This is my Aspergillus story, told using my posts on the Aspergillus Forum. It stands as a pretty accurate diary and guide to how the diagnosis and treatments have made me feel.
Monday, September 22, 2008 8:00 PM
I’m also new to the group and am very fortunate from the posts I have read. I am 43, live in the county of Cheshire in the UK and am a lifelong sufferer from asthma, taking corticoid steroids for over 15 years, including Seretide 500 (one puff, twice daily) for the last 4 years.
In Jan 2007 I became ill; at first thinking I was having an asthma attack. I saw my GP and was diagnosed with a probable partially collapsed lung and pleurisy. I was treated with Prednisolone (40mg daily for a week) and a series of antibiotics and my blood tests showed a higher than average cholesterol level, so I was put on a daily dose of 40mg Simvastatin.
After 3 months and a few scares for my wife as I regularly stop breathing in my sleep, things settled down and I was able to return to work (good thing, as I’m self-employed). However over the next few months I would have re-occurrences of the illness and miss a week or two off work. After 10 months of intermittent illness I asked my GP to refer me to the local chest specialist at the Hospital and I saw him in December last year. I had a lot of tests, and more chest x-rays. He changed my medication adding Singulair 10mg and Spyriva 18mg to my Seretide and Simvastatin. My health started to improve remarkably quickly from there on and I saw the consultant in June this year followed by further tests and x-rays.
I am now diagnosed with ABPA, which seems to be under control (although I must admit I’ve just had a further month off work with two weekly treatments of Prednisolone (40mg daily from my GP) and a CT scan has shown no invasion or permanent damage to my lungs following the original fungal infection last year. My lung function is fine, with a regular peak flow of over 610 l/min. However, I am far more limited in the things I can do; exercise is a definite no-no, a gentle walk being the best I can achieve. I get pains in my chest on a regular basis (which was quite funny the first time as I was whisked off to hospital with a suspected heart attack) and I can’t drink (boo-hoo, all those lovely malts still to be sampled). I am constantly tired with little energy and thus les inclination to do things. Fortunately I don’t cough blood, just mucus.
Can anyone in the group suggest ways forward to improve my energy and reduce my tiredness (I did read something about Vitamin Q10 but was wondering if any had tried it and found it useful) or is this now how it is going to be.
Tue Sep 30, 2008 7:21 am
Sorry to hear that you are feeling worse, I’ve just got over my blip from last week and gone back to work, which was hard. I’ve not noticed any residual flavours left over from my meals, but then again I don’t often have a nap after my meals. On the odd occasions when I have had a nap in the afternoon, I wake up with the “mouth as an ashtray feeling” which just enforces the habit to not sleep during the day 🙂
Fri Oct 3, 2008 7:37 pm
I have to agree with the belly thing. Four years ago following my divorce, I lost lots of weight and even became slim, which is when I met the current Mrs Bradley. I was active all the time with work and also playing with my step-daughter (now 13); a 12-14 hour working day being acceptable and the norm.
Nowadays, following higher doses of Seretide for my asthma and the oral steroids to get over the ABPA I look like I’m having twins/triplets or even a small football team on a bad day. Fortunately I’m 5’10” (on a good day) so I just look like a heavy drinker. On a positive note though, it does give me something to rest a pint pot on the odd occasion I do have a drink and I do rest my morning cup of tea on it whilst watching the TV news 🙂
Tue Oct 14, 2008 7:28 am
Your symptoms sound very similar to mine. I am asthmatic with a peak flow of 610-650 l/min, so I know I’m not having an asthma attack. There are times when I wonder if I have ABPA at all, as my symptoms don’t match those repeated on this site, but as my diagnosis was based on blood tests and x-rays I can only assume it is correct and I am a fortunate moderate sufferer.
The usual treatment from an Emergency GP to reduce the severity of this kind of flare up is 40mg Prednisolone daily for 5 days with total rest and by day 5 I’m usually able to function again and by day 7, go back to work.
It’s very hard explaining to a GP that despite taking what appear to be big, deep, wheeze free breathes, there seems to be no oxygen getting through to my body. The funniest diagnosis I had so far from an emergency GP was that it was all in my head and I was having a panic attack (touchy feely medical care, my arse).
It does get better XXXX and I wish you well.
Tue Feb 24, 2009 9:14 am
Well, I knew it was too good to last!
I picked up an infection last week, which has allowed my ABPA to kick off. So, I’m now on my fifth day off work, with one day left of erythromycin and then at the end of this week, an 8 week course of Nizarol (ketoconazole) to help fight off the nail fungus I’ve also picked up. Bugger, no drinks at all for a couple of months.
However the good news is we did pop down to London for the weekend to see a show which we booked yonks ago (a belated wedding present, 3rd anniversary this Whitsuntide half term). The show was excellent, yomping around London was knackering (we stayed out in Whitechapel and the tube was closed for essential maintenance) so I rested a lot. I can recommend “La Cage Aux Folles” with Graham Norton. I can’t stand the man but the performance was excellent.
Guess that ends the quiet weekend.
Wed Mar 25, 2009 8:24 pm
I also suffer Asper-tourettes syndrome and I too can be quite vocal about it (I can swear in several languages including Welsh).
The first time I had pains in my chest that were serious enough to distract me from driving, I still hadn’t been diagnosed with ABPA, so I went to visit my previous GP. I was then sent to hospital in a ambulance and had all kinds of wondrous experiences in the “may have had a heart attack” ward, including some wonderful stuff under my tongue(great for the higher than a kite experience), lots of oxygen (Darth Vader impressions don’t go down well with the busy nursing staff) and multiple injections. Unfortunately, I don’t do needles and have been known to faint (strapping ex-rugby player, not), so I didn’t enjoy that bit.
I hope you start feeling better soon, dude, and thanks to everyone on the site for your continuing support and help.
Wed Apr 8, 2009 8:07 pm
Another moment of clarity and understanding for me. I have re-read Carol at Tahoe’s email from October last regarding Plugs and the short comment regarding brain fog. WOW.The description regarding loss of words or forgetting what you were just about to do is so true. I had put my bad memory down to having to take Statins, but now I’m off them whilst I take a course of Nizarol, it’s obviously not them. I hadn’t connected “brain fog” with loosing words whilst speaking or losing a train of thought or action.
To be honest I am finding it a real pain, as it doesn’t impress clients, although I suppose I could dress in tweeds and pretend to be more eccentric than I already am.
Happy Easter to you all,
Thu Apr 16, 2009 11:40 am
in answer to your question, the pains in your chest are what XXXX & I have referred to as our Asper-tourettes moments (the pain is so sharp that it makes you swear, whether you want to or not). I get mine every few months and then cough up all kinds of muck (thick mucus, foamy mucus, slime monsters and other things I can’t describe). The down side is this usually causes my asthma to flare up.
Mon Apr 20, 2009 9:33 pm
I saw my consultant today and the good news is that my 3 month old blood test had an IgE less than 40, or normal, so the ‘Fun guy’ had gone to sleep for a while. Now, if only they can work out what made me ill for about, 10 days just over 6 weeks ago, I’ll be in cloud cuckoo land. Oh and yes I did have blood taken today for more tests, so I guess I’ll get the results back in November, when I next see my consultant.
Mon May 18, 2009 4:08 pm
I just thought I’d share my good news and give a little to hope to others. The latest results from my bloods have just been posted to me. My IgE is 100 and as I’ve had low to normal levels for the last two tests, my ABPA is said to be in remission (I will however continue to take my selection of drugs to keep it that way).
The down side is I have developed a nut allergy, so we will be reading the food labels from now on and being careful when we eat out.
Mon Nov 23, 2009 9:44 pm
It’s been an interesting day. Today was lung function test day 🙁 Peak and volume flow, followed by a double dose of salbutamol in a nebuliser, a nice sit down and cup of tea and then Peak and volume flow again to compare. The good news is that the nebuliser did seem to make a 10% difference to the results, which is good, particularly as I didn’t feel asthmatic at all. The bad news was the salbutamol muscle tremors and the freeing of the mucous lining my airways. Boy was that fun, coughing until I saw stars, giving me a blinding headache and generally wearing me out until I exhausted myself and went to sleep. So much for carrying onto work after the tests. Anyway, I’ve slept for a few hours now and whilst still physically tired, I’ve stopped shaking, which is shame for my wife because she wanted a cocktail (only joking).
The things we do for diagnosis.
Mon Nov 1, 2010 6:44 pm
I’m off to Wythenshawe for my last appointment (hopefully) with the Prof and his team on Wednesday afternoon at 16:00 in the New Heart Centre and then I will be referred back to my respiratory consultant at the local hospital.
Should any of you be there, please don’t be shy and introduce yourselves, I don’t bite (much) and would love to meet you.
Thu Nov 4, 2010 8:13 pm
Treatment for SAFS is the same as for ABPA, Sporanox (itraconazole) and if required Prednisolone to help fight off infections.
There is quite an interesting page on the Aspergillus website. At least now I have some idea about why I can’t breathe easily most of time. Hopefully, the Prof can sort out a course of treatment that will sort me out and allow me to get rid of my disabled badge 🙂
Thu Jan 27, 2011 11:27 am
Greetings one and all,
It’s been a while since I added a comment on the forum, things have been a little busy in my life.
I feel a little like Job at present. My younger sister passed away on 17/12/10 from her cancer, her funeral wasn’t until 5/1/11, we’re preparing for my 17 year old niece to live with us and continue her education and I had to have my old fat cat put down on Tuesday.
I’ve been off work this week as I’m having breathing difficulties. It looks like I’ve picked up a chest infection and although my chest is clear, I can’t breathe easily, so I am taking amoxicillin and 30g Prednisolone (which becomes a reducing dose on Saturday). My breakfast time pill intake is now at 11 pills.
I drove up to Wythenshawe yesterday for my out patients appointment with Prof Denning and the team. Wow, aren’t they great. I’d volunteered to give bloods for the research program so along with the regular blood tests, I gave another 14 ampoules. Unfortunately my quick sealing veins and tough middle aged superhero skin didn’t help much, and with the injection to my Gluteus maximus muscle, I’ve got 7 injection/blood sites in my arms, hands and bum; I have to say, today, I’m quite bruised.
Anyway long-term, it looks like the use of itraconazole may actually reduce the number of drugs I need to take to control my asthma. Ace!!
I can’t believe the difference it has made to my life in so short a time. Chip, you wouldn’t recognise me, I can hold conversations now. So thanks to the Prof and team for changing my diagnosis to SAFS, from the ABPA my respiratory consultant had given. And thanks very much for prescribing itraconazole.
Fri May 20, 2011 2:59 pm
forgetting words seems to be a common theme, although I’m pretty bad at remembering most things. I spoke to my respiratory consultant about it some time ago who suggested it was my age and the amount of information that my brain could hold. Well I’m 46 and as a Chartered Engineer, I’m at the age when most of us actually are deemed experienced in our work. Shame I can’t remember much 🙂
Tue Jun 28, 2011 10:13 pm
I regularly get sharp pains in my chest, normally on the upper right side. The really severe pains normally occur just before a chest infection floors me and it seems to be inflammation of the pleura in that area. The quickest relief I find is 400mg of Ibuprofen, followed with antibiotics and Prednisolone to beat the infection.
JB, Sandbach, UK