Cayston shortage???

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SIcklyhatED

New member
So, just tried to refill my cayston and was told by the CF pharmacy that there's a "maufacturing issue" as of last week (a.k.a a shortage) and that GILEAD is only giving cayston to those who have had 2 rounds in the last 6 months or another specific group of people. For some reason they say I dont qualify (which in reality I've had 2 rounds in the last 6 months) so no meds for me, for now.
<strong>Does anyone else know anything about this?</strong>
The pharmacy said that there's 2 options: you either find an alternative (aka Tobi, but I'm resistant), or get your doctor to "talk to the manufacturing company" and say it's a medical necessity (I'm sure it's just that simple as "talking to the manufacturing company"....)
 
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SIcklyhatED

New member
So, just tried to refill my cayston and was told by the CF pharmacy that there's a "maufacturing issue" as of last week (a.k.a a shortage) and that GILEAD is only giving cayston to those who have had 2 rounds in the last 6 months or another specific group of people. For some reason they say I dont qualify (which in reality I've had 2 rounds in the last 6 months) so no meds for me, for now.
<strong>Does anyone else know anything about this?</strong>
The pharmacy said that there's 2 options: you either find an alternative (aka Tobi, but I'm resistant), or get your doctor to "talk to the manufacturing company" and say it's a medical necessity (I'm sure it's just that simple as "talking to the manufacturing company"....)
 
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rubyroselee

New member
Yes, I saw an article that there was a shortage of Cayston. They were saying that it was just for "new" Cayston users and those that had been on it regularly would be able to continue it. I'm not sure what their requirements are, but it just stinks. I am not sure if I'll be able to order mine next month; however, I do take it regularly by alternating months with Tobra. Who knows. It's just not good news <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
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rubyroselee

New member
Yes, I saw an article that there was a shortage of Cayston. They were saying that it was just for "new" Cayston users and those that had been on it regularly would be able to continue it. I'm not sure what their requirements are, but it just stinks. I am not sure if I'll be able to order mine next month; however, I do take it regularly by alternating months with Tobra. Who knows. It's just not good news <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
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SIcklyhatED

New member
what really surprised me is that the CF clinic in Tucson didn't seem to have any idea about this. I just had an appointment yesterday and they just said, "If you have any problems getting your Cayston (due to insurance, they hate me) call us!" Not a word about what's going on. And once drugs have a shortage, they run OUT. I CANT take Tobi anymore, and there is no alternative....
 
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SIcklyhatED

New member
what really surprised me is that the CF clinic in Tucson didn't seem to have any idea about this. I just had an appointment yesterday and they just said, "If you have any problems getting your Cayston (due to insurance, they hate me) call us!" Not a word about what's going on. And once drugs have a shortage, they run OUT. I CANT take Tobi anymore, and there is no alternative....
 
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scanboyd

Member
Hello SicklyhatED,
I order from CF Pharmacy also. The told me the same thing. I like you have ordered 2 rounds in the last 6 months. I have emailed, called both pharmacy and manf. Of Cayston, after being busy with them this morning, got call from CF Services Pharmacy; after all the dust cleared. They informed me that my orider would be here in the A. M. The main thing that I kept pointing out that the manf. Guidelines were not being followed. If you have ordered 2 times in the last six months, which I have. Good luck!
 
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scanboyd

Member
Hello SicklyhatED,
I order from CF Pharmacy also. The told me the same thing. I like you have ordered 2 rounds in the last 6 months. I have emailed, called both pharmacy and manf. Of Cayston, after being busy with them this morning, got call from CF Services Pharmacy; after all the dust cleared. They informed me that my orider would be here in the A. M. The main thing that I kept pointing out that the manf. Guidelines were not being followed. If you have ordered 2 times in the last six months, which I have. Good luck!
 
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Incomudrox

New member
Please refer to this thread:

<a href="messageview.cfm?catid=5&threadid=615674&enterthread=y">http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=615674&enterthread=y</a>

It's also pinned at the top of this section.

Thanks
-Frank
 
I

Incomudrox

New member
Please refer to this thread:

<a href="messageview.cfm?catid=5&threadid=615674&enterthread=y">http://forums.cysticfibrosis.com/messageview.cfm?catid=5&threadid=615674&enterthread=y</a>

It's also pinned at the top of this section.

Thanks
-Frank
 
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