Pancrecarb Enzymes

[creation301]

My daughter has been on pancrecarb for over 3 years. They are the only enzymes that really work. We tried others before this one, and finally got things cf-normal. Now...of course they are not on the approved list.

We have been on zenpep for over a week. NOT WORKING!! The day after starting we have malabsorbed, had terrible tummy aches and since started not eating!!! I am so irritated, frustrated and sad to watch her lay on the floor because her tummy is cramping so bad. Our cf center has not been much help. They want to add more prevacid for a week and then ween her back off (she already takes 15mg BID). We also went up on the enzymes...no help. Argggg!!! Any ideas?

I have called or emailed to the manufactured, fda, and senators. If you have any other ideas for how to help my daughter please let me know. (I did find someone that said we could buy a months supply from a pharamacy in FL. for around $1,200 for a month out of pocket. So we choose between house/eating/living and our daughters comfort???!!! So frustrated.)

Anyway, thanks for listening and understanding.

 

[creation301]

My daughter has been on pancrecarb for over 3 years. They are the only enzymes that really work. We tried others before this one, and finally got things cf-normal. Now...of course they are not on the approved list.

We have been on zenpep for over a week. NOT WORKING!! The day after starting we have malabsorbed, had terrible tummy aches and since started not eating!!! I am so irritated, frustrated and sad to watch her lay on the floor because her tummy is cramping so bad. Our cf center has not been much help. They want to add more prevacid for a week and then ween her back off (she already takes 15mg BID). We also went up on the enzymes...no help. Argggg!!! Any ideas?

I have called or emailed to the manufactured, fda, and senators. If you have any other ideas for how to help my daughter please let me know. (I did find someone that said we could buy a months supply from a pharamacy in FL. for around $1,200 for a month out of pocket. So we choose between house/eating/living and our daughters comfort???!!! So frustrated.)

Anyway, thanks for listening and understanding.

 

[creation301]

My daughter has been on pancrecarb for over 3 years. They are the only enzymes that really work. We tried others before this one, and finally got things cf-normal. Now...of course they are not on the approved list.
<br />
<br />We have been on zenpep for over a week. NOT WORKING!! The day after starting we have malabsorbed, had terrible tummy aches and since started not eating!!! I am so irritated, frustrated and sad to watch her lay on the floor because her tummy is cramping so bad. Our cf center has not been much help. They want to add more prevacid for a week and then ween her back off (she already takes 15mg BID). We also went up on the enzymes...no help. Argggg!!! Any ideas?
<br />
<br />I have called or emailed to the manufactured, fda, and senators. If you have any other ideas for how to help my daughter please let me know. (I did find someone that said we could buy a months supply from a pharamacy in FL. for around $1,200 for a month out of pocket. So we choose between house/eating/living and our daughters comfort???!!! So frustrated.)
<br />
<br />Anyway, thanks for listening and understanding.

 

[kaymadd2]

My daughter, who is 8, has been on Ultrase MT-12 enzymes since she was 3. I just found out today by her pharmacy that those are no longer on the market. Her doctor has not informed us of anything, I had no clue that this was going on. I am very upset about this, because we have been through so much with her. She has done so well on these enzymes and I really don't want to change. Has anyone been given any information from their doctors regarding what is going on or when (or if) they expect these enzymes to be approved?

 

[kaymadd2]

My daughter, who is 8, has been on Ultrase MT-12 enzymes since she was 3. I just found out today by her pharmacy that those are no longer on the market. Her doctor has not informed us of anything, I had no clue that this was going on. I am very upset about this, because we have been through so much with her. She has done so well on these enzymes and I really don't want to change. Has anyone been given any information from their doctors regarding what is going on or when (or if) they expect these enzymes to be approved?

 

[kaymadd2]

My daughter, who is 8, has been on Ultrase MT-12 enzymes since she was 3. I just found out today by her pharmacy that those are no longer on the market. Her doctor has not informed us of anything, I had no clue that this was going on. I am very upset about this, because we have been through so much with her. She has done so well on these enzymes and I really don't want to change. Has anyone been given any information from their doctors regarding what is going on or when (or if) they expect these enzymes to be approved?

 

[martysmom]

My son is also on Ultrase. Our doctor has been supplying us with samples to get us by. I am not too sure how long that will last us! The nurse told me she expects Ultrase to get FDA approval soon, but there might be a name change. For example, my son takes Ultrase MT 20 and it may change to Ultrase MT 23 or some other number. I would call your CF center immediately and ask what to do. Do you get you prescriptions filled at CF services pharmacy? If so, they have enough supples of Ultrase to refill until there is an approval. So sorry you are going through this and had no warning. Ultrase also works so well for my son that I don't want him to switch!!!

 

[martysmom]

My son is also on Ultrase. Our doctor has been supplying us with samples to get us by. I am not too sure how long that will last us! The nurse told me she expects Ultrase to get FDA approval soon, but there might be a name change. For example, my son takes Ultrase MT 20 and it may change to Ultrase MT 23 or some other number. I would call your CF center immediately and ask what to do. Do you get you prescriptions filled at CF services pharmacy? If so, they have enough supples of Ultrase to refill until there is an approval. So sorry you are going through this and had no warning. Ultrase also works so well for my son that I don't want him to switch!!!

 

[martysmom]

My son is also on Ultrase. Our doctor has been supplying us with samples to get us by. I am not too sure how long that will last us! The nurse told me she expects Ultrase to get FDA approval soon, but there might be a name change. For example, my son takes Ultrase MT 20 and it may change to Ultrase MT 23 or some other number. I would call your CF center immediately and ask what to do. Do you get you prescriptions filled at CF services pharmacy? If so, they have enough supples of Ultrase to refill until there is an approval. So sorry you are going through this and had no warning. Ultrase also works so well for my son that I don't want him to switch!!!