Sticky Blood-Hughes Syndrome Support
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Aspergillus fumigatus and chronic eosinophilic pneumonia

Looks like I have my diagnosis now: chronic eosinophilic pneumonia, with aspergillus fumigatus fungus. I suspect the fungus, along wth Sjogren's, is the cause. And, do you know, I printed out notes on CEP TWO YEARS ago when they told me I had 'pneumonia' and it just didn't ring true. When will I EVER learn to trust my instincts and press my case?!

Treatment of course is, you guessed it, high-dose steroids, starting with 3 days IV methylprednisolone, then oral steroids starting with 30mg/day for a week. Deep joy. So obesity, headaches, sleeplessness and even more bone density loss here we come! The assumption is I'll be on low-dose steroids for ever. No way! Too awful to contemplate. Will speak to my lovely naturopathic doctor soon and find an alternative.

GOOD news is I should start to feel massively better very soon.

Anyhow, thought you'd like to know, and bear it in mind if any of you experience vague, slow-onset coughy/SOB/chesty symptoms. Don't let them fob you off!!

16 Replies

I am sorry for you, but also pleased that finally the detail has surfaced with your specific case, I wish you a speedy recovery. I will now go and do some research and see what I can find for you. Mary F x



and: re: naturapath... but please make sure your medical team OK's it with your other medications, this just looked interesting:

Mary F x


Yes Ditto what Mary says. Im now suspicious as to why My Gp stuck me on steroids a couple of years ago after a couple of doses of antibiotics did not work and I was having the exact same symptoms. when I asked why she just said she wanted to take all precautions!! Hmmm......

I will say that I was just on them for a week though so perhaps you will be the same. Whats interesting in this is that about 15 years ago I had a really bad bout of what I thought was a virus/Flu which ended up with this hacking convulsive type cough which had me floored for 3 weeks and again a month on antibiotics. I lived abroad and used to volunteer in a hospice......warning bells coming on after reading all of this Im starting to wonder. It was before I got dx with anything but since then always seem to come down with a chesty cough if I catch a cold. This year was given the pneumonia vaccine so not sure if that will help.

Thanks so much for highlighting this really interesting and I do hope this helps you to feel better soon. x


Thanks Mary and AbFab (sorry - that's what I always think of you as!). I will check out those sites, Mary Unfortunately, they are saying low-dose steroids for ever. But that's just not acceptable, either medically or 'cosmetically'. We'll see.

Also, my naturopath is also a doctor, so no worries with conflicting medications or whatever.

AbFab, not sure the pneumonia vaccine would help with this particular 'brand' of pneumonia - cos it's not the infectious variety, it's allergic in origin (hence the 'eosinophilic' bit). But it's certainly worth you bearing all this in mind, isn't it, if you get another nasty chesty bout. Get them to cover all bases!

I shall report on progess.... :-)


Dont apologise....that was the point after all!! :-D


I was going to add that my upper respiratory and chest infection of last week treated with a three day course of Azithromycin has now been followed up with a steroid inhaler for both nose and chest........should I be concerned???

The thing is Im not coughing, well not really its just my chest hurts as does my right cheek but I can breathe, no stuffy nose just lots of pressure at the bridge of my nose and eyes stinging. Three weeks this has been going on. Perhaps I should get a trumpet........


It took an age for my children's mycoplasma to get picked up... my daughter ended up with agonizing chest pains... and was referred back to the paediatrician we have now, a long time before diagnosis with Hughes and Lupus... he was so on the ball, when I explained how many months she had been coughing, literally all night sometimes...In the mean time I had her allergy tested and she was fine etc... however when my son started up they were a bit quicker...The paediatrician was clear on his explanation of our particular bogey man... ie not quite a virus and not quite a bacteria almost a cross between the two.. my daughter had to have an inhaler for a while due to the asthma type symptoms... but I dealt with that, she joined a choir and also took up the saxophone, and her reduced lung function got better and better until a few weeks down the line, she was far better than average, and end of inhalers. In fact several of my friends children with asthma followed suit with a wind instrument! Mary F x


AbFab, hmmmm, dunno, but inhalers did nothing for me, other than very marginal, very fleeting relief.

Partly depends on your relationship with your GP/rheumy I guess. If good, maybe press for more investigations? Could be 'nothing', i.e. a passing virus. But then, given our underlying conditions, it could also be a mycoplasma, could be allergic, could be....????? Best to be sure, eh?

I think I found out about eosinophilic pneumonia by looking up pulmonary complications of Sjogrens. The article I printed out was from

I'm in a choir too! And I certainly notice my breathing gets better when choir is in session. Miss it when we're on a break, as we have been over Xmas. And I couldn't make the first week back last week :-( cos I wasn't well. We're doing 'Proud' at the moment, should be fun.

Right now I'm supposed to be editing an article for 'Lupus' (part of my job as an editor), so better get back to the coalface.....


Oh, and Mary, I'm really excited about that livestrong link you sent. I may even have some olive leaf extract somewhere in my vast pharmacy cupboard.....


I'm glad you have some answers. APS affected my lungs also. I used to get pneumonia constantly and used to cough up a lot of blood on a daily basis. This began in 2006. I was on high dose steroids (80mg daily) for a while. Yes I blew up and looked horrible!! Now, 6 years later, I am on 5 mg daily and feel "nearly normal" Its been a long 6 years, but I am doing so much better.

Good luck, I know steroids suck, but they do help.


Oh Gawd, Zaney, 'blowing up' is just not acceptable, not negotiable, ain't happening. I will HAVE to find an alternative approach. I just about hack the 'short sharp shock' phase I'm doing now: 1g IV over 3 days, then 30mg/day for a week, 25mg/day for a week, and then 20mg/day for a week - but then that's IT, done, over, finito, no more!

Glad you feel better.


Hyperbaric Oxygen therapy has been used in immune compromised patients that contracted fungal infections such as aspergillus. This link gives info of a trial of HBO on immune compromised patients that had fungal infections.

Many multiple sclerosis therapy centres offer this treatment.

The centres in Kent are in Swanley and Canterbury;

Hope this helps - Maddie


Oooh, thanks Maddie, I'll check those out. Just dashing off to hospital now for my 3rd 'lovely' steroid infusion.

I also wonder if hydrogen peroxide might help. I'll review that as well.

Have got some olive leaf extract tabs and some coconut oil, MaryF - so I'm starting work on the little bugger with those already too!


and did you see my bit above, re my daughter and a wind instrument.. may be too soon, to exercise them, but singing or playing an instrument improved lung function, it certainly got her off inhalers and improved rapidly. Mary F x


Well I'm in a choir already. I was at rehearsal last night, and was finding, what with the warm-up breathing exercises, and the breathing during singing, and the jigging about, it was starting to shift some gunk. So, yeah, definitely a good thing to do.

Starting to feel a bit brighter already, after my first two 1g(!) methlyprednisolone infusions.

Have a good weekend, JudyCoppernob


Good for you, Mary F x


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