Ultrase MT 20 enzymes

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martysmom

New member
Hi all!
My little guy is on Ultrase and they have not recieved FDA approval. Anyone have any idea of what's going on? Our CF doc gave us a bunch of samples to help get us through until Ultrase and the FDA worked it out. We really don't want to have to switch because he is doing SO WELL!! I only have enough enzymes to get him through 8 more days so I guess it is time to call the doc. My pharmacy couldn't fill it and I guess I could try to get it from the online CF pharmacy, but I think that might just be a temporary fix. Any suggestions? Does anyone have good experiences with different enzymes? THANK YOU SO MUCH!!!
 
M

martysmom

New member
Hi all!
My little guy is on Ultrase and they have not recieved FDA approval. Anyone have any idea of what's going on? Our CF doc gave us a bunch of samples to help get us through until Ultrase and the FDA worked it out. We really don't want to have to switch because he is doing SO WELL!! I only have enough enzymes to get him through 8 more days so I guess it is time to call the doc. My pharmacy couldn't fill it and I guess I could try to get it from the online CF pharmacy, but I think that might just be a temporary fix. Any suggestions? Does anyone have good experiences with different enzymes? THANK YOU SO MUCH!!!
 
M

martysmom

New member
Hi all!
<br />My little guy is on Ultrase and they have not recieved FDA approval. Anyone have any idea of what's going on? Our CF doc gave us a bunch of samples to help get us through until Ultrase and the FDA worked it out. We really don't want to have to switch because he is doing SO WELL!! I only have enough enzymes to get him through 8 more days so I guess it is time to call the doc. My pharmacy couldn't fill it and I guess I could try to get it from the online CF pharmacy, but I think that might just be a temporary fix. Any suggestions? Does anyone have good experiences with different enzymes? THANK YOU SO MUCH!!!
 
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rubyroselee

New member
I know, I am also on Ultrase MT20's. I luckily just refilled my 3-month supply, so I have enough to get me through a few more months, but it still worries me. I have been on these since they came out! And I have done really well on them. I'm a little afraid to have to make a switch. I am going to call my CF doctor in a couple months and get a new Rx for something different and I'm hoping he has a good idea of which enzyme will be appropriate for me. I wonder if there is a big difference between the enzymes?

So any input from people on Creon, Pancreaze, and Zenpep would be appreciated!
 
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rubyroselee

New member
I know, I am also on Ultrase MT20's. I luckily just refilled my 3-month supply, so I have enough to get me through a few more months, but it still worries me. I have been on these since they came out! And I have done really well on them. I'm a little afraid to have to make a switch. I am going to call my CF doctor in a couple months and get a new Rx for something different and I'm hoping he has a good idea of which enzyme will be appropriate for me. I wonder if there is a big difference between the enzymes?

So any input from people on Creon, Pancreaze, and Zenpep would be appreciated!
 
R

rubyroselee

New member
I know, I am also on Ultrase MT20's. I luckily just refilled my 3-month supply, so I have enough to get me through a few more months, but it still worries me. I have been on these since they came out! And I have done really well on them. I'm a little afraid to have to make a switch. I am going to call my CF doctor in a couple months and get a new Rx for something different and I'm hoping he has a good idea of which enzyme will be appropriate for me. I wonder if there is a big difference between the enzymes?
<br />
<br />So any input from people on Creon, Pancreaze, and Zenpep would be appreciated!
 
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hmw

New member
I'd also call around as many local pharmacies as possible too, since anyone that still has them in stock can dispense them until their supply runs out... someone else local may still have some. I hope Axcan gets this worked out soon without leaving too many people in the lurch... this must be incredibly frustrating for everyone on the enzymes that haven't yet gotten approved. <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
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hmw

New member
I'd also call around as many local pharmacies as possible too, since anyone that still has them in stock can dispense them until their supply runs out... someone else local may still have some. I hope Axcan gets this worked out soon without leaving too many people in the lurch... this must be incredibly frustrating for everyone on the enzymes that haven't yet gotten approved. <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
H

hmw

New member
I'd also call around as many local pharmacies as possible too, since anyone that still has them in stock can dispense them until their supply runs out... someone else local may still have some. I hope Axcan gets this worked out soon without leaving too many people in the lurch... this must be incredibly frustrating for everyone on the enzymes that haven't yet gotten approved. <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
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martysmom

New member
So I heard that they might have to change the name of the Ultrase MTs. Similar to what they did to Creon because there was actually more lipase then originally thought. I guess once all that is done and approved then everyone will just need a new prescription to get them refilled. I do hope they do this quickly! I heard some good things about Creon, but I also heard so many great things about Ultrase. Marty has done so well with them so it is scary to switch. It is the only enzymes he has been on as well and they have been so amazing! I'll keep you posted on what else I hear!!
 
M

martysmom

New member
So I heard that they might have to change the name of the Ultrase MTs. Similar to what they did to Creon because there was actually more lipase then originally thought. I guess once all that is done and approved then everyone will just need a new prescription to get them refilled. I do hope they do this quickly! I heard some good things about Creon, but I also heard so many great things about Ultrase. Marty has done so well with them so it is scary to switch. It is the only enzymes he has been on as well and they have been so amazing! I'll keep you posted on what else I hear!!
 
M

martysmom

New member
So I heard that they might have to change the name of the Ultrase MTs. Similar to what they did to Creon because there was actually more lipase then originally thought. I guess once all that is done and approved then everyone will just need a new prescription to get them refilled. I do hope they do this quickly! I heard some good things about Creon, but I also heard so many great things about Ultrase. Marty has done so well with them so it is scary to switch. It is the only enzymes he has been on as well and they have been so amazing! I'll keep you posted on what else I hear!!
 
K

KeiraMomDad

New member
I understand your frustration, my daughter is on Pancreacarb and they have not been approved yet. What I was told by our CF Clinic folks is that all the companies did get all the information in on time to the FDA and it is a backlog at the FDA that is holding it up. I was told they expect things to be resolved in a bout 2 months. I was also told the CF pharmacy has a good supply to fill orders... I hope that helps.
 
K

KeiraMomDad

New member
I understand your frustration, my daughter is on Pancreacarb and they have not been approved yet. What I was told by our CF Clinic folks is that all the companies did get all the information in on time to the FDA and it is a backlog at the FDA that is holding it up. I was told they expect things to be resolved in a bout 2 months. I was also told the CF pharmacy has a good supply to fill orders... I hope that helps.
 
K

KeiraMomDad

New member
I understand your frustration, my daughter is on Pancreacarb and they have not been approved yet. What I was told by our CF Clinic folks is that all the companies did get all the information in on time to the FDA and it is a backlog at the FDA that is holding it up. I was told they expect things to be resolved in a bout 2 months. I was also told the CF pharmacy has a good supply to fill orders... I hope that helps.
 
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mariahsmommy

New member
If you are already getting your Ultrase prescription filled through CF Services Pharmacy, then they can help you stock up. But, you cannot call and get them to start filling it now, they are saving it for their customers who are already filling with them.
I tried this. lol and they shut down my hopes. I called several pharmacies and had them get in touch with their ordering companies and was able to stock up about 10 months worth of Pancrecarb. They are holding it at the pharmacy and we just fill like normal every month.
 
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mariahsmommy

New member
If you are already getting your Ultrase prescription filled through CF Services Pharmacy, then they can help you stock up. But, you cannot call and get them to start filling it now, they are saving it for their customers who are already filling with them.
I tried this. lol and they shut down my hopes. I called several pharmacies and had them get in touch with their ordering companies and was able to stock up about 10 months worth of Pancrecarb. They are holding it at the pharmacy and we just fill like normal every month.
 
M

mariahsmommy

New member
If you are already getting your Ultrase prescription filled through CF Services Pharmacy, then they can help you stock up. But, you cannot call and get them to start filling it now, they are saving it for their customers who are already filling with them.
<br />I tried this. lol and they shut down my hopes. I called several pharmacies and had them get in touch with their ordering companies and was able to stock up about 10 months worth of Pancrecarb. They are holding it at the pharmacy and we just fill like normal every month.
 
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mariahsmommy

New member
Also, your doc cannot write a new script for Ultrase as of April 28, 2010, but I bet your pharmacy could trade out with another pharmacy or transfer the "old script." Good luck.
 
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mariahsmommy

New member
Also, your doc cannot write a new script for Ultrase as of April 28, 2010, but I bet your pharmacy could trade out with another pharmacy or transfer the "old script." Good luck.
 
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