D
Dank
Guest
Hi folks,
Does anyone have issues with Allergic bronchopulmonary aspergillosis (ABPA) ? Do you do anything for it, any luck with treatment?
I just got off Prednisone after being on it for the past 20 months. At the start of 2014 I had a CF-related decline in PFT that I was unable to really bounce back from after 3 weeks of IV antibiotics. They noticed my IGE level was over 6000 (normal is around 100 I believe), and had been for several months. They tried prednisone and voriconizole (one of the only anti-fungal medications, I've been told) but my IGE only dropped to around 1500-1000.
Next the docs sent me over to allergy testing, which discovered that I was pretty much slightly allergic to everything, very allergic to aspergillus. They recommended that I go through the insurance stuff to get Xolair prescribed for me, which is an allergy shot. They said it works by taking away part of the immune system that "reacts" to things like aspergillus. They said basically my system is acting as if it's "allergic" to aspergillus, but the Xolair works by making the body NOT react that way. I find this to be slightly disturbing though. That's my bodies way to act defensive when there's an intruder. I don't like the idea, i'm reaching out to see if anyone has any similar problems to see what you may have tried.
Between my sinuses, the allergy stuff, and the pancreas actually working, my CF docs are pretty stumped by me I think. I've been referred out to a lot of specialists in the past few years. No real answers from anyone so seeing what this lovely community has for me =).
Breathe easy.
~D
Does anyone have issues with Allergic bronchopulmonary aspergillosis (ABPA) ? Do you do anything for it, any luck with treatment?
I just got off Prednisone after being on it for the past 20 months. At the start of 2014 I had a CF-related decline in PFT that I was unable to really bounce back from after 3 weeks of IV antibiotics. They noticed my IGE level was over 6000 (normal is around 100 I believe), and had been for several months. They tried prednisone and voriconizole (one of the only anti-fungal medications, I've been told) but my IGE only dropped to around 1500-1000.
Next the docs sent me over to allergy testing, which discovered that I was pretty much slightly allergic to everything, very allergic to aspergillus. They recommended that I go through the insurance stuff to get Xolair prescribed for me, which is an allergy shot. They said it works by taking away part of the immune system that "reacts" to things like aspergillus. They said basically my system is acting as if it's "allergic" to aspergillus, but the Xolair works by making the body NOT react that way. I find this to be slightly disturbing though. That's my bodies way to act defensive when there's an intruder. I don't like the idea, i'm reaching out to see if anyone has any similar problems to see what you may have tried.
Between my sinuses, the allergy stuff, and the pancreas actually working, my CF docs are pretty stumped by me I think. I've been referred out to a lot of specialists in the past few years. No real answers from anyone so seeing what this lovely community has for me =).
Breathe easy.
~D