wanderlost
New member
So, I probably could do a search for this, but with 2 little ones, time is short - a few questions for you all...
Went to the clinic - my PFTS are still the same at about 75, so no big changes there. I did mention the bleeding and no one was overly concerned.
I brought up getting on TOBi and mucomyst - I thought mucomyst might be a good choice after reading Amy's Warwick stuff, but everyone there was telling me how nasty it was and how it made people's food taste funny and all of this busniess, so I am wondering what the experiences are with it for those of you who use it?
Also, I got and rx for Tobi, but I am a little hesitant to start on it simply because, though I am becoming very compliant, I know you build resitance very quickly to it if you don't use it as prescribed - and I want to make sure I have all my facts straight - so before i start:
does it have any side effects?
does anyone ever stop using it, or am I in for the long haul once I start?
Will I notice a difference in how I feel? Will I feel better? I notice a lot of days (especially if the weather is dreary or sticky) I just feel crappy, and i am guessing it is due to CF rleated stuff, so I am hoping for something to make me feel a bit better, which it seems treating my PA might do.
Finally, the dietician suggested if 6 creon weren't working for me, I might try pancreacarb - anyone on this? How much do you take, etc? Just curious.
I am very slow to change my regime, because although I am certainly not in the best shape ever, the way I have done things for 29 years seems ot be working and I just hate the idea of having to add more stuff into my life - but I also feel it is inevitable with the progression of this disease, and being proactive now will help me in the long run, kwim?? <img src="i/expressions/face-icon-small-smile.gif" border="0">
thanks in advance everyone!
Went to the clinic - my PFTS are still the same at about 75, so no big changes there. I did mention the bleeding and no one was overly concerned.
I brought up getting on TOBi and mucomyst - I thought mucomyst might be a good choice after reading Amy's Warwick stuff, but everyone there was telling me how nasty it was and how it made people's food taste funny and all of this busniess, so I am wondering what the experiences are with it for those of you who use it?
Also, I got and rx for Tobi, but I am a little hesitant to start on it simply because, though I am becoming very compliant, I know you build resitance very quickly to it if you don't use it as prescribed - and I want to make sure I have all my facts straight - so before i start:
does it have any side effects?
does anyone ever stop using it, or am I in for the long haul once I start?
Will I notice a difference in how I feel? Will I feel better? I notice a lot of days (especially if the weather is dreary or sticky) I just feel crappy, and i am guessing it is due to CF rleated stuff, so I am hoping for something to make me feel a bit better, which it seems treating my PA might do.
Finally, the dietician suggested if 6 creon weren't working for me, I might try pancreacarb - anyone on this? How much do you take, etc? Just curious.
I am very slow to change my regime, because although I am certainly not in the best shape ever, the way I have done things for 29 years seems ot be working and I just hate the idea of having to add more stuff into my life - but I also feel it is inevitable with the progression of this disease, and being proactive now will help me in the long run, kwim?? <img src="i/expressions/face-icon-small-smile.gif" border="0">
thanks in advance everyone!