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
) and it's finally bad to the point where I get very sick every month with decreased response to antibiotics: