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Thread: Do you have ABPA?

  1. #1
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    Do you have ABPA?

    I'm a 22 YO female going to UT Southwestern in Dallas, Texas. PFTs are 40-50s...
    I've been discussing possibly having Allergic Bronchopulmonary Aspergillosis with my physician. It's possible that I've had this lurking for years (but doctors blamed it on my family history of asthma ) and it's finally bad to the point where I get very sick every month with decreased response to antibiotics:

    • Brown mucus plugs ~ 3 years
    • "Normal" respiratory tract flora moderate/heavy and aspergillus hyphae ~ 3 years
    • Intense lung pain due to inflammation ~ 5 years
    • Fevers ~ on/off 4 years
    • Bloody cough and increased symptoms around my period ~ 1 year
    • Wheezing ~ past 6 months
    • Skin rashed/hives ~ past 2 weeks



    If you have (or think you have) ABPA, what has it been like for you? Do you have these symptoms? Did your doctor confuse it with asthma and how do you feel they have addressed your ABPA? How is your treatment coming ?

    Thanks!!

  2. #2
    jamest
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    I've been dealing with abpa since at least 2009, and I'm only now realizing how serious it is. The symptoms are often identical to CF symptoms so it is tough to spot.

    I also had persistent undiagnosed fevers for a long time before a CAT scan showed my sinuses were packed with aspergillus. Sinus surgery was required.

    My IGE levels seem to spike in the fall, which coincides with all the dead leaves. 200 ish is a normal IGE level, I get very sick when mine goes over 1000. I definitely recommend getting IGE levels done regularly, tracking it over time has been very helpful.

    My IGE hit 1400 in October, and I kept getting sick and antibiotics didn't help. I took a shot in the dark, stopped orkambi, and started prednisone and voriconozole. It has made a huge difference. Fevers disappeared, brought up lots of brown stuff, now feeling clear and much higher energy level.

    ABPA is a serious problem IME. If you are running consistent fevers and antibiotics aren't doing it for you, I strongly recommend you try a course of prednisone combined with voriconozole. If that works you can also look into xolair.

  3. #3
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    aspergillus

    Quote Originally Posted by artobsessed View Post
    I'm a 22 YO female going to UT Southwestern in Dallas, Texas. PFTs are 40-50s...
    I've been discussing possibly having Allergic Bronchopulmonary Aspergillosis with my physician. It's possible that I've had this lurking for years (but doctors blamed it on my family history of asthma ) and it's finally bad to the point where I get very sick every month with decreased response to antibiotics:

    • Brown mucus plugs ~ 3 years
    • "Normal" respiratory tract flora moderate/heavy and aspergillus hyphae ~ 3 years
    • Intense lung pain due to inflammation ~ 5 years
    • Fevers ~ on/off 4 years
    • Bloody cough and increased symptoms around my period ~ 1 year
    • Wheezing ~ past 6 months
    • Skin rashed/hives ~ past 2 weeks



    If you have (or think you have) ABPA, what has it been like for you? Do you have these symptoms? Did your doctor confuse it with asthma and how do you feel they have addressed your ABPA? How is your treatment coming ?

    Thanks!!
    My daughter has low IGE. We learned through an environmental doctor. The doctor did a test for aspergillus. He did a test with different strengths under her skin. At first no response. After 24 hours she started to have a reaction. As time progressed she got worse. By 48 hours she started to struggle breathing. We had to do steroids to counter act the aspergillum that was under her skin. A few months later she had a cherry. She went in to distress. Never had issues with cherries. We learned the cherry had aspergillum on it. My daughter is deathly allergic to aspergillum. Similar to ABPA. The issue is that her skin test for aspergillum is negative. Blood test for aspergillus is negative. However, she now struggles to breath when she is around. She is almost like a doctor of of it.

  4. #4
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    My daughter also goes to UT Southwestern in Dallas. She sees Dr Jain. Dr Jain was struggling to understand what was going on. My daughter was an outlier. Sounds a lot like your symptoms. There are a few she does not have like the bloody cough or mucous plug. We had to start IGG infusions due to low IGG. It has helped a lot. Still has issues with aspergillum. I am also requesting the ENT to test her sinuses for aspergillum. We still do not understand what is going on. We are looking to see if there is something else that might be autoimmune that might also be contributing.

  5. #5
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    Quote Originally Posted by Katherine H. View Post
    My daughter also goes to UT Southwestern in Dallas. She sees Dr Jain. Dr Jain was struggling to understand what was going on. My daughter was an outlier. Sounds a lot like your symptoms. There are a few she does not have like the bloody cough or mucous plug. We had to start IGG infusions due to low IGG. It has helped a lot. Still has issues with aspergillum. I am also requesting the ENT to test her sinuses for aspergillum. We still do not understand what is going on. We are looking to see if there is something else that might be autoimmune that might also be contributing.

    I've been seeing Dr. Finklea there. It's frustrating because when they first mentioned ABPA and I looked more into it, it seems like the exact match of symptoms to diagnosis. However, my doctor has been ignoring it, ordering more tests, just doing another round of orals or IVs, and asking me to come in for more tests later. When I start to get sick again, they blame it on a combination of asthma (based on family history, even though I've never had an asthma attack) and CF. They put me on an inhaled asthma steroid like Advair or Spiriva, and even though I've tried them for extended periods, they don't work and seem like a waste and a copout.

    After losing > 40% of my lung function, I'm fed up. It's starting to affect my psyche because I feel like my health is just slowly slipping away and I get sad and frustrated a lot. Has your daughter had a large decrease in her PFTs as well?

  6. #6
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    After losing > 40% of my lung function, I'm fed up. It's starting to affect my psyche because I feel like my health is just slowly slipping away and I get sad and frustrated a lot. Has your daughter had a large decrease in her PFTs as well?[/QUOTE]

    In December last year her PFT's were in the 60's. Her 25-75% waste 39%. I believe the IGG she received was the biggest help. The new baseline is low 80's high 70's. She has been on ABX since Sept. We were told last Dec that her IGE was low so it could not be ABPA. It has to be high. Allergies were low. If you would have told me that she was highly allergic to aspergillous. I would say you are crazy. The delayed response test is when we learned about it. We learned that it was delayed but drastic. My daughter does not see Dr Finklea.

    Last year in December when my daughter was on her 3rd hospitalization Dr Jain was confused. She said that she did not know what was going on.
    Dr Jain felt it was related to an allergin despite the allergy tests being negative. She felt it might be environmental. Last December we were not sure how much more we could handle. I read the book is your house making you sick. This is when we learned about mold and how much damage it could causes. Hence the relationship to Aspergilous and relationship to ABPA. The severe response she had to the test. It took lots of steroids to counteract it. She was on the floor is distress. The cherry incident months later was severe as well. She always eats cherries. I was scared. She does not touch cherries. I believe it had aspergilles on the cherry. All she has was 2 real cherries and I had to rush her to the ER. Again scared me.

    Katie is severe pancreatic insufficient. She still is having major malabsorption. Sinuses are a mess. We are doing since surgery. Also going to culture the sinuses to see what is growing so we can know what is going into the lungs.

    I wish I had answers. Have you asked to see Dr Jain? I would also read the book. It is an easy read. Please let me know if there is anything I can do do help or assist.

  7. #7
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    Dr Finklea is more digestive then lungs. Dr Jain is the director and focuses on lungs. She is great at the big picture. She also is open to new ideas and input. If you suggest something she is open to trying things. We love her.

  8. #8
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    Dear artobsessed,
    (I like your name btw, me too). I am a nearly 37 year old with FEV1 in the mid-40s and holding steadyish for the last couple years. I have been diagnosed with ABPA (or ABPM).

    I too have a history of asthma, sinisitus, chronic congestion, and allergic rhinitis. I first had it as a child and spent 6-9 months on prednisone and sporonax which helped. As an adult, it's difficult to know when and how long it's been plaguing me, as the symptoms are so close to asthma, allergies and CF. I had a doctor who barely paid me attention, and then one who fought back against me saying what my symptoms were, until I got my great doctor a few years ago. My ABPA got to the point where we had to do something because my lungs felt inflammed ALL the time. I have and have had many of the same symptoms you do, in particular wheezing (although now it's only when I either don't get all my corticosteroids or when I have an infection); and lung pain and inflammation.. One thing about ABPA in CF patients is that it doesn't necessarily produce itself in tests and symptoms can vary greatly. IGE levels don't tell the whole story and may not mean anything. My IGE levels were high for me- nearly 500- but that isn't considered abnormally high by most standards. I've heard the only definitive test is checking your blood serum (for antibodies). My allergist told me that there was maybe one lab that tested for it and it could take weeks. I said it didn't matter- I'm having these symptoms, and I culture aspergillus. It was a bit of a fight, but my pulmonologist stuck by me and got me a prescription for Xolair. Now I already pretty much do/take everything I can for allergies and asthma. My routine is hypersal, levalbuterol, pulmozyme, and cayston nebulized twice a day (plus one more for Cayston), Plus the air vest twice a day, followed by a puff of the highest Advair, and then two puffs of Qvar. Small dose allergy shots about once a week or so, and Xolair once a month (shot). I also do a hypertonic saline nasal rinse once a day with budesonide in it. Daily allergy pills are zyrtec and singulair. Sudafed/benadryl (sparingly) and ibprofen as needed. Since starting the Xolair my health has more or less stabilized compared to the roller coaster it was before. AND anyone who needs an inhaled steroid should try Qvar- it's molecules are smaller and can get deeper. It's worked better for me than any other.

    If your gut feeling is that you feel as though you are allergic to something and the symptoms match up even if the IGE levels don't, persist. I've had great luck with my current pulmonologist, despite my allergist, and you need a doctor who will listen to you and be willing to try things. The thing about having CF is that there are many things we still don't really know with how our body works and reacts to things compared to a healthy system. I had to do something because my allergies and asthma became full blown allergic asthma. I couldn't be around scented products or in certain (dusty) stores without having a full on attack. I still need to wear a mask everytime I'm outside and probably more times than I do inside.

    One thing to be conscientious and cautioius about-- if you have ABPA, it means that you could very likely be allergic to other molds just as much, if not more so. Your doctor can ask to run an IGE fungal test for the specific varieties. It could also leave you open to gaining or worsening other allergies- pollens, dust mites, etc... Allergies and asthma are both immune responses, and if your body has to respond to high levels for long amounts of time, it weakens the immune system overall. I now also have an auto-immune disorder called Myasthenia Gravis that I suspect was from a reaction I had to taking Tobi.

    Sometimes, I still feel the inflammation and the pain and the congestion never has gone away. But, more importantly is staying steady and not losing ground. Good luck and feel free to PM me if you want to talk.

    Sincerely,
    Beth

  9. #9
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    Iím so sorry youíre going through all of this. My 15yo was diagnosed this past July with ABPA. His PFTs dropped to the 50-60s, IgE was 900, and was wheezing past 2 CF quarterly appts. Dr starts watching when IgE is over 500. Have you had that test yet? He started on prednisone and antifungal. IgE down to 600 and PFTs high 60s. Praying his PFT next week will be back to his normal 70s. My sonís doctor also mentioned brown mucus could be a sign of ABPA infection. Hope you get the help you need and start feeling better!

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