Hot Pulmozyme!

[anonymous]

Hi there -

we just got a 3 month supply of Pulmozyme delivered from our pharmacy that was piping hot! We live in Vegas and I called the pharmacy to explain to them that someone needed to sign for the meds before they left them. I also left a note on the door for the Fed Ex guy to leave any meds (if he decided to leave w/o a signature) in the shade. When we got home that evening, our meds were sitting in the hot sun and the pulmozyme envelopes were HOT! So I called our pharmacy today (mail order) and explained the situation. They said they'd have a pharmacist look into it to see if the meds were still effective?! Any suggestions?! <img src="i/expressions/face-icon-small-sad.gif" border="0">

 

[anonymous]

Sorry, I didn't sign (and I'm unable to log in).

Carey

 

[anonymous]

send 'em back.

if they fight - tell 'em that you're going to complain to the FDA.

the pharmacy gave u bad meds. that's against the law.

 

[Jane]

Didn't someone else here have a problem with FedEx?<img src="i/expressions/face-icon-small-mad.gif" border="0">

 

[anonymous]

This has happened to me 5 times in the past few years. We live in Texas and most of the time UPS had the package sit in storage overnight an extra day. All of the times the pharmacy mailed it to us again with no problem. It is quite upsetting since I have two kids with cf. That was around 35,000 dollars loss, I estimated. I told the insurance company that they could higher someone full time to bring it to me personally rather than shipping it. I have since figured out the system and I have the local ups office number so I call them the days I am expecting it.
Hopefully you can get this worked out tomorrow and they can send you another shipment tomorrow.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf

 

[anonymous]

Thanks, everyone. That's what I thought. I just wanted to get your input in case the RX company put up a fight. I was about to blow my top when they said the pharmacist would look into it and see if the meds were "still effective." HA!!! I'll keep you posted!

Thanks again, Carey

 

[ReneeP]

I had that happen to me once in a pharmacy. I went in to get a refill on Pulmozyme and I watched the girl walk over to the shelf and pull it down. Then she comes over and hands it to me. I said "that is supposed to be in the refrigerator."...she says, oh, let me go talk to the pharmacist. I watch her walk over to the pharmacist, they very briefly talk and she comes back and says "He's not concerned about it". I just looked at her like she had 6 eyeballs on her face and didn't say a word....she finally said "but you are concerned, aren't you"... I refused to take it. I told them to order me another box. Then I left and called the dr and had them call the script into another pharmacy. I never went back to that pharmacy. I was afraid they would give me the same box when I came back the next day. I did call and compain to the manager though.

I think Pulmozyme can be out of the fridge for up to 24 hours but I don't think that counts sitting in the sun. I would have a fit like they've never seen before if they give you any trouble.

 

[Alyssa]

Yes, we have had a couple of mishaps with our pulmozyme here - one time our own fault (just left one box out on the counter over night) and the next time the mail order pharmacy shipped it with an ice pack but just in cardboard, not a styrofoam box -- the first time I just called the local pharmacist and they said less than 24 hours, at room temp was ok. When the mail order place made a mistake I called the manufacturer (as did the pharmacy) They agreed to take it back if I requested, but since it was delivered in less than 24 hours, and it was still relatively cool inside the cardboard box I said I would accept it this time since it really didn't get warm.

But yes, there is a limit to how hot it can get and I would imagine you probably exceeded that temp -- I think it's something like 70 -- it's listed on the box it think.

Anyway, best of luck -- shouldn't be too hard to talk them out of another shipment.

 

[anonymous]

Thanks, guys. You've all calmed my fears a little. I was worried about getting into a shouting match with the pharmacist tomorrow but I think I've got this one won hands down....if they give me any problems, I'll turn into the wicked witch of the west.....(I'm great at playing that part when it comes to my kid and his care - !!!)

 

[Allisa35]

I think I would most definitely be concerned if it was that hot. I would think that the pharmacy would rectify that problem. I am not too fond of mail order pharmacies, but I have to use one for my pulmozyme in order for my insurance company to pay for it. Luckily, they do package it very well in styrofoam with 2 ice packs. Good luck and hope you can get it taken care of!

 

[anonymous]

One thing that might work for you is to get a mailbox at an attended place like a Pakmail. Basically a place that has boxes you can rent and who will sign for you. That way things are always in the air conditioning.

I'm in Texas and even packed with the cool packs, it's just to easy for the drugs too get to hard. The guys at the place we have our mailbox are actually so cool that they give me a call whenever a package is dropped off, so I don't even have to worry about it.

Might not work, but an idea!

 

[damiensmom]

Intresting I was told its not to reach over 68% ever and if it does you arnt getting what you should.I was told not to use it or accept it. I use the c.f pharmacy in Pheinox and they do send me my meds. via fed ex and they wont leave any meds ever at my door I have called and asked if I could sign the door tag and then they could leave it should I not be home. NO they said not on meds, and they come to my door and still ask my name before I sign I laugh they say its there job. Any way they will not send me my Actigall or pulmazyme I have to pick it up and they always say you have a cooler to put that in right. I have my igloo with ice and it goes in there for the drive home. As of last month they gave me a three month supply. I was just packing and preparing for clinic on friday and realized thats 1 less thing to pack n carry! sounds like to me fed ex needs to fire some folks!

 

[Ratatosk]

A couple months ago, I called the pharmacy on Monday and told them I'd pick DS's pulmozyme up on Wednesday or Thursday at noon. I got to the pharmacy on Thursday and it was sitting on the counter. I got out to my car and noticed it was warm. Walked back in and said, hey, this is warm, it's supposed to be refridgerated. The pharmacy tech kinda stammered around and said, "we JUST got it the order in and we just took it out of the box which was packed in ice". Flat out lie 'cuz it was warm, it usually just takes half a day to get our meds -- if I call the night before, they're ready the next day and when I get my tobi from CF Services, the polarpak bags are still frozen. This was 2-3 days after I placed the order. Kinda got the shrug and called my hubby, who said something to the affect of my not trusting our pharmacist.

I must've scared the living cr## out of the poor tech, 'cuz every time I pick up an order they make a BIG production of going into the other room to retrieve the meds from the fridge. I also make sure I pick it up the next day after I call the order in -- according to the product literature, it's okay at room temp for 24 hours.

 

[anonymous]

"I just looked at her like she had 6 eyeballs on her face and didn't say a word....she finally said "but you are concerned, aren't you"... "

LOL!! I needed that today (my newly diagnosed 3 year old cultured PA and I spent yesterday getting the low down on her treatment regimen)

KT's mom

 

[thefrogprincess]

Depending on how long the meds were there the FedEx could have left them in the shade and it just moved. That's not the point though. Your mail order pharmacy needs to require FedEx to get a signature upon delivery. I used to FedEx stuff all the time for a previous job and they can put that stipulation on any package at your request. That way it can't get left in the sun. They could deliver it to a neighbors or keep it at the distribution center and try to deliver the next day.

 

[anonymous]

I AM LIVID!!!!!!!!!!!!!!!!!!!!!!!!

Here's the update. My pharmacy just called back and explained they are not responsible! She said it was shipped out in a timely manner and they will not be reimbursing us. I'm so mad, I can't see straight. My son needs Pulmozyme!!! One of my arguments was that they CALL me to verify WHEN the meds would be delivered...I heard nothing. They had attempted one day and I wasn't there. The next day, they were devlivered and left out all day in the hot sun. what do I do???

In the future, I'm going to have all of my Rx deliveries sent my office. I've had it!

Carey

 

[anonymous]

We get Tobi from CF Services and it's shipped overnight via UPS from Denver. With the ice packs they use, the can stay cool all day long. Took a trip last summer and had the meds in a small cooler with the polarpac ice packs. Lasted for HOURS and temps were well over 95. Last february I packed the cooler at 9 a.m., took a flight from Mexico and arrived home after 10 p.m. and it was still frozen. With CF services, you can track your package, the tell you ahead of time it's on it's way, so you know it's coming.

 

[anonymous]

The Pulomzyme has to be delivered on the FIRST attempt (next day air). It should say that on the box. By the second day, it is hot before it gets to your house since it has been in storage overnight. It was their fault for not leaving it on the first day. Our insurance company swears they call me, but I have only been called once in 3 years for the delivery. Get a hold of the manager/client care person, just work your way up until you get someone to ship it to you again. It might take you all day, but there has to be someone at that pharmacy/insurance company that will listen to you.
Sharon, mom of Sophia, 5 and Jack, 3 both with cf

 

[Alyssa]

If you get in a real bind over this let me know (private message might be the best way) I have extra Pulmozyme I could send you a box. I can ship with FedEx for cheap, (we get a good discount) we have tons of extra cold pack boxes and envelopes here and nobody has any bad bugs (no PA, Cepacia etc -- just staph once in a while) and I really doubt that would be growing on a box in the fridge.

 

[anonymous]

This has happened to me too. Despite the large, brightly colored label on the medication that says "MUST BE REFRIGERATED", they still were left in the warehouse.

How very uncool (pun intended)

If the medication reaches a temperature higher than the limit described in its specs, the enzymes in it (i.e. the compounds that are designed to "jump start" a chemical reaction that makes the medcation actually work) become denatured. This means that they are no longer able to carry out the function they are designed to do.

Bottom line: pulmozyme is NOT effective once it has been subjected to high heat

A little side piece of info, anything that has "zyme" or "ase" in its name means that it has enzymes in it that are what makes it so effective. Enzymes "pick the lock" so to speack, on the door of a chemical process.

-lightNlife (waiting at home for the hospital to find me a bed...what fun)