Hi Everyone
I have severe asthma and have just been diagnosed with Allergic bronco pulmonary Aspergillosis. This is a fungal infection in the lungs. I have been prescribed a trial course of anti fungal medication. Just wanted to see if anyone else has this condition. I am looking for information about it . Thanks for any replies.
Debbie
Hedgehog50.
Hi Debbie
There is much technical, medical, statistical data out there on ABPA. Just search for ABPA and or SAFS (which is a similar illness) . I have read all that I could find, which did help me understand the disease in the main. I found the ABPA & SAFS websites are predominantly directed at doctors and professionals. I was diagnosed with SAFS 18 months ago. I do not know anyone who can relate to SAFS, & have felt quite isolated as no one I know, or am likely to meet is going to be able to empathise. So I was really interested when I read your post. I am on anti fungal tablets, and they have worked amazingly. But as ever the tablets have side effect so it is now the long term care plan I am wondering about. Has the anti fungal made a difference to your Asthma Debbie?
Rgds, Coral
Hi Both,
I've been diagnosed with SAFS after several years of very poor asthma control. My consultant has been trying to avoid me having long term antifungals because of the side effects, but when I have had them they have made a difference, and my asthma control has been better for a while after I stopped taking them. At the moment I'm taking Azithromycin, which is antinflammatory aswell as an antibiotic, and this works well for me and has decreased the amount of pred courses I need. It dosen't completely stop my asthma exacerbations, but they aren't usually as bad. It does feel as if you're the only person out there with SAFS, and consultants seem to get quite excited about it!!!!!!
Hi Thanks to you both for your replies. I have just started the anti fungal tablets - so not sure if they are working or not. consultant explained the possible side effects. However so far I haven't experienced any major problems. I have looked at a couple of websites which have been helpful. Just really wanted to see if anyone else had this condition. I see there is no cure? Is it something we learn to live with? At the moment my Asthma isn't too bad - although the doctors say its Brittle/severe. I went through a really rough time last winter when I was on steroids and had difficulty getting off them!! -
Can we keep in touch and support each other - I wasn't sure if I would get any replies and know how isolated one can feel, when there is no one you can share with.
Debbie
Hi Cliff and Debbie - Feels reassuring that some fellow struggler's are out there. I know I will be able to empathise with you as you both have severe asthma, that is quite a shock in itself when you are first told that. (I have read that some top asthma expert have considered re categorising severe asthma as is does not behave in a way that asthma does and is generally recognised). I am keen to know what makes you feel isolated, uncomfortable, worried, worse, better. We have broached the subject of isolation so I thought this was a reasonable place to start. The feeling that no one else out there can associate. When asthma comes up in conversation, and I never bring the subject up because I understand it is not a riveting conversation for most. They either refer to someone they know, or have asthma themselves which never 'looks' like mine, I listen. but just feel we are not talking about the same thing (re my comments above this is probably true). I can think of loads more to discuss, what drugs are you on, what ones worked the best, did you have any adverse side effects, do you know what makes you worse, have you taken any steps to improve your environment - loads of questions. Does any of this strike a cord with you guys?
Hi again. I am so glad to hear from someone with a similar condition. I have the same problem with people understanding my asthma and how it effects me. Some of my work
Colleagues do not understand it and expect me to carry on working when I have breathing difficulties. It was a shock to get the aspergillosis diagnosis and now that I stared
on the new meds - trying to work out if they are helping or not? I have been feeling really tired over the last few days and not sure if this is a side effect of the meds or part of the condition. Any Ideas? I am thinking about getting a GP appointment. The info I have read about aspergillosis is that one can have a lack of energy and to pace yourself! But I work full time - 9am-5pm Mon -Fri. So it's hard to know what to do! i am on other meds for other medical conditions - so comparing meds would be a good idea.
Enough for now as I am on lunch break and need to get back to work.
Debbie
Hi,
I was told I had allergic aspergillosis while I was admitted three weeks ago. I am hoping it explains why my asthma has been so bad recently and the new meds will help improve my control. I have been on pred since April with 7 admissions (2 on HDU) and going back on maintenance pred was looking like a real possibility (was last on it 15 years ago).
I have always found I get really tired when my asthma is bad which my cons said was quite normal (my sleep is really disturbed though). If you are finding work difficult, could your manager refer you to occupational health. I found this really useful as my employers seemed to think that asthma is not that bad and shouldn't interfere with your work. I also found that my asthma was better when I was on holiday which could be explained by the fact that I can pace myself and adjust activities accordingly which I can't do at work. Occupational health wrote a report stating how I should be allowed to pace myself (ie taking a break if needed, not going outside etc) stating that I was likely to be covered by the disability act for absences (they questioned the fact I had two weeks off after ending up in HDU). This made my employer listen but also made me feel better in making these adjustments.
Hi All. I cant get over how we have found a forum to share experiences - you guys have made such a difference to me. I now work from home so I do not have the pressure of a boss deeming whether I am ill enough to warrant any special dispensation. But I still have to work hard and try and push thorough the 'inconveniences' that my SAFS (Severe Asthma Fungal Sensitisation) brings. About two years ago I cut out all sugar. Not for asthma but because I craved sugary food all the time, secondly because both my sisters and my mother have/had (mum has since died) diabetes, and thirdly because of a job role change I was putting on weight fast. Cutting out sugar coupled with a stint on 'my fitness pal' (calorie counting app) helped greatly with weight loss (2.5 stone nice and slowly, over about 20 months),. I found this had a beneficial effect on my asthma. Not necessarily alleviating symptoms - but I felt I had unburdened my body of other problems it did not need to deal with. Processed food and sugar take effort out of an already strained (i.e. dealing with severe asthma) body. I highly recommend it. Like I said it does not necessarily help your asthma, but eating with a 'field to plate' really helps your general well being. I am now back on the itraconazole (anti fungal tablets, also called sporanox). First course for about 9 months 2013/2014 gave me such amazing relief, for the first time in 10 years I felt like I didn't even have asthma. Came off them, asthma came back, so back on them now. But you cant stay on them for long, so I have to wait and see what the next plan of management is. Thanks for your input Kayla - resonated strongly with me for when I worked for a big corporation for 12 years. They will never know how strong I was, they thought the 2 weeks off twice a year on a shed load of steroids and a stay in hospital was me exploiting the situation. Before I sign off I would just like say how HAPPY I am to finally have a clear diagnosis, and to know the enemy I need to fight (fungus spores and mould). My husband and I have spent a year completely re vamping upstairs so that we are mould free. No carpets, no curtains, all anti everything bedding. I have babbled for long enough, Debbie, are the anti fungal tablets working for you and did you get to the doctors about your lethargy? looking forward to the next post :0).
Hi, I am so glad I started this thread and to have the chance to talk with others about this condition and how it effects us. I think the meds are helping - chest feels better but it's the side effects that are getting to me. I have telephoned my Consultants secretary to notify him and am waiting a call back. I also have appointments for a blood test tomorrow and for GP on Monday. Hope to get some advice then.
Coral you say that you have removed carpets etc from your bedroom - has it helped your asthma? I am having talks with my landlord (as I rent) about removing the carpets. I live in a first floor flat. I have carpets in my bathroom, lounge and bedroom. I have been advised by the Asthma nurse to remove/replace bathroom carpet but should I do other rooms?
I feel there could be a damp issue in the bedroom. With this recent diagnosis I do not want to rely totally on drugs and want to improve my surroundings too?
Thanks for your post Kayla - I work for a Christian Charity and have changed my duties due to asthma problems at the end of last year and early this year. So am grateful to the one colleague I work closely with, for her support.
Anyway need to get back to work now. Glad to know that we have somewhere to chat and share experiences etc. I have loads of questions too!
Take care
Debbie
Hi all.
Debbie your question re carpets. As our asthma is shown to be fungal / mould sensitive. I doubt whether removing the carpets makes a great deal of difference as the carpets are very dry and mostly harbour fibres and dust. As your asthma nurse said, the bathroom carpet gets damp and is a good environment for moulds and fungus, so it makes good sense to remove a bathroom carpet. NB: if you have already got or are going to uncovered original floor boards it is worse than having carpets down, it is amazing the how much dust is disturbed into the air from the joists underneath, just by having drafts from windows and walking about. I changed form carpet to hard flooring as it makes the house easier to keep clean and dust levels upstairs has been seriously reduced, but have not noticed improvement in my asthma.
I have been advised to remove all house plants, as the soil has moulds/fungus in it. Also, its advisable to research face masks which will filter spores when for doing gardening or dusty housework like N95 and FFP2 & FFP3. We should probably use them walking in the woods but its not for me. I try hard to do the right thing but when it comes to not being able to walk freely with my friends I will take the hit.
Since having a definite diagnosis my asthma has been controlled much better. I have gone from so many inhalers daily that were prescribed to take more than recommended doses - backed up by many tablets - and of course prednisolone - to which I am hyper sensitive, what a horrible roller coaster steroids are for me. Now just one inhaler - 2x2 per day, the itraconazole and the odd ceterizine of my sinusitis.
I think the doctors and scientists are amazing and I am so grateful for their dedication.
Hi Coral,
thanks for your comments re carpets. I am going to have my bathroom carpet removed. I have someone coming tomorrow to measure and then they can give me a quote. I have had an apox quote from the. The other idea I had was to take the carpet up myself and get a friend to help lay the new tiles -not sure on that Idea. I would wear a mask.
Anyway going to wait for the quote. Apparently carpets in rented homes should be replaced every ten years and mine are much older than that? Can I go anywhere for advice?
Anyway going to see my GP this afternoon - I have had a wheeze on and off for the last few days and am still feeling tired.
Catch up again soon.
Take care
Debbie
Hi, it's been a couple of weeks since my last post. I am feeling less tired but now chest isn't too good.
My peak flow dropped yesterday but is back up today. Still getting my head round the aspergillosis diagnosis.
Nothing is really affecting me at the moment, not sure if it's due to all the meds I am on or if I am less sensitive.
On the way to work this morning passed a chap using a big lawn mower, no symptoms. Unless it's affecting me now?
I mentioned my wheezy chest to the GP (when I last saw him) chest was clear then.
Does anyone know how stress can affect your chest and asthma GP thinks mine is stress related but cannot find a trigger as such.
Any advice would be welcome.
Hope everyone is well.
Debbie
Is anybody else's asthma playing up at the moment? I'm assuming mine is because of all the dead leaves etc about at the moment, (ideal breeding ground for aspergillus). I've only got to go outside the door and I can't stop coughing and wheezing. Saw GP on Friday and now on 40mg of pred for 7 days. I did feel better, but now feeling worse again for some reason, got nabbed by my respiratory nurse in the corridor, (I work in a hospital), because she'd heard me coughing all the time, and my sats are only 93% on air. Now trying to avoid a trip to A&E!
Hi. I am finding my asthma difficult at the moment. I seem to be having a slight wheeze every couple of days. I had a check Infection a couple of weeks ago. I had antibiotics but not steroids. Have since had a slight wheeze on and off since.
I walk to work each morning and now it's down an Avenue of trees shredding leaves. Not sure if I should carry on using this walk or choose an alternative.
Can leaves lying in small groups on the ground affect breathing or is it just when the leaves are stirred by walking through them that?
I have the allergic aspergillosis and Asthma and am on Antifungal drugs as well as fostiar and cyclicisonide Inhalers. I have been told to keep away from pred tablets.
By GP and Consultant.
does the wet/damp warm weather effect your chest? I think it effects mine as it's wet today and I feel tight and wheezy?
Debbie
Can't wait for all those nice rotting leaves to go away. 6 weeks of pred, permanent anti-fungals, and now looking at methotexate to try and cut the amount of pred I'm taking. Not a happy bunny, just a wheezy slightly blue one!
HI Debbie and other sufferers - Asthma all my life and have attacks which clear up. In August been clearing up the garden and have been short of breath ever since. Consultant thinks I may have ABPA. 4 years ago I had a similar incident and they found ""insignificant amount of aspergillus"" in my lungs, lasted 12 wks then. In November when saw consultant he gave me 2 months of fluconazole and to go back in 2 wks, as no improvement he put me on 4 pred per day which he said used to be the drug of choice used before anti-fungals and told me to reduce to 3 when I started to feel bit better which I did. Last week I was so much better and feeling great and so happy but now it has come back. I go back to see him on 27 Jan.
How are you and have you any advice? How long have you been taking the anti-fungals? Thinking of ringing up his secretary as I had to really push to see a consultant as my new GP just kept saying there is no wheezing, which I never do. Wondering if I should have stayed on the anti-fungals all along. The nurse practitioner was absolutely marvelous and gave me the support lacking from my GP. I will look on ABPA website.
Thanks so much for replying. x
Hi All,
have been on itraconazole twice a day plus Relvar Ellipta inhaler, which after a few weeks now seems to be working, apart from a bit of a blip before Christmas, (which was probably viral), things seem to be settlling down. Have everything crossed that it stays that way for a while!
Hope you all had a good Christmas.
Hi How many weeks before you saw an improvement and were you diagnosed by a blood test? Was on anti-fungals for 2 weeks but as no improvement consultant prescribed 4 pred per day instead. Felt a lot better for a week before Christmas so reduced to 3 as instructed then it came back. Rang con told to go back to 4 per day until see him end of Jan. Maybe I should have been on anti-fungals longer than 2 weeks, Any help gratefully appreciated.
I'm on the antifungals now for a year, it took at least 3-4 weeks before I saw any difference though. I was diagnosed with SAFS after a RAST test for fungal sensitivity showed an off the scale reaction to aspergillus plus a few other things! My IgE is 2400 (upper limit is 80), so my cons is keen to try and get it down. The plan seems to be to use the antifungals as a bridge therapy, (you can only take them for a year), to hopefully get my IgE low enough that I can have anti-IgE therapy.
Thanks cliff hopper for replying. I had a rast test at GPs and am allergic to some moulds and fungi. They said the aspergillus test could only be done by the consultant who said he suspected I may have ABPA but has not tested me for it., Just gave me anti-fungals for 2 weeks stopped them and now been on pred since November. Maybe I should have been on the anti-fungals longer. See him on 27th so will ask for test as I need a definitive diagnosis as this has been going on since August and the more information I have the better. Thanks again.
I have ABPA, waas diagnosed 6 months ago and was not given any anti fungal drugs just Pred. Started on 8 tabs a day weaning off the now down to 10mg 1 day and 7,5 the next. hope to go down to 7.5 every day in a couple of weeks. However the last time I went lower I was only there for a week and all symptoms started up again. Had to go to the asthma nurse as I rang the consultants office and NO-one returned my call. Seeing the consultant at the end of the month. So nice to hear from others with the same diagnosis.
So glad to find this post my 3 yr old has had allergy tests and tested positive for cats, dogs, rabbits, horses, grass egg and high level aspergillious. Awaiting doctors decision on what to do next. Stupidly i googled and read things that worried me. Im quite stressed about it. We had a rabbit but gave it away day after results. nAsthma nurse hopes getting rabbit away will help. I really hope so. x
Hi Eilen nnSo sorry to hear about your daughters allergies, does she have Asthma? I have had Asyhma all my life and it became brittle a couple of years ago when I was also diagnosed with Allergic Bronchopulmonary Aspergellosis. I have been on anti fungal drugs for a while now and lots of other meds. So glad you posted here. We all need the support!! nI have just had an unexpected Asthma attack and am at home recovering and finding it hard. I feel so tired and drained. Each time I have an attack I have a different reaction and it's hard to know how long the recovery will take!! nnTry not to get worried and anxious. I am sure that the doctors will come up with a suitable plan. nnSending you hugs and God Bless. nnHedgehognDebbie
Allergic asthma and symbicort
Tired and allergic
Allergic asthma
Non allergic rhinitis
