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!!
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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: livestrong.com/article/4624...
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!
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 merckmanuals.com.
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!
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.
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.
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cos I wasn't well. We're doing 'Proud' at the moment, should be fun. 
Sudden downturn in health
Back in hospital trying to get proper testing...
Problems with chronic kidney disease?
Meeting in Staffordshire & gig in Ross on Wye!
Just diagnosed APS, Already have MS, Need support and advice please
