Yep my boyfriends daughter (who has seen her uncle go through all this and get a double lung transplant) asked me tonight if I was sick. I replied no its just my medication. To which she said oh ok just checking cause you're breathing all funny.
Ah good old Colistin.
I started Colistin again Saturday night and as of Sunday morning I'm horribly SOB and coughing up a storm. Its mainly a dry cough. I'm actually relieved I feel this way because now I know without a doubt it was not the study drug that did this to me. I never really thought it was but its nice to know for certain.
Looks like a call to my clinic is in store for tomorrow. I have a bunch of Prednisone I'm hoping I can just take instead of being admitted. I'm still in Boston and if he wants to see me I'm gonna have to head back down to Philly and I'm just not ready to do that.
I'm at a loss. This is the last inhaled antibiotic I have that I can take. If Azli gets approved soon maybe I will be able to take that. But this was my last and final try with Colistin. TOBI does the same thing so it leaves me with nothing to do. Does this mean whenever I get an infection I HAVE to do IVs? I like the 28 day cycle to keep me healthy. Maybe I can just alternate oral Cipro instead. I wish the inhaled version was out so I could do that. It worked like a charm for me.
For now I'll just be back to my 3 treatments a day plan and hope that my lungs open up.