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Thread: Pulmozyme temperature

  1. #1
    Digital opinion leader
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    Sep 2016
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    Pulmozyme temperature

    I went to pick up Jesses prescription last night- two boxes of pulmozyme. The pharmacist came back and said she was really sorry but someone left it in the pick up bin instead of in the fridge. She told us she wanted to check if it was ok.
    Today she called to say the prescription was ready. When we picked it up there was a note on the box saying if it had been out of the fridge less than 24 hours, it is considered safe to use.

    Just called CVS to say we weren't comfortable using it. They went back to check how long it was out of the fridge. 27 hours. They're reordering.

  2. #2
    Senior Member
    Join Date
    Mar 2003
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    2,541
    I had that same issue with them once. They tried to convince me that it had just come in when the box was not in the least bit cool. I declined that particular order and requested they reorder it but because this was the last straw with them, for me, I wrote down the lot number. I didn't trust them to put it in the fridge and tell me it was ready the next day. Yes, it is true that it's safe under 24 hrs but it's supposed to be refrigerated and you shouldn't have to worry if one of the techs is trying to cover their butt for screwing up. That's an expensive loss. Like I said, for me, that was the last straw in a string of other issues, I quit using them and switched to Target pharmacy and have never ever had an issue with them.

    Good for you that the pharmacist was honest and up front with you!
    Liza - Mom to Anna' (4.24.2011 @ age 24 , 2 dbl lung tx, CF, CFrD)
    & Rachel ( age 25, CF, CFrD & Crohns and now pre-tx)

  3. #3
    Junior Member
    Join Date
    Sep 2013
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    24
    Hi ,

    I just got to know about pulmozyme from this thread. Am Mother of a CF baby boy of 3 years and from India where CF is considered rare and medication for it is extremely rare. Pray tell me how effective it is and it's cost so that I can give this info to my sons ped and try source it from somewhere. I see from net that genentec is the only pharma dealing with it. I see a mention of Target pharmacy. Would like to get more details.

    Thanks in advance

  4. #4
    Senior Member
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    Mar 2003
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    Genentech is the pharmaceutical company that makes Pulmozyme. There is not a generic equivalent of Pulmozyme (Dornase Alfa). You would not get the medication directly from them. Target is a store that has a pharmacy in it. There are mail order pharmacies that you can get it from as well. A mail order pharmacy will ship it overnight, in a Styrofoam container with freezer paks. You mention you are from India and speak as if that is where you are currently. I believe you would have to get it from a pharmacy that would need to ensure you can receive it in a cold state.

    Pulmozyme is a "maintenance" drug. It is used to help thin the mucus so that it can be coughed up easier. It is a inhaled medication, dispensed through a nebulizer. Usually the prescription is for one ampule nebulized daily, in some cases a prescription is written for twice daily. To my knowledge, most all CF patients are on Pulmozyme at least once a day. You mention you have looked on the web, so I assume you have been to the Genentech web site. They have a little video that shows how it works. You can also find more information about it on the US Cystic Fibrosis Foundation site. www.cff.org You can simply do a search within the CFF site for pulmozyme.

    I hope some of this information is helpful to you.
    Liza - Mom to Anna' (4.24.2011 @ age 24 , 2 dbl lung tx, CF, CFrD)
    & Rachel ( age 25, CF, CFrD & Crohns and now pre-tx)

  5. #5
    From what I understand it is an organic compound, and needs to be refrigerated. It is an enzyme made from hamster ovaries. (I know weird huh!) But it is perishable because of its organic origins. Insulin refrigeration needs are similar because it is mostly made biosynthetically by recombinant DNA technology or 'genetic engineering. Digestive enzymes are similar because they come from the pancreas of hogs, but they are a bit more stable. However, they still cannot withstand higher temps.

    It frustrates me that pharmacists are not always up on the cystic fibrosis drugs, but that is just because they do not have as much exposure to them. Which I should be thankful for that I guess. It means we could be on the verge of a cure?

  6. #6
    Shelly43
    Guest
    I get all of my sons drugs, except IV meds or immediately needed antibiotics, from CF services. It's on the CF foundation page. The great thing is they come in the mail and I never have to stand there and argue with a pharmacy tech who doesn't understand CF (yes he is 15 and yes he does need that high of a doseage)...The clinic faxes them the scripts and they deliver in three days..Easy Peasy, I go online and order what he needs they take care of it all. Before this I was going to every pharmacy in town and half the time they couldn't get the tobi in on time even though they knew I would need it again in two months and ordered ahead. His meds are always cool even in the worst summer heat. I thank god for Cf pharmacy all the time, they have programs for free ADEKS and scandi shakes sometimes and can help you with insurance issues and helpful programs... Really they are the place to turn if your having troubles.... Not to sound like an ad for them? but really it simplified my life a lot, have a question on a med? they know what they are talking about...

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