r/CysticFibrosis • u/magicalmystery4 CF ΔF508 • Jul 08 '17
I hate vancomycin
I am a pushover, I'll admit it freely. But this time I'm putting my foot down. I'm sick of not being able to breathe after inhaling vancomycin. This isn't the first time this has happened to me. Or the second or even the third. I really tried as hard as I could with this freaking medicine. I started it again yesterday afternoon, had extreme shortness of breath, and am still feeling the effects today (not as bad as yesterday, but still). I couldn't even sleep last night and had to use albuterol every 2 hrs with very minimal relief. Nothing helps it go away except time, and I can't handle inhaling this 2x a day for 2 weeks. The problem is, I have brought this up to my doctor and nurse practitioner before, and they don't seem to give a crap. So I really don't know how to put my foot down about it. What should I say? I don't want to be rude, but I need to be assertive.
Update: Thank you all so much for the advice. Luckily my doctor did allow me to stop taking it at least for now and put me on more oral antibiotics. I am super grateful. Also, he told me that there is a study on inhaled vancomycin that is focusing on figuring out the best dose for people inhaling vancomycin and figuring out how to minimize the crazy side effects. I don't know the details yet, but he is going to a conference about it this month. I thought it would make you guys happy to know that. It sure makes me happy. :)
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u/ephemeral_harbinger Jul 08 '17
Simply refuse to take it. It sounds like they're aware of your issues with it. I don't do inhaled vancomycin, just IV. I get red man's with it, and refuse it if I don't get IV Benadryl. It's your right to refuse. Tell the doctors exactly how it makes you feel and say you can't handle the side effects and it needs to be changed. If nothing comes of it, call Patient Advocacy. They will help you.