GAtherton

Margaret Griffiths

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My story – medical

I am 75 and I am writing this in the hope of encouraging new patients to believe that diagnoses which sound awful might not be as bad as they sound. So keep reading past the beginning.

Current diagnoses
ABPA and asthma (formerly included bronchiectasis, but this has disappeared from list)
Large granular lymphocytic leukaemia (results in neutropenia and low immunity)
Probable single vessel ischaemic disease.
and, on the way,: 2 sinus ops (Polyps and antroscopies), chronic cystitis and 2 attacks of pyelitis - kidney scan shows bifid ureter, a squint (obvious only to opticians, but I use only one eye at a time), two cataract ops, and hearing aids - and 3 healthy babies. My genes must be a bit odd, yet I have always recovered well.

Born 1937, wartime rationing of all kinds. Parents well, but both had allergies.
Tonsils removed at age 5 – then the fashion for any catarrhal child, even in the war! Made me worse not better, and missed most of first year’s schooling and long periods every winter until I was about 13.
I remember just 3 serious wheezy attacks as a child – never diagnosed. Coughed a lot every winter, but don’t remember anything coming up - perhaps children just swallow it all.

1955: work in an office, awful place, old gas heaters, no ventilation, almost everyone except me a chain smoker. Felt well, but now know first attack of ABPA was in 1956. Totally blocked nose and sinus; eventually consulted doctor who gave me some un-named white pills. Then one day I started to blow my nose – and blew and blew- a mass of sticky brown muck. All cleared within a couple of hours and I thought no more of it – until years later.

1962: We went to work in Nigeria (teaching). Based in a small town, very basic amenities by any Western standard; – paraffin fridge, calor gas cooker and oil lights, tap water not always available. Local ‘hospital’ just a clinic – very little equipment and just one doctor covering a very large area. Climate: 6 months very hot, wet, and humid, 6 months exceedingly dry and dusty – cool at night and very hot (100Fplus) by day. 1964 and 1966: birth of two sons – both well and breastfed for 12 months each. Beautiful country, lovely people, welcoming us as teachers they needed. All sounds idyllic.

But Independence had led to precarious government, which descended into violence – government coups, violence in the villages all around, and later the Biafran civil war – the stuff of night-mares. Told to leave home, and placed in house whose bedroom had large cracks in the wooden floorboards and an odd smell. We were sleeping over an old store-room full of a large colony of bats and their accumulated droppings!!

Biafran army retreated from our home area, we returned to home and school.. October 1967, 2nd baby aged 9 months developed tummy bug – good job I was still breastfeeding. I got tired, developed a cough – which got worse, and worse…… Did not realise how ill I was even though I was soon coughing non-stop for an hour or even two at a time, but nothing came up. No x-ray or blood tests available locally; Dr gave me asthma pills – didn’t help much.

Jan 1968: Returned to very cold UK where I quickly ran a fever; x-ray looked like pneumonia – or TB – or cancer…. In hospital a clever chest physician did bronchospy (with early rigid bronchoscope!), hooked out some brown muck – and was excited when lab diagnosed aspergillosis. Treatment: lying in PD position (head lower than body) and 15mg (I think) daily steroids. Also a green dye to be sprayed down my throat with a scent spray!!

Something worked – after 7 weeks of futile hours of coughing on my tipped up bed, I started to cough brown sticky plugs – long ropes of it, a beaker full in an afternoon when I was alone at home with no phone. At last I could breathe. Consultant appointment due in a couple of days – had nothing moved by then I would have been sent to Oxford for lung resection, now unnecessary. I was young (31) and quickly recovered to normal life.

Consultant warned me that Aspergillosis would recur, especially in later life, but I felt well, we settled, bought a house and had a third baby.

The rest of the story will be familiar to many who had ABPA so long ago. Kind and well-meaning GP had no experience of Aspergillosis, nor did the junior hospital doctors. I owe a great deal to the consultant who diagnosed it, but I did not get to see him very often. I caught all our children’s colds, and coughed and coughed. GP gave me antibiotic for every attack, but neither of us realised that I probably had ABPA flare-ups, so I got no steroids. I think doctors’ training in the 60’s and 70’s warned against over-prescription of steroids, also taught that reassuring the patient was important – but of course reassurance was useless when he did not know anything about ABPA. He was reluctant to give me steroids even when I thought I had a flare-up; in the very worst attack, a registrar at the hospital couldn’t find any sign on my x-ray, called me a ‘fraud’ and gave me a huge bottle of codeine linctus for my cough! On that occasion, I finally got the steroids by making a fuss, then after 10 days futile coughing, spent one whole evening coughing non-stop before I produced a huge plug (with intense pain), followed by a lot more fungal mass. I must have split a vein and coughed blood all the following day, as well as being very sore. My husband finally persuaded GP that I needed hospital - where they tested for all sorts of things like whooping cough! Only at 6 weeks check-up did registrar tell me the obvious - it had been ABPA! A positive test on the one bit I had coughed up at the beginning had been misfiled!
Such was the treatment by well-meaning and good doctors before they knew anything about ABPA, and had nothing written to refer to (nor did I).
Similarly, fungus in my sinus was not immediately recognised, but I was finally referred to a good ENT surgeon, who removed nasal polyps and opened up the sinuses – removing all sinus problems for good.
Youth, basic good health and lifestyle kept me going (though always very tired) until I asked for a second opinion and got referred to the Brompton in 1990. This transformed my life in some ways. Scan on first visit showed bronchiectasis, and plugs around my lungs. I was taught physio – breathing, and huffing - put on permanent steroids, and best of all, the report back to my GP proved that I had neither been hysterical nor imagining illness; I was at last understood, and could get appropriate treatment when I needed it. On daily prednisolone, the annual autumn and spring flare-ups largely disappeared, but every cold led to an acute flare-up.
1995: 3 successive virus infections. In-patient at Brompton – ciproxin and 40mg prednisolone, continued at home for several weeks. So weak I could hardly climb stairs or walk straight; strained both Achilles tendons (always take care when on ciproxin combined with high dose steroids); a friend took me out in a wheelchair; I wondered about my future.
1996: I was at last improving, able to walk again, and sleeping better. Routine appointment at the Brompton; registrar asked about general health and I reported a tummy bug that had taken a long time to clear up; immediate blood test. He phoned next morning – don’t worry but…
Superb haematologist at local hospital did a lot of tests – found a rare leukaemia (see top), which, she said, combined with the fairly rare ABPA, must be unique – yet I was feeling relatively well! Long discussion about possible treatment – all postponed as I felt well.
Since then I have to take any feverish infection seriously, and go into hospital for IV antibiotics if fever high (usually infections are in lungs, or in wounds in my tissue-thin skin). ABPA is not worse, but as I aged, I found the coughing traumatic. I had had to move from the Brompton back to Swindon in 2000. I finally got itraconazole in 2010 from a keen younger Consultant in the local hospital. This has made a huge difference – I still cough, but not so violently nor in such prolonged spells.
I have avoided crowds and public transport in winter ever since the 1995 illness, and amazingly at 75, I now have quite good quality of life. I get very tired and shaky, and have to pace myself both daily and weekly. Skin is very fragile, hair now thin, voice often croaky and sleep often poor. But I can still walk 4 miles or so on a good day, climb all our steep hills (very slowly) and generally enjoy life. Angina can be a nuisance, but I declined angiogram, afraid a vein might be punctured, or infection introduced. Very fortunate to still have my supportive husband and to enjoy simple things – we have not been abroad since return from Nigeria; very local holidays can be just as interesting.

For any interested in facts and figures:
IgE at last count: 11,000. RAST to aspergillosis 4. Neutrophils (the white blood cells most affected by the leukaemia) vary – as low as 0.3 a couple of years ago, and now around 1.0 (I think 2.5 is normal).

What made me ill? – tropical climate? stress of life surrounded by violence and civil war? bat droppings? – I guess I am predisposed genetically to get ABPA, but I also have ‘good’ genes from a very long-lived mother. Did the leukaemia come from all the scans and x-rays I’ve had? Or the result of the stress of the 1995 illness? I’ll never know. Current new patients can be grateful that gone are the days of a scent-spray full of green dye, useless x-rays, and doctors without the internet. The world has changed and I am very grateful for all the research which keeps me going, and to very many NHS staff for all their care.
What have I learned?
Stress is inevitable – avoid it when you can, or recognise and try to deal with it.
Take threatening symptoms seriously, but don’t panic. Always take medication prescribed –unless very good reason not to – then tell your medic.
Avoid all other infections when you can.
Keep away from massive presence of damp and mould, (like the compost heap) but don’t worry about the odd bit.
Make a friend of your GP – who can help you understand your problems and make important decisions.
Eat a healthy diet – plenty of fruit and veg, (I haven’t avoided any food).
When ill, I fend off depression by planning some useful activity each day, however small, and as soon as possible, walk – just as far as the next house, or the end of the Close, or as far as I can, doing a little more each day.

And good wishes to all who suffer – I’ve reached a happy 75 after all that – maybe you will too. 

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by GAtherton

MagStar

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My name is Maggie Murray from Christchurch, New Zealand. I have 3 beautiful grown daughters and I used to work with young offenders here in Christchurch. However my life dramatically changed when I was exposed to Aspergillus Fumigatus through unfiltered air conditioning/heating in our new prison facilities. It was such a concentration of fungal spores after a farmer doused his paddocks with untreated manure! This burnt out my face, throat and lungs.

I actually consider myself lucky in the sense that I realised what was happening at the time, as could feel the prickling sensation of something infiltrating my system as it burnt me. However I did not know what the culprit was until much later.

The diagnoses took 18 months and was a hard fought battle indeed with the establishment. I was hospitalised 4 months after contamination and was nearly dead! I could'nt walk as had lost all co-ordination of my legs, I couldn't stand bright lights and my body was in full on flight/fight as my Adrenals were so over worked. Before being hospitalised I had a few courses of Anti biotic's which only dampened what was happening! In reality this was making the fungal side of things worse.

My specialists here in Christchurch were bull headed and even though I had many fungul balls in Sinuses, and fungal plugs from lungs which all tested heavy growth Aspergillus Fumigatus, they were adamant I did not have an Aspergillus disease!

I did not accept this as know my body and knew what had happened to me, so instead I challenged them to the point of throwing tantrums if I needed to be heard. I finally saw a Allergist/Immunologist who tested me for many things and "Hello" I reacted severely to Aspergillus Fumigatus. He sent a stern message to my ENT and Respiratory specialists which finally got the ball rolling.

I had one sinus surgery which didn't help much! I had told my ENT specialist that I could feel stuff way in the back so eventually after I paid for a deep sinus scan it revealed the Sphenoid area was clogged up, and another surgery was performed.

The flow on effect of having this illness is, Fibromyalgia, Trigeminal Neuralgia, Chronic fatigue, and exhausted adrenals almost like have Post Traumatic Stress syndrone.

I feel quite vindicated after reading in the latest Aspergillus newsletter about the enzyme that initiates stress in the body for the fungus to survive. So many battles over my adrenals and I was made to feel like a crackpot.

I originally went on Sporonox/Prednisone plus Tegratol for the Trigeminal nerve and Tramadol for pain. I detest taking all these medications so slowly weaned myself off all except the Tegratol.

I spent a fortune on Herbal medications and found 3 amazing Intergrative practitioners who I see weekly. I have Chinese Acupuncture, Healing touch Lymphatic drainage therapy and see a Natruopath. I am determined to stay off the hard drugs but every now and again I have an angry flare up and relent and go back on meds short term. My body however does handle it a lot better now. I try hard to keep an alkaline body and use remedies that remove the toxins as this is what makes me feel the worse, thoroughly poisoned actually.

My employers paid my salary for 4 years while I was off work but that all came to an end this May! I am not sure what I will do in the future.
My specialists did all apologise to me eventually:)

I am currently writing an article on Aspergillus from a Patients perpective which I hope to get published in a reputable well read magazine.

I am what my family call a Mold detector and I cannot believe how many places I visit which reek of mold. I believe many people here in Christchurch suufer from Aspergillus disease as so many damp homes, all with heat pumps which don't get cleaned enough, then of course the fatal thing of massive amounts of processed sugary ,yeast ridden foods. Wow what a combination! I hope to enlighten as many people as I can:)

So that's me for now:)

Cheers Maggie

11/11/2011 

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by GAtherton

M. Scott Johansen

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ABPA & prednisolone

I`m 71 year old, male, living south/east in Norway .

Since 7 years old I got asthma, which developed later on to chronic obstructive pulmonary lung disease (copd), and have therefore used a lot of prednisolon during the years combined with antibiotics. In 1993 I got a lung cancer diagnosis, and by surgery, my right lower part of the lung was removed. I was told after the surgery that it was a “good one”.

Years past and every winter I got 3 to 4 lung infections, treated with pred. and antibiotics. However abpa was not, to my knowledge, showing up before 2004, and I did not know anything about it as I believed that my surgery I 1993 was just a “good tumor”. In 2004 I got real seek due to lung infection which none drug could cure. Again, after infinite number of bronchoscopy, I was told that it was suspected lung cancer. Just before surgery however, one doctor stopped it, as he suspected some other reason. Going back to result in 1993 it was confirmed that indeed it was aspergillus. Later on the doctors admitted that in 1993 their knowledge of aspergillus were rather low as it was – and still is – a rather rare illness in Norway( or maybe under diagnostics.) The fact is that I`m the only patient at one of the main university hospital in Oslo, having flare up every year. I was, as most of you, treated with pred. and sporanox that helped for the time being. The strange thing is that since then, once a year, I have only one flare up of aspergillus – and at the same time; end Mai primo June. Why? Don`know, but it is springtime/early summer, whatever that means as for aspegillus. But surely something is in the air at this time of the year. It normally takes 5 to 7 weeks to get rid of it with help of pred. and Sporanox. Starting with 30mg pred. for 2 weeks, and then reducing 5mg./week. Sporanox 400mg/day for 5 to 7 weeks.

Fortunately, I have a doctor with a small lab, where I can measure infection level (crp) and IgE level whenever I wish. My normal IgE is rather high, pending around 1300 when condition is good. Max. has been12000 and lowest 975 measured around 5 times each year the last 8 years. When flare up, IgE level increase to around 6000 within 10 days. Infection level is very low (around 15-20) so it difficult to diagnosis due this measurement except that breathing gets harder. Therefore, IgE level seems to me to be perfect to managing the level of Aspergillus. Sure, doctors have further advanced measurements to get the whole picture, but for me the IgE level is accurate and understandable. As for what is normal IgE level there are many opinions, but most experts I have asked put a limit on max. 1500. Ideal is under 100!!
Prednisolen;
As mentioned I have used a lot of pred, and in the latest years I have started to pay the bill!
2006: within a few weeks my view got rather foggy, and I was diagnosed to have cataracts, which was cured by laser surgery. I was told that excessive use of pred. speed up this illness.
2008: on a brisk walking on a nice early morning in Spain, I suddenly lost control of my feet, and fell over. When finally entering a hospital (recommended) it was diagnosed to be Achille failure as the Achilles tendons on both legs were torn. Extremely rare that it should happen in both legs at the same time! The doctors first question was; are you on pred? Oh yes indeed! 4 weeks in a wheelchair gives you some perspective of another life. The flight back home was a nightmare.
2010: late summer I got very tired and exhausted. After endless examinations it was stated that I got adrenal failure (secondary failure), which in many (maybe most) cases is a result of long time use of pred. As sure many of you known when adrenal failure, more or less none cortisol is produced. Cortisol is necessary to cope with daily stress. Countermeasure is, ironically, 25mg/day. cortison (which is “equal” with 5mg. pred.) The production of cortisol is managed by the pituitary (a small “peanut” in your brain). When long time use of pred., the signal to the adrenal gets to high, and after a while the adrenal start sleeping, reducing or stopping the production of cortisol. When that happens you will feel very tired and completely out of normal behaviour.
2011: In connection with adrenal failure, doctors also suspected low bone density. Test was done,( special X-ray) and yes, I was low into the red scale and told that I got osteoporosis. Suspected reason; using pred. on a high level for a long time. I have to add the fact that osteoporosis is more common in Scandinavia then in the rest of Europe, reasons unknown. Countermeasures; A daily shot of the drug Forsteo, every day for 2 year which will to a certain degree rebuild my bone density. This treatment can only be provided once in your lifetime. Same year they also took vitamin tests and I was told that vitamin D was none existent. This is claimed to be very common for older people and for sure it don’t help your bone density.( I believe Mr Graham Atherton once told us about this matter, combined with abpa, on this site ). Inthe report it was concluded; ”. In other words most patients who had ABPA also had lower levels of vitamin D.”
I was put on D-Forte (30.000 IE) a week for 4 weeks, and then one D-Forte every 3 week as maintenance. Unfortunately, I started too late with Forsteo, as I already experienced a compression fracture in my back in last October, fortunately rather high up (H7). Though rather painful.

Conclusion;
Of course may age is a factor in this matter, but I regret all the times when told by the doctors when having lung infection; “yes take antibiotics and add pred. also – just in case!!!!!”
Lately (last year), I have reduced pred. with 50%, and guess what, antibiotics does the job in case of just my “normal” lung infections. However, when flare up of aspergillus I just have to use pred. as Sporanox do not work alone. We are all not the same person, and one case is none case as doctors put it, but to my experience doctors generally are too conservative and the more expert, the more they tend to only concentrate on your lung problem or whatever illness you suffer from. They don`t want any backfire in their area.
I have asked the doctors for replacement drug for pred. but so far none positive response. Either they state that they have none experience with “new drugs” or don’t want to speculate in new drugs as old and proven pred. do the job.
It is not my intention to frighten anybody but just to consider the amount of pred. and try to find your own limits. But never take it “just in case”, and if you find substitute it might be a better solution. And tell us on this site if you have tried replacement drug which seems to help. I have noted some of you who have tried Xolair and I think it would be very interesting if all of you tell us about your experience as prednisolen is a wonder drug, but it has too many dark sides. And to my knowledge 90% on this site use pred. so the importance to find substitute drug should be rather important for all of us.

I`m now fed up with the winter season and will go to Spain for 6 weeks, starting 22.febr. – and get some D vitamin the natural way.

Thank you for reading and excuse my misspelling and other mistakes, as English language is my second (or maybe third) language.

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by GAtherton

Lisa McNeil

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In November 2003 I suffered 2 ectopic pregnancies within weeks of each other, I had been pregnant with twins. The first operation bled the baby that was trapped in my tube (they were trying to save the tube) but unfortunately there was another baby in there and 10 days later it ruptured my fallopian tube and I was rushed into emergency theatre. I left hospital with a terrible chest infection and on antibiotics. After months of a repeat of what happened in 1997 I was again diagnosed with bronchiestasis, this times in both lungs - Nightmare!! It was April 2004. The consultant had also detected something wrong with my heart and after more tests I was also diagnosed with cardiomyopathy. I decided to reduce my hours at work to 30 a week to try to help with my energy levels and help keep me well. Still, I spent the next 6 years in and out of hospital, taking lots of time off work sick and swallowing many many antibiotics. I saw the consultant every 6 months and he asked me the same questions every time. "How much sputum are you bringing up?"," what colour is it?", "How many lots of antibiotics have you had since I last saw you?" and then he sent me on my way.

After a particularly bad winter, I had spent virtually the whole of January 2010 in bed and I was thoroughly fed up and feeling very lonely. Whilst my family were brilliant and very supportive they really didn't understand what I was going through. I decided to look for others with my condition and found Bronciestasis R Us on line. Within minutes of registering a member had contacted me to welcome me aboard and offer me some advice which turned out to be the best advice I have ever been given. He told me that the key to managing this condition was to make sure you had the right consultant. I searched on a database and after bringing up 183 possible matches, Prof Denning was at the top. I asked my GP for a referral and within a week Prof D had agreed to see me. 3 weeks later just before Easter in 2010 I was in front of this wonderful man clutching my medical records and X-rays under one arm and shaking his hand with the other. Anyone who knows this man and his team will know what the next few weeks were like. He took over 17 blood samples, did scans and x-rays, made me cough regularly into sputum pots and got a Dr in Leicester to stick something painful up my nose and scrape away some brain cells!! Within a month he told me I had a mannose binding lectin deficiency (immune system) and aspergillos. He started me on a daily dose of azithromycn and itraconzole. I was seeing him monthly and after a couple of months he changed the itraconzole to sporanox. I have never looked back. The change in me was almost immediate. I had more energy, no infections and felt great. For the first time in years my husband and I could plan things without feeling worried that they might never happen. I stopped work as I felt enough was enough and if I was going to have any bad days I wanted to make sure the good ones were spent doing things I wanted to and enjoying myself. My husband is an angel.

We cleared out the loft in October 2011 and I ended up in hospital in terrible pain. I was put on morphine and doxi and stayed there for a week. I have been well since.............. 

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by GAtherton

Kimberley Wendzel

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July 16, 2013

Hi I am Kimberly and here is my journey which has just began. Please help me with whatever experience you have because I only know what I have read.

In January during my annual check-up my blood work showed that I had hypothyroidism, which ment that my thyroid was not working. I was put on medication syntheroid 50 and was to return for blood tests in 2 months. During my next visit, April, my blood work showed that my tsh levels were normal but I still felt very bad. My doctor upped my synthroid to 75 at that time. Some months ago I began having shortness of breath and vision trouble I also was breathless at work so I quit my morning job because I would be out of breath for hours and couldn't lift people anymore I thought this was due to my thyroid.

At my appointment in the beginning of June I told my provider that I was out of breath and dehydrated, she said that things were looking good and to give the medication some time and symptoms should subside, I quit drinking pop, to drink only water, kool-aid and juice. This did not help at all and I got what I thought was thrush on my tongue, so I went back in to my provider I also told her that I was breathless.

She thought that my medications weren't reacting well together and so I was to wean off of my celexa, an antidepressant she also cultured my tongue and did not think I had thrush.

The nurse called after about a week stating that I did not have thrush I thought that was the end of things believing that when I was off of the celexa the symptoms would go away. So my provider called last Thursday and said that I have mold on my tongue and that this was found when the culture was allowed to grow a bit more.

I went to the pharmacy to get the prescription for the vfend and found that I couldn't afford it in this lifetime. So I started looking on line for alternatives, they are all expensive too.

We are applying to Pfizer for assistance. I have learned that I probably contracted this aspergillosis when my kitchen flooded and the floors needed to be replaced the basement flooded also and everything was tore out, then huge fans were in the home to dry up the water. So yesterday I had and xray of my lungs because I want to know where this mold has set up camp in my body but the radiologist didn't see it.

I go in tomarrow for an appointment hopefully we will know where to go from here. I feel very ill. 

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by GAtherton

Kay A.

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I’m a 60 year old gal, diagnosed with asthma since age 2 and ABPA since age 45. I’m pretty sure the ABPA dates back to age 30, though, because that’s when I started having recurrent atelectasis, once or twice a year. Usually I could clear it by myself, with some PT/chest percussion, but every few years I’d get a tenacious plug and have to go for a bronchoscopy.

I had severe asthma as a child, and at age 14 I came close to leaving this world - that attack resulted in a tracheostomy and bi-lateral pneumothorax, scars that remind myself that things can go south in a hurry. I improved with age, but was still hospitalized once every few years with asthma .

Then, when I turned 40, I began fifteen absolutely asthma and trouble-free years. I used my asthma control inhalers and nothing else but a multivitamin. I took up running, biking, and even did a few short triathlons. I had been thriving in my new home in the U.S. Pacific Northwest, but then, in 2005, I ran in to the “perfect storm” of lung disease. I contracted pertussis (yes, whooping cough at my age!); got overexposed to mold at a remote fishing camp, which flared my ABPA; then somehow contracted an atypical mycobacterial infection (m. abscessus). On top of that, I gave myself a hiatal hernia while coughing my brains out with pertussis, which apparently gave me GERD. I would come down with some sort of pneumonia every 60-90 days, although in between I felt almost normal except for a severe, annoying cough. My pulmonologist believed Sporanox would help the ABPA, but after 9 months on 200 - 400mg doses with no results, we gave it up. It took three years of seeking experts, and a few consultations at the National Jewish lung clinic in Denver, but now I’m back to baseline and biking, hiking, and skiing again. My pulmonary function test results are stable, but low for my age, and I’ll always be under treatment.

I did 4 months of IV antibiotics and 10 months of oral antibiotics for the mycobacterial infection, which luckily has not recurred. However, my IGE levels reached the 1300 range with the ABPA flare. My local allergist, as well as the docs at National Jewish, recommended trying Xolair for the ABPA/asthma combination. I started it in late 2007, when my IGE was again low enough for me to qualify, and I’ve been on the maximum dose (375mg once every two weeks) since then. I've only had to have 1 prednisone burst since, and I'm back to my normal healthy self. I still cough stuff up most every day (I guess this part is a life sentence), but it's minimal and easy to live with compared with that hellish three years.

Because I was treated with the IV antibiotics and the Xolair at the same time, nobody is sure if my main problem during that three years was ABPA or the mycobacterial infection. In spring of 2011, my local allergist agreed to try backing off the Xolair, decreasing it to 375 mg every four weeks. Guess we proved something, because after 6 weeks, I started coughing up yellow junk and ended up with a severe case of atelectasis that eventually necessitated a bronchoscopy. Oddly enough, though, the pathology from the bronch came back negative for everything, including aspergillus.

I've experienced no side effects from the Xolair at all, except for a lighter wallet. It is quite expensive - for my dosage, the drug alone costs $45,000 USD /year and my allergist charges each time for the administration. I have good insurance, thankfully, but I still end up paying $4000 USD/year out-of-pocket.

In any case, I feel great for now, and I love my outdoors-oriented life. I’m really grateful to medical science for all of the advances over the years - the combined steroid/LABA asthma control inhalers made a huge difference for me, and the high-tech recombinant DNA drug (Xolair) is nothing short of miraculous.

-Kay 

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by GAtherton

John Bradley

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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

Hi,

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.

Kind Regards,

Tue Sep 30, 2008 7:21 am

Hey XXXX,

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 :-)

Kind Regards,

Fri Oct 3, 2008 7:37 pm

Hey XXXX,

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 :-)

Kind Regards,

Tue Oct 14, 2008 7:28 am

Hi XXXX,

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.

Kind Regards,

Tue Feb 24, 2009 9:14 am

Hi Folks,

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.

Kind Regards,

Wed Mar 25, 2009 8:24 pm

Thanks XXXX,

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.

Kind Regards,

Wed Apr 8, 2009 8:07 pm

Dear All,

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,

Kind Regards,

Thu Apr 16, 2009 11:40 am

Hey XXXX,

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.

Kind Regards,

Mon Apr 20, 2009 9:33 pm

Hi all,

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.

Kind Regards,

Mon May 18, 2009 4:08 pm

Dear All,

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.

Kind Regards,

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.

Kind Regards,

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.

Kind Regards,

Thu Nov 4, 2010 8:13 pm

Hi XXXX,

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 :-)

Kind Regards,

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.

Kind Regards,

Fri May 20, 2011 2:59 pm

Hi all,

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 :-)

Kind Regards,

Tue Jun 28, 2011 10:13 pm

Hi XXXX,

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.

Kind Regards,

JB, Sandbach, UK

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by GAtherton

Joan Becker - Xolair

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This is my story about Xolair. I have been on it for about 6 years.

In 2003 I was seen at National Jewish in Denver. At the time it was suggested that perhaps it might help with my Aspergillus even though that is an off label use. My pulmonologist was willing to try it.

I was diagnosed with Aspergillus Niger in 2002. My particular problem was constant severe plugging of my lungs which resulted in very frequent bronchoscopes,sometimes as frequent as monthly and occasionally twice a month.Nothing was effective in getting rid of the plugs except for the "bronchs".

I was on Sporanox, prednisone, hypertonic saline nebulizing. Tried the Vest and daily PD as an outpatient

We started the Xolair in April of 05. I receive two injections,150 mg. in each arm, monthly
I must admit that I didn't think it was doing anything but I stayed with it. Never had any side effects. I continued to have to have "bronchs" ,however not as frequently as before. Really didn't think of that in association with the Xolair.

My last bronch was in Jan 09. It was like a miracle to have been able to go so long without one. Both my MD and myself attribute it to the Xolair. I would say that it took a while for it to "kick in".maybe 3 years.

In addition, I have always been allergic to grasses, molds and trees.Have always received allergy shots for the grasses and trees. The allergy seasons have been bad. Last August my allergist retested me and I had no,absolutely not one, reaction to any of the tests. Can I also attribute that to the Xolair? I don't know.

I have been fortunate that Xolair seems to have have significantly changed the course of my disease.
I hope it continues.I still am on a steroid inhaler but we have stopped the Sporanox as a trial.We shall see.

Joan Becker 

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by GAtherton