Sydna Marshall / Questions
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Pancrecarb Replacement
on Aug 06, 2010
Denufosol
Jul 28, 2010 at 12:21 PM

Is anyone else on the Denufosol trial drug?


 


It's a double-blind study but whatever I'm on definitely has a taste.  I'm thinking it's the real drug. I signed up to do the 3 yr. additional trial.  I like it better than Hypertonic Saline.  


 


Anyone else have any thoughts/reactions to denufosol?


 


Also, does anyone else have issues with the machine they use to take the PFTS?  When I do it at study appt. it's like 75% but then 15 min. later at clinic across the street it's 93%.  Consistently like that.  I think that the test at the study is off (or the woman administering it doesn't have as much practice as the people at clinic).  Anyone else have this problem?


 


S.

Answers
Synda - I am on year two of the denufosol study and have two blog entries about it - search "denufosol" and you'll find my comments. I did the year long blind study - my pfts didn't budge, so I assumed I had the placebo (or if I had the drug, it did nothing for me).

Now I'm in the second half where I'll do the drug for at least a year (if I go off the study, it will be because they need me more for a different study). I don't notice a taste, but I do notice that I feel a little more "slippery." I never really cough up much, but what I do cough up certainly seems thinner.

and YES, the PFT laptop sized machine they use for the study consistently shows my percentages as lower than with the jumbo, full-size pft machine the clinic uses (and it drives me nuts). After three months on the actual drug, the percent predicted only showed a 3% increase . . .and I was not happy. But then my CF doctor showed me that the FEV1 had actually jumped a significant amount - and the docs were going to contact the study to see what criteria they were using to calculate percent predicted.

So now I am going to try to remember to keep a log of the actual numbers . . . not the percent predicted - to satisfy myself that this is working, more than anything else!

Where are you doing your study? I'm at Northwestern in Chicago.
Aug 02, 2010 at 6:45 AM • Reply