Just curious what steps people who have been infected with this fungus had to go through before antibiotic treatments began. Did your doctor recommend that you see an Infectious Disease Specialist first? My question: What was the process like? When did medical treatment to cure the fungus begin --- Days after diagnosis, weeks --- ? How long did it take to cure Aspergillus? Or is this Aspergillus a death sentence.Thank you,Sean 26/m w/CF
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Aspergillus
- Thread starter anonymous
- Start date
mustangmousa
New member
Hi, this is my first time posting, although I've been visiting this site for months. I just wanted to let you know that I've been told that I have Aspergillus for years now and have had to do virtually nothing different for it. No special drugs or doctors and I don't think it has had a huge effect on my CF. The only thing the doctors have said is that I will have to go on some drugs (can't remember names) to completely get rid of it before transplant so that it won't infect the new lungs.It's great to be able to talk with other people going throught the same things I'm going through. I'm on a transplant list and they think in the next year or two I'll be getting one. It scares me to death because of all the negative things that can happen, but I just keep thinking "I gotta think positive!!". Thanks,Martha, 28/f w/CF & diabetes
Hi, My oldest daughter was diagnosed with having aspergillus and being allergic to it. From what I've heard, many people with CF have it and it's not really a problem. The problem comes when they are allergic to it. They treated her with Sporanox first and then added Prednisone for about 6 months. They tapered her off the predinsone and stopped the sporanox. They then retested, cultured whatever it is and her level was way down, undetectable. Knock on wood, she hasn't had any problems with it since. This was almost two years ago when she stopped taking meds for it. Hope the info. helps some. Liza
bowlingguy
New member
i had hi levels of aspergillus back when i was 19, added prednisone for 3-6 months cant remember but levels went way down, havent had trouble with it since and its been 14 years...dunno what caused the spike, but i know its treatable and for the most part nothing to be overly worried about...gl
What my health care providers have found is that it may cause more problems then originally thought. I have it often, might be because of where I live, some states are better for it than others. Anyway, i am treated with Sporonax and am currently on it all the time. Also I have had problems with bleeding lung, which didn't seem to clear up until I started the Sporonax fulltime, whether a coincidence or reality, in any case my health has been better. I have heard I am not the only who this has happened to. So, some docs say it isn't damaging others would argue. I have heard there are other drugs coming available for fungus treatment. Sarah26f w/cf
buffikins23
New member
I also had Aspergillus, and was allergic to it. Though I was basically cured of it after a year and a half of high dosages of constant Prednisone. I still have trouble breathing when it's humid, or rainy, but overall I'm pretty good!!Bethany CF/23/cfrd
I just wanted to say thank you to those who responded to my inquiry regarding Aspergillus. Your thoughts and opinions have given me more than you can possibly imagine. By researching this fungus and using your information, I have been able to make some critical and very positive changes to my current health care situation that would not have been possible without your input. Thank you,Sean 26/m w/CF