Enzymes? Zenpep not working!!!

[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.

 

[kitomd21]

We had a similar issue with enzymes and our daughter. She was started on Pancrease (now Pancreaze) at diagnosis then switched to Creon at about a year old due to new doctor preference. Creon DID NOT work for her. Needless to say, it seems one formulation may work for one person but not the next person when it comes to enzymes. Supposedly, according to our doctor, Creon is generally the most tolerated and effective. Again, not so for our daughter. Have you tried Pancrease/Pancreaze?

 

[kitomd21]

We had a similar issue with enzymes and our daughter. She was started on Pancrease (now Pancreaze) at diagnosis then switched to Creon at about a year old due to new doctor preference. Creon DID NOT work for her. Needless to say, it seems one formulation may work for one person but not the next person when it comes to enzymes. Supposedly, according to our doctor, Creon is generally the most tolerated and effective. Again, not so for our daughter. Have you tried Pancrease/Pancreaze?

 

[kitomd21]

We had a similar issue with enzymes and our daughter. She was started on Pancrease (now Pancreaze) at diagnosis then switched to Creon at about a year old due to new doctor preference. Creon DID NOT work for her. Needless to say, it seems one formulation may work for one person but not the next person when it comes to enzymes. Supposedly, according to our doctor, Creon is generally the most tolerated and effective. Again, not so for our daughter. Have you tried Pancrease/Pancreaze?

 

[Rebjane]

I feel for you. Our family will be in a similar situation, soon. My daughter takes Pancrecarb as well. I am going to get some free samples of Zen Pep on Friday try; We still have some Pancrecarb left. Our nutritionist suggested or us to do 50% pancrecarb and 50% Zen Pep to try to stretch out our supply.

The reason Pancrecarb is different is that it is buffered in bicarbonate; it makes it work better so it doesn't break down as easily in the acidic CF stomache. My daughter was on Creon for her first 2 years of life but she always needed a very high dose and her weight gain did not progress to "normal" until we switched to Pancrecarb.

I did call the representative from Digestive Care the makers of Pancrecarb; he said they filed their application to the FDA last year; there final review should be soon; I asked him how long he could not be definitive but said a couple months to 6 months.

I also plan on emailing the FDA. I was too tired to do it today; I need to get my thought together. The more we send in our personal stories the better.

If you are having a financial issue about getting Pancrecarb from a pharmacy in Florida I would contact the Cystic Fibrosis Foundation; they must have someone who can help you finance this; don't stop til you get someone who can help. I don't know if you have a social worker at your CF clinic who could help you obtain those Pancrecarb from the pharmacy in Florida.

I hope this issue gets resolved soon. If you check the CFF website they are of course aware of this situation and it is causing hardship for patients and families...

 

[Rebjane]

I feel for you. Our family will be in a similar situation, soon. My daughter takes Pancrecarb as well. I am going to get some free samples of Zen Pep on Friday try; We still have some Pancrecarb left. Our nutritionist suggested or us to do 50% pancrecarb and 50% Zen Pep to try to stretch out our supply.

The reason Pancrecarb is different is that it is buffered in bicarbonate; it makes it work better so it doesn't break down as easily in the acidic CF stomache. My daughter was on Creon for her first 2 years of life but she always needed a very high dose and her weight gain did not progress to "normal" until we switched to Pancrecarb.

I did call the representative from Digestive Care the makers of Pancrecarb; he said they filed their application to the FDA last year; there final review should be soon; I asked him how long he could not be definitive but said a couple months to 6 months.

I also plan on emailing the FDA. I was too tired to do it today; I need to get my thought together. The more we send in our personal stories the better.

If you are having a financial issue about getting Pancrecarb from a pharmacy in Florida I would contact the Cystic Fibrosis Foundation; they must have someone who can help you finance this; don't stop til you get someone who can help. I don't know if you have a social worker at your CF clinic who could help you obtain those Pancrecarb from the pharmacy in Florida.

I hope this issue gets resolved soon. If you check the CFF website they are of course aware of this situation and it is causing hardship for patients and families...

 

[Rebjane]

I feel for you. Our family will be in a similar situation, soon. My daughter takes Pancrecarb as well. I am going to get some free samples of Zen Pep on Friday try; We still have some Pancrecarb left. Our nutritionist suggested or us to do 50% pancrecarb and 50% Zen Pep to try to stretch out our supply.
<br />
<br />The reason Pancrecarb is different is that it is buffered in bicarbonate; it makes it work better so it doesn't break down as easily in the acidic CF stomache. My daughter was on Creon for her first 2 years of life but she always needed a very high dose and her weight gain did not progress to "normal" until we switched to Pancrecarb.
<br />
<br />I did call the representative from Digestive Care the makers of Pancrecarb; he said they filed their application to the FDA last year; there final review should be soon; I asked him how long he could not be definitive but said a couple months to 6 months.
<br />
<br />I also plan on emailing the FDA. I was too tired to do it today; I need to get my thought together. The more we send in our personal stories the better.
<br />
<br />If you are having a financial issue about getting Pancrecarb from a pharmacy in Florida I would contact the Cystic Fibrosis Foundation; they must have someone who can help you finance this; don't stop til you get someone who can help. I don't know if you have a social worker at your CF clinic who could help you obtain those Pancrecarb from the pharmacy in Florida.
<br />
<br />I hope this issue gets resolved soon. If you check the CFF website they are of course aware of this situation and it is causing hardship for patients and families...
<br />
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