Aspergillusfumigatus treatment

@reneemc I did need to do both the anti fungal and antibiotics at the same time. My bronchoscopy showed no bacterial infection after about 4 months of antibiotics but the aspergillos did show up. I did 12 weeks of Cresmba. I did get a script for Zofran as nausea was on of the side effects. I did the anti fungal before bed, with food. Walkers shortbread was my go to! Nothing too heavy in my stomach before bed but enough to help out when taking the meds. They also helped with the taste as the taste was very off putting to me so needed that incentive to choke them down!

@hbcupcake Thanks very much. We did not get approved by insurance, but still working at getting it. High eosinophils, high IgE, but must also fail a treatment of long acting bronchodilator and steroid puffer. A ridiculous requirement, given history, but what can one do but play the game.

I was diagnosed with bronchiectasis and then a few months later a bronchoscopy showed both Aspergillus and M. Abscessus. Side effects. with the medications can really devastate quality of life! I had a dangerous elevation of blood pressure with Brinsupri.
I started Linezolid and Nuzyra and one week later added Cresemba. I felt like I lost a few weeks there and was pretty much bedridden with nausea and a 12# weight loss in 3 weeks.
When I was at NJH it was noted that my blood counts were dropping and my feet had become quite numb. Both can happen with Linezolid. It and Nuzyra were stopped. with continuation of Cresemba alone. I left Denver with better lung function and saturation and with minimal side effects.
For me the thing that made the difference was learning how to get better airway clearance. I had been given a nebulizer and an AerobiKa months before but never had any instruction on how to use them. If I look at why I am feeling so much better (not using ANY inhalers) the airway clearance is the only explanation! Don't give up!!

@smtdoc Are you using the nebulizer and the flutter Aerobika? The nebulizer is making me constipated (my pharmacist said there are reports of that), so I'm just using the flutter Aerobika right now). Seems to be doing the trick. I am going to write to my NJH doctor to ask him what he thinks. When I left there, he told me all I needed was the Aerobika. My AZ pulmonologist told me to nebulize 3 or 4 times a week. Once or twice leads to constipation. Roz

Hi Rozie- I use them together. And I have a productive cough that I didn't before. That is good news. I am fitted with the vest Tuesday. I will plan on using them combine twice each day. It was noted that I have silent aspiration with liquids. Along with elevating the head of the bed it was recommended that in addition to using floss and the Water Pic, I brush my teeth two times, 30 minutes each. I understand the need to decrease chances of aspirating oral flora but 30 minutes?

@tw508 definitely keep pushing especially if your Dr is willing. For reference, I fought for almost all of my treatment from June 2025, appealed my insurance 3x then did a department of managed care appeal. Just got my approval end of Feb!! Getting all of my out of pocket money back. Don't give up!

@smtdoc This must have been an error about brushing teeth for 30 minutes each time. It’s usually 3 minutes!

I took Cresemba for three months for aspergillosis. The only side effects were constipation and bloating. I hope you will have an easy time.

@paxmundi
and that I can do

@smtdoc No one ever told me to brush my teeth 30 minutes. They did tell me to brush after lunch also and brush my tongue. I had trouble sleeping with the head elevated. Sleeping is important too. I bought an electric flosser which does work for getting a lot of little stuff out...when I use it. I am trying not to spend a big portion of my day concentrating on this disease. I am lucky that what I'm doing now is adequate. I feel really bad for everyone who has to spend a lot of time just being able to breathe. When I think about it, I still get really mad that this happened. Thanks for listening. Roz