Pancrecarb

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Rebjane

Super Moderator
Just wondering if anyone has heard if Pancrecarb will be approved by the FDA? I tried to use Zen Pep for Maggie . Gave her half zenpep half Pancrecarb and she had immediate effects that were negative digestive wise. Nausea, stomach aches. Tried to do it one more time this past weekend and again horrible stools, huge about 5 of them with oil floating. She has not had that in forever, like before she started Pancrecarb. And this was not even full dose of only Zen pep. Her weight has been so good on Pancrecarb. I have enough for now and I will try to get her refill as soon as I can.

I guess she'll be living on fruit snacks and jello if Pancrecarb is not approved.
 
R

Rebjane

Super Moderator
Just wondering if anyone has heard if Pancrecarb will be approved by the FDA? I tried to use Zen Pep for Maggie . Gave her half zenpep half Pancrecarb and she had immediate effects that were negative digestive wise. Nausea, stomach aches. Tried to do it one more time this past weekend and again horrible stools, huge about 5 of them with oil floating. She has not had that in forever, like before she started Pancrecarb. And this was not even full dose of only Zen pep. Her weight has been so good on Pancrecarb. I have enough for now and I will try to get her refill as soon as I can.

I guess she'll be living on fruit snacks and jello if Pancrecarb is not approved.
 
R

Rebjane

Super Moderator
Just wondering if anyone has heard if Pancrecarb will be approved by the FDA? I tried to use Zen Pep for Maggie . Gave her half zenpep half Pancrecarb and she had immediate effects that were negative digestive wise. Nausea, stomach aches. Tried to do it one more time this past weekend and again horrible stools, huge about 5 of them with oil floating. She has not had that in forever, like before she started Pancrecarb. And this was not even full dose of only Zen pep. Her weight has been so good on Pancrecarb. I have enough for now and I will try to get her refill as soon as I can.
<br />
<br />I guess she'll be living on fruit snacks and jello if Pancrecarb is not approved.
 
T

TonyaH

Guest
I have a feeling we will be in the same boat when our supply runs out. I haven't heard anything yet, but if I do I'll pm you right away. Would you mind doing the same?
 
T

TonyaH

Guest
I have a feeling we will be in the same boat when our supply runs out. I haven't heard anything yet, but if I do I'll pm you right away. Would you mind doing the same?
 
T

TonyaH

Guest
I have a feeling we will be in the same boat when our supply runs out. I haven't heard anything yet, but if I do I'll pm you right away. Would you mind doing the same?
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<br />
 
R

Ratatosk

Administrator
Staff member
Realize it's totally different enzyme that HAS been approved, but has anybody heard anything about when Pancreaze is going to start being available. It was approved April 13th and has yet to be manufactured. Sigh!
 
R

Ratatosk

Administrator
Staff member
Realize it's totally different enzyme that HAS been approved, but has anybody heard anything about when Pancreaze is going to start being available. It was approved April 13th and has yet to be manufactured. Sigh!
 
R

Ratatosk

Administrator
Staff member
Realize it's totally different enzyme that HAS been approved, but has anybody heard anything about when Pancreaze is going to start being available. It was approved April 13th and has yet to be manufactured. Sigh!
 
A

ashmomo

New member
Ashlee is on Pancreacarb but has had some greasy stools recently so we are just switching to Creon. Jordin is on creon and does well with it...maybe you want to try that as an alternative?
We have an over supply of Pancrecarb right not...not wanting to throw them all away so kinda waiting to switch but we already have the new script if her stools continue to be oily.

I know Cf services has stock of Pancrecarb...is that where you get your scripts from? I heard though, that some ins companies may not cover it anymore due to the fact it is not approved, so I would check about that first <img src="i/expressions/face-icon-small-blush.gif" border="0">)
 
A

ashmomo

New member
Ashlee is on Pancreacarb but has had some greasy stools recently so we are just switching to Creon. Jordin is on creon and does well with it...maybe you want to try that as an alternative?
We have an over supply of Pancrecarb right not...not wanting to throw them all away so kinda waiting to switch but we already have the new script if her stools continue to be oily.

I know Cf services has stock of Pancrecarb...is that where you get your scripts from? I heard though, that some ins companies may not cover it anymore due to the fact it is not approved, so I would check about that first <img src="i/expressions/face-icon-small-blush.gif" border="0">)
 
A

ashmomo

New member
Ashlee is on Pancreacarb but has had some greasy stools recently so we are just switching to Creon. Jordin is on creon and does well with it...maybe you want to try that as an alternative?
<br />We have an over supply of Pancrecarb right not...not wanting to throw them all away so kinda waiting to switch but we already have the new script if her stools continue to be oily.
<br />
<br />I know Cf services has stock of Pancrecarb...is that where you get your scripts from? I heard though, that some ins companies may not cover it anymore due to the fact it is not approved, so I would check about that first <img src="i/expressions/face-icon-small-blush.gif" border="0">)
 
R

Rebjane

Super Moderator
Well, I got off the phone with CF services Pharmacy. They are all out of stock of Maggie's dose of Pancrecarb. So I am calling all pharmacys. I just spoke with maggie's nutritionist as well. She suggested e mailing our senators about this issue. It is very serious. I sent an e mail to our senator. Please I suggest everyone else do the same. We are such a small population that need and use this drug and everyone needs to speak up.

Rebecca
 
R

Rebjane

Super Moderator
Well, I got off the phone with CF services Pharmacy. They are all out of stock of Maggie's dose of Pancrecarb. So I am calling all pharmacys. I just spoke with maggie's nutritionist as well. She suggested e mailing our senators about this issue. It is very serious. I sent an e mail to our senator. Please I suggest everyone else do the same. We are such a small population that need and use this drug and everyone needs to speak up.

Rebecca
 
R

Rebjane

Super Moderator
Well, I got off the phone with CF services Pharmacy. They are all out of stock of Maggie's dose of Pancrecarb. So I am calling all pharmacys. I just spoke with maggie's nutritionist as well. She suggested e mailing our senators about this issue. It is very serious. I sent an e mail to our senator. Please I suggest everyone else do the same. We are such a small population that need and use this drug and everyone needs to speak up.
<br />
<br />Rebecca
 
R

Ratatosk

Administrator
Staff member
DH spoke with a relative this weekend who is a medical malpractice attorney. If there wasn't an alternative medication (zenpep or creon), then it would've been worth it to have some sort of suit filed; however, because of the two new meds albeit ones that may not be appropriate or work as well, wouldn't have had a legal leg to stand one.

I did contact the FDA a week or so ago...
 
R

Ratatosk

Administrator
Staff member
DH spoke with a relative this weekend who is a medical malpractice attorney. If there wasn't an alternative medication (zenpep or creon), then it would've been worth it to have some sort of suit filed; however, because of the two new meds albeit ones that may not be appropriate or work as well, wouldn't have had a legal leg to stand one.

I did contact the FDA a week or so ago...
 
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