I have Allergic Bronchial Pulmonary Aspergillosis since 1965.

[GeraldJago]

Is there anyone else suffering with this problem, I recently been on ITROKONOZOLE , but the ankles have swelled considerable so I have stopped this medication.Also my breathing is bad. My consultant doesn't know yet , but I have decided to revert back to my normal meds because I never had all these problems.

[Hidden]

I've been on itraconazole for about 5 years but haven't have any side effects. I don't think you should stop your med without talking to your consultant. You could maybe ask about trying another of the "zole" drugs. Have you looked at this website? Lots of info and support for people like you and me aspergillus.org.uk/newpatie...

ff x

[peege in reply to Hidden]

FF, just a question - do you take any anti allergy medication to help with the allergic aspect of the aspergillis? I ask because my nice GP has put me on a course of Montelukast to see if it helps my symptoms. I know he suspects abpa but cons disagrees (even though the skin test showed reactions to asperg.... and moulds).

[Hidden in reply to peege]

Hi peeg - my consultant has twice tried me on montelukast. Helped a lot with the breathing but I had very painful join inflammation. This isn't listed as a s/effect and could've been something else, so may give it another go!

My con diagnosed ABPA from very high IgE levels in blood serum (mine was 1000 x normal). I believe this is the definitive test, so not sure how your con can argue with that? Maybe you could ask how high yours was.

Itraconazole is usual therapy, plus maintenance dose of 5-10mg prednisolone. As you improve you can try reducing the pred. My IgE came down to normal levels after 5 yrs on this treatment, and am now off pred tho adrenal glands no longer work . . . so am on cortisol replacement therapy . . . but no matter, I am better!

ff x

[peege in reply to Hidden]

so glad you're better than you were - if I'm getting it right.

My (horrible) Cons said the blood test was clear, x-ray clear and the skin test reaction was 'negligible' . 3 sputum test were positive.

Anyway, cons is still refusing CT scan so I'm no further forward. He said "I'll admit that you have chronic bronchitis but I WILL NOT treat you for something you do NOT have, do you understand, I WILL NOT treat you for something you DO NOT have. Your problems are caused by hyperventilation, that's all".

GP agrees I need to see someone else!

Stay well FF. xx

[Hidden in reply to peege]

He sounds a creep and a bully! I thought overbearing drs like that had died out. What are you doing at St George's when you have the best lung hospital in the country right on your doorstep? Ask your gp to refer you to RBH

ff x

ps the comment underneath is mine, I deleted it cos it was in wrong place x

[peege in reply to Hidden]

Thanks FF, you're right, I did ask my GP for a new referal to a particular specialist at RBH, he said he'd just wait to receive the bully con's letter re my 2nd visit - which came through 2 days ago.

I've also asked the GP practice for my medical recors so I can present all the relevant lung info xx

[GeraldJago in reply to Hidden]

Hi this is Gerald Jago again, but this time I am going to start from the beginning of my illness.It all started when I got Pneumonia back in 1964 and they rushed me into King Edward Vll in Godalming. When I had a chest x-ray they noticed something else growing beside, a specialist came from London didn't know what it was.

After the pneumonia cleared up, I was discharged and went back to work. I had no problems other than my Asthma. In 1966 my life was about to change I started vomiting large amounts of blood, but with something appearing in it. I carried on working at the time, for Butlines Photographic, on the South Coast. Towards the end of the season I caught Double Pneumonia and they rushed back to London. In December thing's were getting worst and the blood and what ever the other item was( FUNGAL and BRIGHT YELLOW). It took until March 67 to convince my Gp at 3am in the what was going on. He too started to feel queasy and was vomiting in our bathroom. So the next day an Ambulance arrived , to take me to Hospital doing only 10miles per hour.Just in case I didn't start coughing up blood . I had to have blood transfusion to replace the blood I lost. So a abcess had grown in my Right Upper Lobe, so a Lobectomy to remove this was achieved.

I was still under 18 yrs old, but I was 18 yrs when I left Hospital as I had to wait for my ribs to heal. I went back to work soon afterwards.5yrs down the line it all came back with vengeance with Bronchiectasis, ABPA and Haemoptysis. I lost 5stone in mbps weight and I was seen at the ROYAL BROMPTON HOSPITAL where a Prof.Scadding prescribed prednisolone for the rest of my life. This was the only medication which surpressed my condition and I have been on this since 1972. It's done a lot of damage, such as thinning of the skin, and Osteoporosis.About 9yrs ago I had a procedure done at GUY'S HOSPITAL , requiring Brachial Artery EMBOLISATION to stop the bleeding, Then I had the same procedure done in November and I hope it will last the same amount of yrs. I still have a persistent cough and it's productive with the help of Carbocisteine 3x a day. I used to be on 2Millions of Colomycin, I was getting more infections so I know it wasn't helping. As I hardly have contact with other people. As with a lot you we all seem to take Ciprofloxacin unfortunately I am unable to take this anymore as it's caused Tendons in both legs problems.So luck isn't on my side at the moment. Now I have to wait for a New Antibiotics.I hope this isn't to boring to read.

[Hidden]

Oh dear, what rum luck you've had with those lungs. My story is a bit similar, but you've had the worst of it. I had pneumonia twice within a yr at age 4, & lung probs ever since ie asthma & chronic bronchitis first, then bronchiectasis and abpa later on. BUT I don't have any fungal balls, just the allergic reaction.

I've been on pred most of my life too, it's helped my breathing a lot but caused havoc with thin skin and bones. I can't take cipro any more either, it's damaged my achilles tendons. I am colonised with pseudomonas so I take colomycin, but unlike you I find it helps a lot. I don't have a lot of haemoptysis tho.

Have you tried nebulising TOBI through the podhaler? I haven't tried it yet as colomycin is still working for me. My current "rescue" antibiotic in tablet form is doxycycline. Try the aspergillus site Gerald, it's good. Also have you looked at bronchiectasis.info ? Great support and lots of knowledgeable people there

When you say you don't have much contact with other people, why is that?

ff x

[GeraldJago]

My immune is zero I also have to avoid people who smoke , even if it's on there clothing. I do like to go out, but it can't be windy and also the area I live in is quite hilly. As long it's flat it's not to bad, and I can always hold onto my Wife's arm.The Achilles Tendon is beginning to go down, slowly but quite painful up the stairs. I assume you are quite young and if that's the case, it's unfair as with me iam 65 and had to retire last November, due to the job I did, which was HEALTHCARE ASSISTANT for the NHS in Brighton. I was only there for 2yrs, but I have been an HCA for over 18yrs working for Nursing Agencies. So I understand a lot of medical terminology and the experience that went with it.

[Hidden]

Hi again. Well I am 60 and like you I've been plagued with health problems all my life. And I live near Brighton!

Have you had physio for the tendons? I had it weekly for several months and although I didn't believe it would make much difference, I was astounded at the improvement. I did the various exercises religiously and they're much better, occasionally sore but mostly ok. I avoid hills because of arthritis in my toes and knee, but like you I feel better holding onto an arm, though I think that's mainly psychological in my case. We drive to flat areas to walk, as you say it's very hilly around here.

I went through a few yrs when I was afraid to go out because I felt so vulnerable. I had a series of immunological tests which showed my levels were below normal, but not seriously so. I was offered antibody replacement therapy but before committing to that I decided to try & build up my immunity with good nutrition, sleep, exercise etc, and very importantly by tackling the terrible depression I had at the time. I also took rotating antibiotics (ie 3 different ones, taken for 2 weeks in a cycle of 6 weeks). The tests were repeated 6 months later and by then the levels were just within the normal range, so I've managed to avoid replacement therapy.

At the moment I'm keeping quite well.

ff x

[Hidden]

ps I look at the weather forecast each day and choose somewhere for a walk based on the wind direction, then we drive there. I get breathless if it's too windy

[GeraldJago]

I haven't been well since last November, that's the problem unfortunetly my wife is much younger. She still has a lot of energy, and I don't.If only I could get back to this time last year, it would be grate. My wife still has another 15yrs before she retires. You're the only person I know who has a similar problem. As far as getting Physio that could be pie in the sky, it's bad enough trying to see my own Gp, I haven't clapped eyes on him since last year. It took 2monthis just for The Colomycn to use with a VENTSTREAM they kept giving the wrong vials. My breathing isnt to bad at the moment , and i only get breathless by bending down putting on shoes or on exursions. Most of the new Meds have messed up my Kidneys and that's why I need to stop, before it goes to far. I actually live the other side of Newhaven out in the country in a place called SOUTH HEIGHTON, so I am rather lucky to have beautiful views, over the River Ouse and Piddinghoe and Southease. The fields at the moment are full of sheep and there lamb's and about 6horses. I expect you reside the other end of Brighton.

[Hidden]

I've been a bit busy today but will send you a pm later

ff

[Linda8p]

Hi just had the same problem been taken of intraconazole because of swollen legs and ankles. No alternative medication offered. Rather worried.