Just diagnosed with ABPA

I just got diagnosed after 4 months straight of wheezing. 4 months ago my blood pressure was 114, resting heart rate was 52, had asthma, but could run 5 miles, and swam masters. 4 months later I have been on prednisone for 4 months and multiple new inhalers My blood pressure is now 151 and I can walk 4 miles on a good day. I also no longer sleep as a result of the prednisone. Doctors have not allowed me to exercise other than walking and I have lost most of my fitness. I recently started going to a yoga studio and am in week 4 of non-gluten, non-dairy diet to combat on my own. The diet seems to be the most effective, although I do not know if it is the non-dairy or non-gluten part. Diet changes were last ditch effort on my part and have not been easy.

Now that I have the diagnosis you would think that an anti-fungal would be in order. Not the case as specialist wants to add anti-biotics to counter the time that I have been on prednisone before he would submit the blood tests. Also in my future are treatments to kill off the anti-bodies that my body overproduced to fight the fungus. By the way, I think I got the fungus at work where several of us became ill when we moved to a new floor, so I will continue to be exposed. And prednisone remains in my future.

My question for the group is how have you been treated for this? Have any of you not been given anti-fungal medication?

15 Replies

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  • I have not been given anything for this yet. it is one of the reasons I have decided to get a referral to the National Aspergillosis Centre at University Hospital South Manchester (UHSM) in Wythenshawe. It is the only centre of excellence for Aspergillosis in the country - though I think Scotland has something similar now which has been mentioned on here recently. Nothing at all in Wales so a long drive from here but am sure it will be worth it. A bit more awkward getting a referral from Wales as the NHS is devolved so also have to have funding in place so that the NHS Wales will pay for any treatment too. My GP admitted that no one in the practice - including two student Docs they have there knew about aspergillus, aspergillosis or aspergilloma - which we think I also have in my left lung. Well they did when they looked it up of course - nice to be such a rare bird eh? I live right out in the sticks in West Wales. They tell me what should happen is that your consultant should get in touch with the nearest specialist in your illness and get advice on treatment from them. Can't say if they have done this but thought it best to make sure - after discussing other things with a friend who has been through this and others (mainly my wonderful BLF nurse I am in contact with) that I should get a referral to UHSM. Have been waiting about 3 weeks now and they hope to see everyone within 6 to 8 weeks so holding on in there. Unfortunately, they also found a bug in my lungs - haemophilus influenza which is a bug (ger) to get rid of. Think I have had about 8 courses of Antibiotics - still on one until Thursday morning and also been on courses of prednisolone. Never had problems with sleeping with prednisolone before but the last two courses have been horrendous. I do hope no one tells me that I can't have any medication because of prednisolone when I get to Manchester - that will make me really happy. I will feel better just for getting the best expert advice though. It will be wonderful and so looking forward to the appointment - sad isn't it?

    Hope you get things sorted out. I really do know how you feel.

    Love and hugs

    Sian

    xoxoxo

  • Hi Freefaller, I was at the UHSM yesterday as I have recently been diagnosed with Bronchiectasis and I am now being tested for Aspergillosis. The reason I am replying is that I was referred to Wythenshaw as they are a centre of excellence for Respiratory medicine. My appointment was not till the end of September and I have been off work since March and my employer won't let me return to work until I have been seen by the consultant. However I rang his secretary and the appointment could not be brought forward but she did say that the chest clinic ( North West Lung Centre ) which runs daily from 8.30-5pm takes walk in patients if you have a letter from your GP. They only take the first 5 walk ins so it is recommended to attend as early as possible. I went yesterday as a walk in patient and was seen i was given a chest x ray, lots of bloods taken and many tests have now been ordered. I was very impressed with Wythenshaw and they are being very thorough. Long story short if you are struggling with your illness although you are coming from Wales which is a treck consider going as a walk in patient to speed up the process. Hope this helps and hope you get better soon x

  • Well it is a thought. We could drive up the night before and take a hotel and get there at 7.30. Thing is I have had CT Scans, PET/CT Scans a needle guided biopsy and 3 sets of sputum tests and about 4 sets of blood tests since last December. Now they have ruled out cancer it is the most likely with the antibiodies etc that this is Aspergillosis and an Aspergilloma but need to get to Wythenshawe to get that I think without more biopsies - the first (and last one gave me an infection - or brougth out an infection don't know which) It is a thought anyway Deehbee. Where do you live - guess you live close to Manchester. Hope everything goes well for you from now on. Keep in touch so that we can compare notes!

    Love and hugs to you and yours

    Sian

    xoxoxoxo

  • We have no such centre Of excellence as in Manchester reABPA in Scotland.I now attend the wonderful manchester centre and am improving re my condition still a bit to go but things are getting better even though I still get numerous chest infections

    Prednisolone is really tough on sleep but great on anti inflammation for lungs but ask GP re use of Trazadone small dose at night I find it helpful but will not be on it forever .it is not addictive . Are you resident inScotland ?

  • You know the one thing they haven't said from all the scans is that my lungs are actually inflamed? I wonder are they? Didn't think to ask but we don't know the questions do we? I keep thinking that when i am really poorly with asthma axacerbation I take the steroids nd sometimes that first day I feel so much better - like my lungs have opened up usually the second day. But now although theantibiotics may be doing some good the steroids don't make any difference - I actually feel better when I am not on anything although was OK when just on antibiotics for 2 weeks. Thing was it didn't clear the infection. Ah well. Onwards I guess. Considering being a walk in at Manchester now - if only I had known about that before. also considering asking for antifungal medicine. They didn't do a bronchoscopy on me because they were doing the needle biopsy on the nodule and said a bronchoscopy wouldn't show anything about that as the nodule was so deep but maybe the bronchoscopy would have backed up the aspergillus results in the blood tests? We don't know these things and have to rely on the Docs to give us the information but sometimes they are not sure what to do - especially with aspergillosis and aspergilloma and we don't know the questions to ask.

    Thanks for all your help

    Take care and hope you continue to get better and better.

    Love

    Sian

    xoxoxoxox

  • Sorry forgot to say welcome to the site. Becky. Where do you live - no need to give address just area will do - I am just interested to see what different treatments we get in different areas that's all. Also interested to know how old you are I am 55 and have had asthma all my life, Was diagnosed with Bronchiectasis in 2010 and now am here with probable aspergillosis and an aspergilloma.

    WELCOME! HOPE YOU HAVE A LOT OF HELP FROM HERE.

    Sian

    XOXOXOXO

  • It is not that unusual to treat ABPA in the way you describe. Antifungal medication is powerful and your doctors must be happy that they are balancing risk/benefit before they prescribe. You seem to be in the early stages so perhaps they are considering using them once they have run through what they want to do.

    That said you are within your rights to ask why they have not prescribed an antifungal. Some medical centres tend not to, perhaps because they lack experience in using antifungals, or it is possible that they have considered it and elected to not use them for now.

  • Thank you for your response. I live in the US, in California. Perhaps we do not have the experience with this that the UK has. I have considered having the treatment for the antibodies and at the same time be treated by my chiropractor for the fungus. In your opinion would this be safe or just too many courses of actions? I am not usually the granola hippie type, but as this last 4 months has downgraded my life, I find I am willing to try new things. The only bright side is that perhaps I will improve my health by removing some food addictions like sugar in the process and actually eat more vegetables and fruits.

  • I was just diagnosed in June with the fungus at Mayo Clinic even though my broncoscopy from January showed it. No telling why my local doctors didn't treat. I was put on 2 weeks of antibiotics because the culture form June also showed bacteria growth. After that I started on Voriconozole which is an anti-fungal. I've been on it for almost a month. The only real side-effect I'm feeling is dry mouth and chapped lips. Kind of a strange side affect, but it could be worse. I go back to Mayo at the end of August for a re-check.

  • Hi Betsy,

    Do you actually feel better taking the Voriconozole? I know you have only been on it for about a month but is your breathing better? Less wheezing? Are you able to do more? Dry mouth and chapped lips are not a bad couple of side effects are they if it makes you feel better? Has the infection cleared up?

    My partner has some medication that gives him a dry mouth and he has a spray to use - especially during the nights when he wakes with a dry mouth. Sorry do not have the name of it but am sure one of your Docs will know something. Though it is not such a bad thing to put up with.

    Look forward to hearing from you when you have your next appointment at the Mayo Clinic.

    Sian

  • Hey Sian. I really haven't been able to tell a difference with my breathing since I've been on the Voriconozole, but I hear it can take closer to 2 months before you feel the full affects of it. I also may have some bacterial issues still going on that could be contributing to the shortness of breath. Should hear from labs today to see if that's still going on.

    Thanks for the info on the dry mouth meds. I may have to look into it.

  • Sorry to hear... I have had ABPA for almost 4 years, last year I tried a course of intraconazole 400mg for 6 months. It did nothing, I get my lungs cleaned out every few months when the dark green thick sputum appears or I'm wheezing so much I cannot function. I've been blessed with great doctors. I also do a course of prednisone15mg for 10 days with antibiotics as I've just completed. This is a very frustrating disease, I'm young and consider this such a burton on my life. I affected everywhere I do, anytime I fly I get sick my immune system is very low and sensitive. Thus we carry on doing as much as we are able and enjoy life as we know it:)

  • Hi, How do they clear out your lungs? Do you mean with meds?

    I was diagnosed 4 years ago but treated by local respiratory consultant team who didn't know what they were doing. Given drugs that shouldn't be mixed and now have no trust. No treatment for 3 years but I feel so clogged up.

  • Why not ask your consultant give you a different anti fungal .

  • Hi Becky - I was diagnosed on 10th August after 4 years of illness (still not 100% sure though). I've been prescribed a 6 - 9 month dose of reducing Prednisolone. I am still not on this programme but on antibiotics and 5 days a Prednisolone for a current infection. I am generally git and pretty healthy apart fro long term asthma and now ABPA. How are you faring now? R

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