So after talking with my doctor today, it seems like my arsenal of IV meds is pretty much gone. So I was curious as to what happens when your sputum becomes resistant to IV antibiotics. We've already tapped into the Infectious Disease resources too. Wondering if anyone has reached this point and what they went through or what their doctors have done?
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Running out of IV med options
- Thread starter kenna2
- Start date
So sorry you are in this position..
It might be useful to know which bugs you have?
I have m abscessus and aspergillus and while it's theoretically resistant to everything, combining three ivs at a time still gives me some symptom control.There are a FEW new things in the pipeline if you can hang on in there - liposomal inhaled preparations,nitric acid, at trial stage and it may take a while before/if they become available. I also tried interferon gamma, even though I am not interferon gamma deficient , and it helped lengthen intervals between ivs. Worth exploring these options with your doc, but it does sound like they are trying hard to explore all options for you. Obviously, your drainage, exercise and nutrition are vitally important. Being in your situation might make you lack the motivation to attend to these things, but they really influence your outcome. Let us know what happens, I really hope they find something for you
It might be useful to know which bugs you have?
I have m abscessus and aspergillus and while it's theoretically resistant to everything, combining three ivs at a time still gives me some symptom control.There are a FEW new things in the pipeline if you can hang on in there - liposomal inhaled preparations,nitric acid, at trial stage and it may take a while before/if they become available. I also tried interferon gamma, even though I am not interferon gamma deficient , and it helped lengthen intervals between ivs. Worth exploring these options with your doc, but it does sound like they are trying hard to explore all options for you. Obviously, your drainage, exercise and nutrition are vitally important. Being in your situation might make you lack the motivation to attend to these things, but they really influence your outcome. Let us know what happens, I really hope they find something for you
I culture pseudomonas mainly. I am anxiously awaiting for all the new drugs and i'm trying my best to keep myself healthy enough so I can be around to use them. Really excited about the nitric acid usage. We're upping my dosage of IVs again to see if maybe that might help. Keeping my fingers crossed it does.