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Hot Pulmozyme!
- Thread starter anonymous
- Start date
Wow, after several years of frequenting this forum, I'm finally able to login - yay! (I think my virus protection was the problem - just switched).
I wanted to thank ALL OF YOU for your support, suggestions, encouragement. Alyssa, it's so sweet of you to be so generous - thank you!
Our latest update: My CF nurse (she's fantastic!) put me in contact with a Genentech rep. This woman had all of the stats, tempuratures, etc. etc. and called the pharmacy for me. She explained that pulmozyme was no longer effective if left out, especially if it was hot. The pharmicist apologized and said he was doing "what he could" to resolve the situation. We still don't have a definite answer, but things are looking a little better. I think what bothered me the most was how it was all handled too. Instead of really looking into the situation, they immediately denied us a replacement. The pharmicist went into this long speech about the research she's read about the drug and how it can be at 86 degrees for 48 hours. I questioned her on this and she said, "Now, this is a powdery substance, right?!" UGH!!!! At least do your research.
Anyway, thanks for letting me vent. I'm glad there are others who have been there. I'll let you know what I find out on Monday.
Thank you again SO SO much!!!
I wanted to thank ALL OF YOU for your support, suggestions, encouragement. Alyssa, it's so sweet of you to be so generous - thank you!
Our latest update: My CF nurse (she's fantastic!) put me in contact with a Genentech rep. This woman had all of the stats, tempuratures, etc. etc. and called the pharmacy for me. She explained that pulmozyme was no longer effective if left out, especially if it was hot. The pharmicist apologized and said he was doing "what he could" to resolve the situation. We still don't have a definite answer, but things are looking a little better. I think what bothered me the most was how it was all handled too. Instead of really looking into the situation, they immediately denied us a replacement. The pharmicist went into this long speech about the research she's read about the drug and how it can be at 86 degrees for 48 hours. I questioned her on this and she said, "Now, this is a powdery substance, right?!" UGH!!!! At least do your research.
Anyway, thanks for letting me vent. I'm glad there are others who have been there. I'll let you know what I find out on Monday.
Thank you again SO SO much!!!
J
jaybird
Guest
The info I've received from Rx nurses is that it should still be cool to the touch and not cloudy or yellow. I would recommend either Walmart Specialty Pharmacy (required a signature) or CF Services (profits go back to CFF). I've had excellent luck with both of these and I live in the boonies (Montana)!
Thanks, Jill - - and everyone else AGAIN for all your help! I always know I can get wonderful input at this forum.
We've been in touch with our Genentech Rep who has beem very helpful. Now, the Rx co. is requiring we write a formal appeal. I'm including a brief intro to CF, why my son NEEDS pulmozyme, and what exactly happened. I'm also going to print some stats on the pulm. web site that explain how this drug needs to be a certain temp to be effective.
Can you think of anything else I should include in my appeal to "win" this battle?<img src="i/expressions/face-icon-small-smile.gif" border="0">
Thanks again all of you - can't tell you how much my family & I appreciate your input!
Carey
We've been in touch with our Genentech Rep who has beem very helpful. Now, the Rx co. is requiring we write a formal appeal. I'm including a brief intro to CF, why my son NEEDS pulmozyme, and what exactly happened. I'm also going to print some stats on the pulm. web site that explain how this drug needs to be a certain temp to be effective.
Can you think of anything else I should include in my appeal to "win" this battle?<img src="i/expressions/face-icon-small-smile.gif" border="0">
Thanks again all of you - can't tell you how much my family & I appreciate your input!
Carey
I would be sure to write the letter with the info that you have already stated, but also try to work in a statement that says something to the effect of "the negligence of the Rx company, could seriously impact the health and well being of my son"
Ok, well maybe that's not exactly perfect, but you get the idea. I think it would be a good idea to cast a little bit of blame & fear their direction.
Ok, well maybe that's not exactly perfect, but you get the idea. I think it would be a good idea to cast a little bit of blame & fear their direction.