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Minneapolis clinic

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Joblazer86

New member
I was on another support group forum for gsh and cf and was wondering do any of you go to the minneapolis cf clinic? Do you use pulmozyme or does the doctor prescribe inhaled nac? On the other website it had stated thatso that's why I am asking
 
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miesl

New member
The boyfriend goes to the Minneapolis clinic.

If the doctors had their way...

am: Albuterol+Atrovent+Mucomyst (acetylcysteine) with Vest. Then Pulmozyme (since there's still Vest-time). Antibiotic (alternating Tobi and Colistmethate monthly)

pm: Albuterol+Atrovent+Mucomyst with Vest. Antibiotic (alternating Tobi and Colistmethate monthly).

At some point... 20 minutes continuous exercise.

However - the Pulmozyme seemed to make him worse, so he stopped doing that. Since his numbers have improved since discontinuing, the docs haven't suggested starting up again. Also, his ears start ringing after a few days on Tobi, so the docs said we could drop it as a daily neb - but he'd go back on it if his PFTs dropped.

I don't know how many other people at the Minneapolis clinic use acetylcysteine (it's really stinky) - but it works well for my boyfriend.
 
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Emily65Roses

New member
It's so weird how much difference there is between one CFer and another. A lot of people swear by inhaled TOBI and I can't stand the stuff. Then many people say they got worse after they started Pulmozyme... and that's the med I live on. Haha. <img src="i/expressions/face-icon-small-tongue.gif" border="0">
 
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anonymous

New member
I see the folks at the University of Minnesota, which is the clinic mentioned in that New Yorker article... I tried the pulmozyme and it didn't work for me. Made me feel terrible and watered everything down so much I couldn't cough it out. As for acetylcysteine aka mucomyst, I've used that for most of my life and desptie it's rotten egg aroma, still works remarkable well for me. I alternate between inhaled Aztreonam and Coli, I have no experience with Tobi. Just my two bits <img src="i/expressions/beer.gif" border="0">

-Rich
 
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arabeth

Guest
Both my daughters go to the MPLS CF Center and one is on Pulmozyme and the other isn't. My oldest daughter (will be 10 tomorrow) was put on Pulmozyme right after her diagnosis in Tennessee when she was 3. The drs here just never took her off it but never put my younger one on it. I did ask our dr about putting my younger daughter on it and he did not want to. He actually mentioned taking my older daughter off the Pulmozyme. He said let's get through the winter first before we make any changes... but since we are moving later this month that may all change anyway with the new drs. I would have sworn by Pulmozyme when my oldest daughter first started it. Her health improved so dramatically it was unbelievable. Now, in retrospect, I don't know how much of it was actually the Pulmozyme. She had been misdiagnosed and suffered so much till she was 3 and she was put on so many new meds at that time it's really hard to say what caused the actual improvement. Both girls use Mucomyst regularly thou. It does stink and is very sticky but seems to work well.
 
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