Monday, January 4, 2010

You know its bad when...

A seven year old asks you if you're ok.

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.


  1. Tobi does the same thing to me too :(

  2. I can't inhale tobi. It makes me feel like crap the entire time. I hope you feel better soon.

  3. don't know what you culture and if it's even an option...but my son does inhaled vancomycin. it's not commonly prescribed for cf'ers, but it's supposed to help space time in the hospital for those with mrsa...? we're getting ready to try inhaled genomycin too...
    good luck!!!

  4. I know that there is a dry powder version of colisting that has been trialled in Europe. That looks pretty promising, and it is said that most of the patients in the studies tolerated it

  5. colistin makes me have asthma attacks, so i'm on tobi for a month and on gentamycin the other month... gentamycin is not that bad to inhale, it's just bitter, but it's way better than tobi, and it works well with PA...

  6. Amy, you could try Amikacin. I had to switch to that when I became resistant to Tobi. You do have to mix it but other than that it is fine.


  7. I read your newest post so I think this is a done-deal, but do they have you taking albuterol nebs prior to the Collistin? I was on it for a month and I got a lot of junk cleared out with it, which was worth it to me despite that it was hard to take.

    Also, you could ask your doc about "watering down" the TOBI with normal saline for inhalation, that might make it more tolerable (not hyperton saline). Just an idea- we gotta get you well!

  8. Yeppers MEP, I take alb/atrovent prior, then 3% or pulmo then the Colsitin.