Anti fungal medication.

[R0B1]

Hi Guys i need some advice, can i ask if anyone has ever been proscribed anti fungal drugs for PF and if you noticed any benefits from them, as i am convinced they might help my condition but my doctor is reluctant to give me any of them as he is concerned about the side effects, thank you in advance. Robert.

[Hidden]

With the caveat that I’m not remotely medically qualified. Antifungal drugs are essentially antibiotics that treat infections caused by fungus as opposed to bacteria. Whilst breathlessness and wheeze are often symptoms of fungal infection, my understanding is fungigenerally tend to make most people systemically unwell eg. fevers, sweats, feeling rough. The exception to this is those with certain productive lung conditions, like cystic fibrosis and non-cf bronchiectasis, where the only signs of infection can be increased/changed sputum and increased breathlessness, although some will also be systemically unwell.

When you say doctor, are you talking about a respiratory consultant, and can I ask what it is that makes you think fungus may be an issue? Have you got a wet/productive cough that would enable you to send a sample off for testing? That would be the most reliable route to take, although not perfect. Have you had your spirometry checked to see what the trend is doing? With a fungal infection, you would generally expect evidence of obstructive problems, so a decrease in fev1 and/or a decrease in the fev1/fvc ratio. This is because of the airway irritation and subsequent narrowing fungus tends to cause. PF tends to primarily effect the fvc rather than the fev1 because it’s a restrictive condition. If you did have a fungal issue, treatment is just like a bacterial infection: you would take an appropriate antifungal for a limited period of time, albeit usually longer than normal antibiotics. My understanding is that even in conditions where fungal infections are relatively common, they’re never given as a maintenance treatment, only when culture or clinical signs indicate there’s a fungus present that requires treating. This is partly because they are pretty intense drugs, being decidedly heavy on the liver and kidneys, and also because just like with antibiotics, there are increasing levels of resistance in fungus to the drugs we have available. They’re also fairly expensive to prescribe.

[Patk1 in reply to Hidden]

Great info from U Charlie x

[R0B1 in reply to Hidden]

Hi Charlie,

Thank you for your reply you sound like you know what you are talking about, to be honest I have never heard of fvc and fev, five or so years ago I was diagnosed with hypersensitivity pneumonitis and six months after that my specialist and a professor I seen in London said it was Pulmonary fibrosis I had, after going through all possible causes they were unsure of an exact cause as I had been in contact with black mould, pigeon droppings, industrial dust most of my working life but in my opinion it was most likely caused my mould that formed in rotting grass cuttings as around six or seven years ago I started to pile my grass cuttings up to rot them down into my mulch pile for my vegetable patch and every week or so I would turn them over with a pitch fork and never thinking at the time they were full of a white mould that was rising into the air and I was breathing it in, now when I am cutting the grass I need to wear a mask as it’s a definite trigger and even if I go outdoors to sit on the lawn my coughing starts right away, for some reason I am also very sensitive to any scented household products, perfumes etc, on average would have two or three coughing fits per day and another most nights when I lie down each lasting between 30 and 60 minutes were I would be constantly cough up lots of sputum, talking also irritates it, it feels like someone had a feather duster down your throat 24/7. I have been on steroids from day one and also had 1000mg steroid fusions once a week for four weeks, for the past 5 years I have been on 2000mg of Mycophenolate mofetil per day I think this is some kind of immune suppressant as the specialist said my own body is attacking my lungs and for the past three years 300mg of nintedbanid not sure exactly what this drug does, but even with all this treatment my lung function results show on average 5% decrease every year. From the tests they have carried out fungal was showing as a positive but said they can’t be sure it’s what caused it. But the fact every time I go outdoors or near grass cuttings it triggers my coughing straight away and it started around the time I was breathing in the mould from the cuttings says to me it’s a high possibility that’s what caused it and from what information I have got from others an antifungal drug might work, I think at this stage anything is worth a go.

Thank you for all your help.

Robert.

[canthinkofaname in reply to R0B1]

Hi Rob1, you seem to be on a similar treatment regime for your PF as me. The Nintedanib is given to slow down the rate of fibrosis (Scarring) on the lungs. for me so far this has worked well for me although i have experienced a decline in my lung function since I started taking it. I was put on 2000mg of Mycophenolate last March after my consultant unsuccessfully tried to reduce my Prednisolone dose (was 10mg/day at the time) Dropping to 7mg made me ill and enabled lung inflammation to increase. The Mycophenolate is suppose to be a steroid substitute as long term use of them has potentially serious side effects. Mycophenolate is an immune suppressant so risk of infection is increased. I am now on a reduction program for my steroid while continuing the Mycophenolate so fingers crossed it will work this time.

You may have found that you are simply now very sensitive to this grass mould or possibly grass pollen and any exposure causes your trigger. I can't comment on anti-fungal medications but sometimes you have to keep pestering your doctor to try them. I hope you find a solution!

[R0B1 in reply to canthinkofaname]

Hi, thank you for your message it is very helpfull, i am also on 10mg of Prednisolone a day but from time to time usually once or twice a year when things get bad my doctor gets me to increase them to 30mg a day for a week then cycle down by 5mg per week until i get back to my usual 10mg, he is talking about increasing my other medications to their max and taking me off the Prednisolone as he is concerned about long term use, thanks again for your help.

Robert.

[hsoni30]

Hi RobertI can suggest hydrogen peroxide spray might help.

If you see my post about fibrosis I stopped progression one of thing I tried is hydrogen peroxide with other treatment though cant say which one effected most. See my post healthunlocked.com/asthmalu...

Hope it helps

H

[Jaybird19 in reply to hsoni30]

this sounds lethal !

[hsoni30 in reply to Jaybird19]

This saved my life, for fibrosis doctors have steroids which not going to stop progresion. My mother passed away in 2 years after Steroid. I am still alive after this from 2016. Still people can choose.

[Patk1 in reply to hsoni30]

Pls dont try this,or anything,without drs approval!

[hsoni30 in reply to Patk1]

This saved my life, for fibrosis doctors have steroids which not going to stop progresion. My mother passed away in 2 years after Steroid. I am still alive after this from 2016. Still people can choose.

[horseygirl_0103]

I ve never had them my apologies

[Lutontown]

What is PF?

[CarolMcl in reply to Lutontown]

Pulmonary fibrosis

[Caspiana]

I am on anti fungal medication for life because I had a lung transplant. This medication is very hard on the kidneys and yes there are unpleasant side effects. Unless a doctor recommends it, I would not take this on a long term basis.

[R0B1 in reply to Caspiana]

Hi Caspiana, thank you for your message it has been very helpfull my doctor said the side effects were harsh but he didnt say what they were, sometimes i think he keeps me in the dark for my own good not to worry me, i have an appointment with him in August i will speak to him regarding it again as i am not sure if being on anti fungal means dropping any of my other medications, thanks again for your help.

Robert.

[Rich1957]

I have Aspergillus and like you given a maintenance dose of 10mg of prednisone be very careful of long term use of steroids ( been off steroids for 6 weeks now , although it’s took 14months ) . I now have brittle bones so please use them sparingly and my consultants are trying their best to keep me off anti fungal drugs due to long term problems they can cause .

Please read fully about them before taking them and also look for other groups on Facebook for information . I don’t have PF just severe COPD so maybe you are in more need of anti fungal drugs but they still will effect you in the same way , all the best

[R0B1 in reply to Rich1957]

Hi Rich, thank you i am trying to gather as much info as possible on them i have been avoiding my bone density tests becaus of the covid situation in the hospitals, but i think i will keep my next appointment as i have developed pains in my hip joints this past year, are there any signs that might suggest you are developing brittle bones?

Thanks again

Robert.

[Rich1957]

For me it’s just bruising , skin peeling back when I knock it a little harder and lots of little cuts . Other than that I’ve not really had anything but I’ve been told my wrists are very likely to break and my spine doesn’t look very good , as I go on a lot of trials the doctor had a look at my Dexa scan and told me . I guess I’ll find out a lot more when I see my consultant In October .

Right arm

[R0B1 in reply to Rich1957]

Hi Rich,

thank you, so far I haven’t had anything like that and hopefully I can reduce or get off the steroids soon, I appreciate all your help, one thing I think has helped me is trying to stick to a good diet with plenty of veg and replacing sugar with the odd drop of honey, plenty of fruit with and a few pieces of pineapple each day is supposed to be good for your lungs.

Thanks again

Robert

[Rich1957]

I’ve lost 10kg since reducing my steroids ( to now stopped completely) I eat lots of fruit and veg , cut my sugar in coffee from 2 teaspoons to less than half , don’t really really like chocolate , but cakes 🍰 I can’t resist 🤦‍♂️😂😂😂All the best