I'M SCARED!... Aspergillus Fumigatus?

[ClockworkOrange]

Spent the last 24 hours looking on the internet and getting extremely worried and I suppose scared. :(

Eighteen months I was diagnosed with COPD (chronic obstructive pulmonary disease).

The only time it has effected me is when I have had a chest infection. The only medication I have been taking reguarly is Seretide 125 two puffs twice a day.

Had to go back to see my consultant at hospital and after last blood test, he was pleased to tell me I did not have an allergy to birds but the blood test had shown up my reading was very high on Aspergillus Fumigatus!

So, yesteday I started taking Prednisolone 10 mg and Itraconazole 100 mg in the morning. Plus the obligatory Salbutamol and Seretide. I am also to be put on a Bone Protector...............sounds like armour for riding my bike! :rolleyes:

HOWEVER, despite I thought I was on a relatively low dose of Prednisolone I am so worried about the side effects, facial hair, Moon Face, edema in my legs and a hump on my back and that's on a good day!..............aaaaaaaaaaaaaargh!

Is this rare, can anybody put my mind at rest with any of the above.

Clock.......................fed up cos still not well enough to ride!

[OakLeaf]

Did the doctor say you're allergic to aspergillus (very common, it's a pervasive mold), or that you're infected with it? What blood tests did they do? Did he lead you to believe that you'll need to be on Prednisolone for a long time?

[alpinerabbit]

I think therapy for aspergilloses is in the range of weeks.
I'm pretty sure the serious side effects of corticosteroids only come over the long term.

But sheesh! How on earth! I hope you are being taken care off and that this clears up asap.

[ClockworkOrange]

No, I didn't make things very clear, I kid you not, I am so worried about the outcome.

Anyway, the diagnosis has now changed from COPD to asthma and he said that this fungus thing is in the airways, he basically described it as green sticky blobs that stick to the sides?

I have to have a blood test in 4 weeks and he has written down 'Asthma and aspergillus infection' The blood test I suppose is just routine, it's has boxes ticked by Renal, Liver and FBC.

Something else I forgot to mention, I have been told I am to be on them between 6 months to 1 year.

Clock

[PamNY]

Can you talk to a pharmacist about the drugs? I don't know how your health care system differs from ours, but I have found them to be really helpful. Best wishes to you; I hope all goes well.

Pam

[Duck on Wheels]

Hi Clock! Try not to worry too much about the Prednisone. Yes, there can be side effects, but one of them is a feeling of extra energy :) Speaking as someone who's been on high doses for long periods of time, the side effects do go away and that energy boost one is missed when it goes. :o

[spindizzy]

Your dose of corticosteroid is not a large one -provided you are only taking it once a day. You should probably protect your bones though, Vit D and Calcium.

[Zen]

I am also to be put on a Bone Protector...............sounds like armour for riding my bike! :rolleyes:



Sounds like she's been prescribed Boniva or something along those lines.

[ClockworkOrange]

Thanks for all the useful tips.

I like the sound of having more energy!

Am so trying to eat better foods, am even enjoying sardines for my lunch, I believe that is a good source of Vit D............plus sunbathing. :D

I am waiting to be told what Bone Protector I am to have, still not happy about that. I read something 'The Delusion of Bone Drugs'!

If I end up with a full beard, a Moon Face, humpity back and oedema in my legs making them fatter than what they are already and it is only for a year BUT I do not get this awful shortness of breath, then let's go for it! :rolleyes:

Clock......................the bells, the bells.....Long Chaney, eat ya heart out!

[bmccasland]

Clock - I was on Prednisone therapy after my allergic reaction to something I ate (squid or octapus or squid ink). I didn't notice any "extra energy" - what I noticed was I was figidty. Didn't help that part of the time I was at a conference, sitting in lectures most of the day. I walked down to the nearest pharmacy to ask the local pharmacist if I was going insane or was it a side effect to the Prednisone. She reassured me that my sanity was safe, it was the drugs, and that once I was off them, I'd quit being so twitchy. I suppose if I was home, and had access to my bike, it would have been better. It certainly didn't help that there were raging forest fires in the area, so I couldn't exercise outside (asthmatic lungs do not like smoke filled valleys). I was only on Prednisone for a two weeks, so maybe over time I would have gotten used to the side effect, but it drove me nuts sitting in the hotel conference facilities.

At home, where you could take breaks, or go for a walk or ride, you could probably cope better than I was able to - captive in the conference. I didn't notice the side effects nearly as much on field trip days - hiking to look at stream restoration sites.

Good luck.

[spindizzy]

If you're only on pred one once a day- better to take it in the morning. Parents of kids with asthma who are having an exacerbation always complain how "hyper" it makes their kids.

[ms1]

I've been on Prednisone many times for an arthritis problem. Long term is definitely a problem and that's where the permanent side effects that you are reading about come in.

For short term use, there are some side effects, but the important thing is that they go away once you are off the medication.

Everyone is different, but for me, the worst side effect is nervous energy, but not the good kind of energy that one of the posters discussed. After about a week or two, I have trouble sleeping at night and am uncharacteristically sensitive, much like PMS. This is very unpleasant, but it goes away once I'm off the medication.

Long term use is totally different.

I hope that helps.

[ClockworkOrange]

Bit of an update.

Well, 2 weeks into taking the medication and some of the odd feelings have more or less gone, the worst thing was the awful lethargy. Oh yes, and I have got my hot flushes back again......aaaaaaaargh! I have also been given Alendronic Acid (bone protector) which I only take once a week and a supplement of vitamin D3.

No idea about the side effects, if I am to be on them for a year, not sure how it will go, maybe riding my bike lots, will help me?

After hours of searching the internet for straightforward information, I came across a superb Forum, http://uk.groups.yahoo.com/group/AspergillusSupport/

At least this explains it in simple terms.

"Unfortunately, as of right now, Aspergillus disease, also called Allergic Broncho Pulmonary Aspergillosis (ABPA) is for ever. There is no cure. What it ends up is a big allergy to Aspergillus and yet the Aspergillus itself has the ability to grow inside your lungs, so you end up allergic to yourself!

The only way to handle it is to keep your lungs as dry as possible so that the Aspergillus won't grow. Some people can have one episode and then go for a long time without having a flare up. Others have flare ups often. A lot of us on this site take Soprano (itraconazole) and will continue to take it for life.

You can try to build up your immunity, etc. but how to make yourself not react to Aspergillus is a problem and it appears once your body no longer defends itself against the Aspergillus it encounters, it is unable to do so ever and also the drug treatment does not necessarily kill of all the Aspergillus in your system but rather works to stop it from taking up nutrients, thereby starving it. But Aspergillus spores, instead of then dying, sometimes just go dormant until it feels the conditions are right and then it just starts growing again.

So that is why a lot of us know we will be taking an antifungal for life.

HEY, I'M SORRY BUT...........two fingers up to it, it's not going to stop me riding my bike!!! ;)

I have started pushing myself to ride each day, one week on and I have some how managed to reach 8 miles. THAT'S what is going to keep me going, jumping on my faithful old Orange! I know it is not much but I am aiming to do an extra mile each day.

Clock

[cylegoddess]

* miles is goood honey!
I usually do about 5 when I have chronic fatigue, myself or whatever I can manage.
As someone put it to m:De( cant recall) what matters ,is that YOU ARE ON YOUR BIKE!

[OakLeaf]

Hang in there gal. From the reading I was doing, I was really hoping that ABPA was what you had, rather than an aspergilloma. Glad you're feeling well enough to do a little riding.

Since this came up during allergy testing, are you getting treatment and doing avoidance for other allergies? It seems to me that anything you can do to strengthen your immune system and avoid exposure to fungi should help. Obviously you're off alcohol anyway, with taking the antifungal, but did they talk to you about eliminating cheeses, yeasted breads, vinegars, fruit products other than scrubbed or peeled fresh fruits, fermented soy products, etc., from your diet? Barrier covers for your mattresses, sofas and pillows?

You might also look into a Traditional Chinese Medicine approach to strengthening your immune system.

Hope you start feeling better soon. ((((((Clock))))))

[bmccasland]

Hang in there Clock!

Would moving to a desert (or is it dessert? :D ) be helpful? Let's see, one is very dry and sandy, the other has lots of sugar...

Just wondering if your lungs would be happier in a more arid environment.

Meanwhile keep on riding, and here's to more good days with happy lungs than days with unhappy lungs.

[snapdragen]

Oh clock, I'm sorry you're going through this. I went to http://www.aspergillus.org.uk and read a bit. It sounds like eventually you will get stabilized; hopefully you'll be able to get down to a low dose of prednisone.

Take care!

[ClockworkOrange]

All comments duly noted, lots of helpful advice. :)

BUT I GOTTA SHARE WITH YOU............... only seven days on and I have clocked up 48 miles!

I was seriously getting concerned I would not be fit enough to ride in the London Bikeathon on the 19 July but that should be no problem.

On another thread, some helpful TE member mentioned an extremely good book to get Nancy Clark's Sports Nutrition Guidebook. I tracked down a used copy on Amazon for only $6.84 and it's brilliant also in superb condition. No, I am not a sports person as such but it explains everything so well for me. In all honesty, my knowledge of all that sort of thing is crap, so I now read this book making copious notes. :rolleyes:

It's funny how being ill can make you better??????

Clock

[jesvetmed]

Clock: Sorry you are going through this, but I love your attitude.
I'd say do the best you can with your nutrition, and keep exercising as much as you can.

I'd add in Omega 3/6 Fatty acids for sure, if you don't already. Excellent for the immune system, and helps with allergic stuff nicely over the long term.

I wish you the best and congrats on the 48 miles!!! Keep at it.

[ClockworkOrange]

Clock: Sorry you are going through this, but I love your attitude.
I'd say do the best you can with your nutrition, and keep exercising as much as you can.

I'd add in Omega 3/6 Fatty acids for sure, if you don't already. Excellent for the immune system, and helps with allergic stuff nicely over the long term.

I wish you the best and congrats on the 48 miles!!! Keep at it.

What a lovely reply, cheers.

Well, thanks to my book I have checked out Omega 3 and I am getting plenty of that, thanks to my daily tin of sardines............think I will be growing gills and fins soon...............ooops! http://farm4.static.flickr.com/3627/3604905206_0a6c8e8f8d_o.jpg

Omega 6 I suspect I get from most things I eat, so all is good. It does however, reiterate how important to eat my sardines.

Clock

[cylegoddess]

See, oakleaf and I are right on the allergie thingo. Blood test is best way.
Im so glad I got mine when I was ill. If it wasnt for those huge changes, Id still be REALLY ill, not just ill on and off.:o
Yes, I would say 48 km a week...IS ON YOUR BIKE!!:D

[ClockworkOrange]

See, oakleaf and I are right on the allergie thingo. Blood test is best way.
Im so glad I got mine when I was ill. If it wasnt for those huge changes, Id still be REALLY ill, not just ill on and off.:o
Yes, I would say 48 km a week...IS ON YOUR BIKE!!:D

Hiyeeee

Now c'mon my Ozzie mate, don't disrespect my distance, it's 48 miles or 77.25 km..............phew! :D

You are so right, if they had not done this particular blood test, I would still be struggling.

Three weeks today on meds and everything has settled down, especially the spaced out feeling. Suddenly discovered I so like cottage cheese, plain probiotic yogurt and my newest surprise is sweet potatoes...........yum! Then the naughtier things like dried apricots and all sorts of nuts, ummmm, meant to be in moderation. ;)


Clock

[OakLeaf]

Suddenly discovered I so like cottage cheese, plain probiotic yogurt and my newest surprise is sweet potatoes...........yum! Then the naughtier things like dried apricots and all sorts of nuts, ummmm, meant to be in moderation. ;)


Clock

Okay, I was going to spare you this story, but since you mention it...

One of my dogs had to take Prednisolone for an auto-immune blood disorder.

All her life she had a very sluggish metabolism, was hungry all the time and had to be on a pretty strict diet.

When we put her on Prednisolone, she was so hungry that she used to sit out on the porch at night and eat June bugs.

If you start getting an appetite for June bugs, talk to your doctor immediately. :D

[ClockworkOrange]

I have not laughed so much in a while.

OK, as you know, when somebody adds to a thread, we receive an email notification, so, I just logged off from here and noticed I had a new email.

Clicked on it and it opened half way down to read:

................. on Prednisolone, she was so hungry that she used to sit out on the porch at night and eat June bugs. :eek::eek::eek:

Phew, was I relieved to realise it was a dog, I was beginning to get slightly worried. :D

Clock

[cylegoddess]

LOL!!!!!!!!!!!!!!!!!!
If you get that hungry, it may be like post anorexia. ( you want to make up for lost time or something) .
Carrots,raw carrots, munchy yum. Celery, green apples, non nom nom!
Eat them all day( I like to eat when I m bored, bad habit.)

But 77 mile, WOWEEEE!!!! Your like a goddess!!! I want to be you!
Thats like so cool:)

and I think June bugs dont have many calories( the poor dog!!):D

[Mistie]

I know a guy who has a platlet problem and goes on prednisone about 6 month out of a year. He went on them in April of last year and I didn't notice anything until we went back to school in September. He had that moon face, but he didn't gain much weight (he was on a low dose). He did tell me he had a ton of energy (soccer coach) and felt the best he had ever felt. After he took his last dose in November, it took about 1-2 weeks and he looked completely normal. I also have a young friend who takes a low dose of pred. for rheumatoid arth. She doen't have many side effects, except energy. I hope you get better soon!

[ClockworkOrange]

When I first started this thread, nearly 8 months ago I was scared but as time went on, I did not struggle with the medication too much.

Since November I have been tapering down, nobody warned me how hard that was going to be.

I started getting awful aches and pains in all my joints, putting my arms above my head was agony but that is all easing up.

Have not been on my bike properly for about 6 weeks and just as I felt fit enough, we have snow..........apparently the UK are having the worst winter for some 50 years!

Anybody else going on Prednisolone, just be wary of when you have to taper off the stuff, it MUST be very gradual.

On the funnier side, I thought I would share these Prednisone T-shirts with you.

http://i7.photobucket.com/albums/y272/Missbe/predforTE-2.jpg

This is the slogan on the first T-shirt. "Prednisone. The all the time eating, shaking, bone thinning, weight gaining, b*tch making, so you can never sleep again medicine"

Thankfully, I am getting back to normal.............well, sort of normal.

Clock

[tulip]

Clock, I hope your health continues to improve! Those t-shirts are very funny for those of us who have experienced prednisone. I was on it when I was in high school--what a time to get fat, mean, and scaly (my skin got sooo dry!) I had to quit the varsity basketball team and the following soccer season was terrible (I had been a very good soccer player and had planned to play in college, but prednisone took care of that, too!) Fortunately, I was on it for only a few months, but that was bad enough.

Best to you!

[lo123]

Anybody else going on Prednisolone, just be wary of when you have to taper off the stuff, it MUST be very gradual.


That's an understatement! I've been on low dose prednisone for just under 2 years. The stuff's a beast. Took me a year to drop from 10mg to 5mg a day. I can't seem to get below 5mg for more than a week or two before my arthritis flares uncontrollably :(

I need one of those shirts! Glad you're tapering off. Good luck!

[OakLeaf]

My dad's been tapering for three years, by 0.5 mg per month. He's down to 1.5 mg/day. Any faster gave him all kinds of trouble.

[ClockworkOrange]

Thank goodness I popped onto the site this evening.

I was beginning to think it was me, last week gone down from 2mg every 2 days to 1 mg on Thursday and all the aches and pains and spots at my age. :eek:

Half of me is so excited to get back into cycling, rode 3 miles today. :D Am currently sorting out our Team for this Years London Bikeathon but deep down I don't feel up to any of it.

Am so pleased to have read your recent posts, I am getting there, just a little bit longer.

Gotta be OK, 'cos I have set myself a target of our Team raising over £10,000 for Leukaemia Research.......I guess we all have to have our little pipe dreams. :rolleyes:

My thanks again.

Clock

[ClockworkOrange]

So, I thought finally, after the last Prednisolone tablet that would be it but all the withdrawal symptoms ie tenderness and aches that I have in my upper body joints, will probably go on for another 6 weeks.

There is a slight improvement each day but I still feel like 99 years of age at times. :(

http://i7.photobucket.com/albums/y272/Missbe/dancing-witch.gif As of today, new, albeit slow regime to get back on my bike and I am pleased.:D

Clock

[ClockworkOrange]

After reading another post, I thought it perhaps a good idea to finish this thread off, mainly for anybody else who might be diagnosed with Aspergillosis, to know it can end well. :)

I think it was on the 23 March 2010 and finally I was off all medication for Aspergillosis.

Now two years later and my lungs are good, so despite being told it was not curable but treatable, mine seems to have disappeared..........hopefully permanently.

[emily_in_nc]

That's good news, Clock!

Thanks for the update.

[snapdragen]

Wonderful news Clock!