’ll feel better, and hang on to more of those little bits of lung function that the Aspergillus will otherwise steal from you over time. If it doesn’t work, well, at least you’ve ruled something out, even if it’s just one particular drug.

Anyway, good luck, I’ve waffled more than enough and don’t feel obliged to reply 🙈 Would be good to know how you’re getting on once you’ve made a decision, though, if you felt like it.

[Suzie27 in reply to Hidden]

Thanks Charlie, wise words and something to think about - the bigger picture. I will let you know how I get on. Have a good weekend x

[lovered in reply to Hidden]

Thank you, Charlie. Very helpful information. I was diagnosed with ABPA last summer. I had difficulty getting to hospital because I didn't 'tick all boxes' for A&E, but thanks to my GP, they accepted me after 10 days of pyrexia and sleepless nights. They suspected earlier in March-20 that I had ABPA because I had lung issues since Jul-19 but could not do examination in the lockdown. The medical team was treating me with Itraconazole liquid and Prednisolone starting on 30mg, for 4 months (Prednisolone slightly less). I was not given clear instructions regarding precautions and life style. The doctor who has been in touch with me gave me some information which is contradicting some advice received by other doctors (in hospital) and with the information which I found online (on government and similar legitimate websites, she told me not to search info online :() For example, I read about Aspergillus fungi in food and what to avoid, in house plants, going out... I asked the doctor about it and she said that I cannot avoid Aspergilla, that any precautions would not work and that I should live a 'normal life'. I am still confused whether it is possible to avoid further complications or not.

The Dr advised my GP to prescribe me Prednisolone if I have issues with ABPA in future. I don't like that idea. I'd rather take antifungals because it does treat something as opposed to steroids. I don't know what to do and how to recognise ABPA if it flairs up again because I have multiple issues, most of which have not been diagnosed. (I believe I had Covid in 2019, but I wouldn't go into that now. My symptoms match most Long Covid symptoms experienced by the people who were diagnosed)

[Hidden in reply to lovered]

Don’t misunderstand: steroids on their own can absolutely be an appropriate treatment for ABPA symptoms. The wheeze/breathlessness stems from inflammation triggered by allergy, and that can occur purely through temporary exposure i.e spores inhaled walking past a compost heap being turned, for example, rather than because it’s resident in the air spaces and growing. If it’s transient exposure like that, then antifungals really aren’t going to help or do anything, but if you’ve had steroids for a bit and the symptoms aren’t resolving at all, then it would be reasonable to try antifungals then on the assumption that spores may be lurking. The doctor is also right in so far as it’s all around us, you can’t really avoid coming into contact with it, although you can mitigate exposure to large volumes of spores by avoiding certain areas and activities like stables, compost, not disturbing black mould in housing unless the person will be out of the house for at least 48 hours etc.

Have you been to the Aspergillus.org.uk website? They have a lot of very in depth and useful information, both for patients and professionals. It’s directly associated with the National Aspergillosis Centre based at a hospital in Manchester. There was also a board here at one point that one of the consultants involved with the NAC set up - it’s very, very quiet generally, and gets a lot of posts about thrush in various places as opposed to what it’s intended for, but the doctor in question replied to me with the centre’s contact details and offering to informally discuss the child’s case if I thought it would be useful. Not sure if it’s still running, though.

[lovered in reply to Hidden]

Many thanks, again. This is very helpful. It makes sense that I was treated with both: steroids and antifungals. However, for future occurrences, the consultant suggested only steroids without checking if I have fungus in my airways, which I had last year and I was coughing it out (tiny bits looking like dust). I also have a fungal infection on my hand for about 3 months now. I don't know if that's related in any way. Also, the consultant said, after I was diagnosed with ABPA, that I need to do allergy tests to check if I'm allergic to Aspergillus. I thought the name of the illness means that! It was later confirmed that I am highly sensitive to the fungi. Could antihistamines work with it instead of steroids? I'm in postmenopausal age and already have osteoporosis. If I take steroids I'll have to take another medication to prevent further development of osteoporosis

I have red some information from the website Aspergillus.org.uk, but the information by my consultant is different, so I stopped reading because I felt confused and thought what was the point if the doctors who are treating me are saying different. For example my consultant said that Aspergillus is not found in aircons, while on the Aspergillus website it is listed as one of the sources. I'm not sure whether it would be better not to have any plants in my living room or not. (I reduced them, though). My flat is very dry, no (obvious) mould.

I will join the groups on the Aspergillus.org.uk, including the NAC. Where did you post your question to which you received reply?

I'm very grateful to you for providing so much useful information.

[Alberta56 in reply to Hidden]

I am full of admiration for your persistence, Charlie, in the face of medical inflexibility. Is it perhaps easier to strop for a loved one, especially a child, than it is for oneself?

[Hidden in reply to Alberta56]

Yes!! I’m absolutely useless advocating for myself, but have no issues at all putting my foot down on behalf of Bod, family, and friends 🙈 I also research her stuff until I’m confident I could hold an informed conversation with most registrars and a decent percentage of consultants, but only two weeks ago discovered I hadn’t received the correct, very basic care for something I have for the last 10 years, purely because I hadn’t actually read up on it properly. Like most things in life, it’s always easier to push on someone else’s behalf than it is your own.

[Alberta56 in reply to Hidden]

I'm glad I'm not the only one. Will have to try and follow Littlepom's advice.

[MELNEL]

Depending on what kind of fungal infections you have. I used nystatin had a Thrush once in my mouth when I was in hospital from all the medication I took. I didn't had any side effects when taking it and it went away after a week or so. So I guess it would be helpful to know what kind of fungal infections you suffer from to give you a honest answer. Best wishes 🌺🌺🌺

[Suzie27 in reply to MELNEL]

Hi Melnel, sorry I should have given more info as above to Charlie

[MELNEL in reply to Suzie27]

No worries I now have seen it. I really hope they can give you the right medication to clear that nasty fungal infections. Best wishes and stay safe 😘

[Jaybird19]

Do you have more details ?

[madonbrew]

Hi Suzie,

I haven’t read through all these responses properly so apologies! I’ve recently had oesophageal candida and felt really rough for 6 months..lost 2 stone, nausea and abdominal pain. After an endoscopy that revealed widespread thrush I have had a course of fluconazole. I think it’s actually really helped after a long time of symptoms!

I’m not sure about aspergillus though but it looks like Charlie has given you some very thorough information!

Hope it gets sorted soon and starts to get better quickly!

Dee 😊

[Kristicats]

Yes I have to take fluconazole after taking antibiotics .Ive not had side effects from fluconazole. I’ve also taken it as candida was present twice in my sputum samples. I think it is in my lungs regularly as I regularly get the white tongue and thick brilliant white sputum . I feel this is due to prolonged use of steroid inhalers. ?

[Alberta56]

Good luck, Suzie. This seems a horribly complicated thing to sort out.

[Biker88]

I have Aspergillosis and have been treated with Itraconazole and Voriconazole, Posiconazole is an option as it has less side effects. ABPA suffers normally have to take anti fungal meds for life. The NHS website Aspergillosis.org has lots of good information on aspergillosis, and there are two very good Facebook groups National Aspergillosis Centre Support and Aspergillosis Trust Support. The National Aspergillosis Centre support group is managed by the NHS staff at Wythenshaw hospital so there is the option to ask direct medical questions to qualified people( UK based people)

[lovered in reply to Biker88]

Thank you for sharing this information.

[Suzie27 in reply to Biker88]

Thanks for this info Biker88 - this site is so good for getting advice ! I know Charlie also mentioned Posiconazole - I could ask Consultant about this med. I will also take a look at the NHS website but someone told me that Aspergillosis and ABPA are not the same? They do seem to be the same ugh... it's confusing.

[Biker88 in reply to Suzie27]

There are 3 main versions of aspergillosis, ABPA allergic bronco pulmonary aspergillosis, symptoms are similar to chronic asthma. CPA chronic pulmonary aspergillosis this is an infection and normally forms a fungal ball an aspergillioma in the lungs. Symptoms as for lung cancer and TB generally coughing fresh blood, CPA diagnosis after the cancer and TB ruled out. The 3rd one is invasive aspergillosis this however is usually only found in hospital patients who are being treated of other major diseases. If you have invasive it is very unlikely that you would not be in hospital. Getting a good diagnosis is important as lot of doctors do not encounter aspergillosis, Wythenshaw hospital National Aspergillosis Centre will take referral from any UK NHS GPs or consultants.

[Suzie27 in reply to Biker88]

Thanks Biker88, hugely helpful as it is so confusing. I now know a bit more about the conditions related to Aspergillus.

[Modola]

Hi Suzie27,I hope your well?

Just to say I've been living with the diagnosis of ABPA for 7 years now, initially my consultant just tried me on steroids only for the first two months but it really wasn't working, just felt like I was fighting an infection still. Adding the antifungal, itraconazole made all the difference, no side effects for me but initially I did have to have regular blood tests to check my liver function - I'm now only on them for six months of the year, rainy season end of October to the end of May. I can't get off steroids at all, they have caused me to have osteopenia and adrenal suppression but my life is far better with them than without, so as long as you make sure you are properly monitored and most importantly you know your own body better than anyone, any changes when your on them ask questions!

Best wishes always 😊

[Suzie27 in reply to Modola]

Thanks Modola, this is really interesting as my former consultant was wanting to put me on just steroids and the new consultant thinks small dose of steroids plus anti-fungal - so similar to what you are taking. Thing is with me I don't feel ill at all and so it's really difficult to remember that something is going on in my lungs that would eventually make me very ill. I know need to go onto meds that I know will probably make me feel ill! I am so glad to hear you have things under control now and glad that you had no side effects from anti-fungal - the more I am hearing about these drugs will help me to make an informed decision on Monday. Thanks and have a good weekend x

[Modola in reply to Suzie27]

Hi Suzie,It's very difficult as I remember asking the same question of my consultant when first diagnosed with my condition and her answer made my mind up quite easily, if I didn't take the meds then they wouldn't be able to treat me at all in 10 years time! I know with my ABPA it has caused me to have bronchiectasis as well so all these things can lead to another.

Be led by your consultant and any CT scans what are taken and bloods, IgE etc but most of all don't worry, you are obviously very aware of yourself, so going forward whatever they put you on your 1 step ahead.

Have a good weekend, best wishes always 😊

[Suzie27 in reply to Modola]

Thanks Modola, yes I needed a reality check - had my head in the sand a little! I now know I need to take something and have come to terms with it. Have a good day

[Northern-soul]

Hi Suzie,I have had problems with fungal infections for years. I had oral Candida for around 5 years and had all the treatments available. I tried the diet which cuts out almost everything except for lean meats fruit and vegetables for several months, I lost lots of weight but it didn’t cure my problem.

Eventually I was referred to Wythenshawe, the National Aspergillus centre.

My Aspergillus IgE was normal, my skin prick allergy test showed that I was allergic to Aspergillus along with many other thing. (Long history of allergies/asthma). I was diagnosed with severe asthma with fungal sensitization (SAFS). I also have Aspergillus positive sputum cultures several times a year. I was treated with Itraconazole but unfortunately had to stop due to elevated liver function tests and oedema (I have gallstones).

I was started on nebulised amphoteracin B and I have never looked back since. I went from being so severely breathless I had to stop for breath on every step going upstairs to being able to get to the top of the stairs without stopping after 6 weeks of starting amphoteracin. Incidentally the oral Candida disappeared after starting the treatment.

I have probably been talking these nebulisers for around 8 years or so now. Although for me they have made a big difference in my life, many people are unable to continue with them. Some people cannot tolerate it due to bronchospasm. Many others find it very time consuming. They have to be kept in a refrigerator and it involves needles and syringes, lots of sterile water ampoules. Going away on holiday is a nightmare as you can imagine!

Unfortunately until I get my gall bladder removed it seems to be the only treatment available to me. Unfortunately I have several other respiratory problems that make surgery out of the question.

I hope this helps you.

Good luck with everything,

C x

[Suzie27 in reply to Northern-soul]

Oh I'm so pleased that you have found something that works for you. We are all different and this, in a lot of ways, is the problem. We just have to keep trying things until they hopefully work. It is the side effects of liver and heart problems that worry me about the anti-fungal and you obviously experienced these. I've just started using an Acapella for clearing lungs which is great and also drink anti-inflammatory teas such as Turmeric and do various other things to try to help. I will have to start some treatment next week - not sure what yet but thanks for your helpful reply. I will get there

[Fear_not]

May or may not be helpful for what you need.

Oil of oreganol is an anti fungal, anti parasitic , anti viral, anti biotic topical and sublingual medicine.

Read about it’s medical properties on line.

Also olive leaf has strong anti fungal properties.

[Suzie27 in reply to Fear_not]

Oh thanks, that’s really interesting- I haven’t heard of that. Will look it up x