Enzyme Change...not really working

M

MCGrad2006

Guest
<P>So a few months ago, I got a note from my insurance saying Pancreaze was not a covered drug (but they will fill it one last time). So they did and I mentioned it to my doctor and they werent sure what that meant (whether Pancreaze was not being produced anymore or it really was just not covered). So they called in Zenpep for my next refill...no note from insurance, so yay, I guess. So right after Thanksgiving I switched to Zenpep. At first, I was taking 4 pills with meals...and that made my BM's very hard and somewhat painful. BUT I had less gas and gas pain. So I went down to 3 pills with meals and I was ok for a while, but in the last week...I have had horrible gas and more gas pain...and looser stools. </P>
<P></P>
<P>My husband swears it has a connection to when I also went off of Zyvox. He claims my digestion was fine for the two weeks I was on Zyvox and right after is when the gas started up again. I am not convinced. </P>
<P></P>
<P>So Sunday I started back up with 4 pills with meals and again started with the hard, painful BM's. </P>
<P></P>
<P>Do I need to give the 4 pills with meals time to adjust in my body? Will it get better with time? Or should I also be taking a stool softener with the 4 pill dosage? Or should I switch back to Pancreaze altogether and get my doctor to approve it with the insurance company?</P>
<P></P>
<P>Either way I swing it (3 or 4 pills) I am very uncomfortable. You know what I mean by that. I feel bloated and gassy and smelly...or I just have a sore ass...lol. </P>
<P></P>
<P>I mean, I suppose this could be related to my diet of late with the holidays and all, but that won't change for me for at least two weeks. My husband and I bought a house and are living in a hotel until the wheelchair (for him) renovations are done...thus we are eating out most meals. And obviously I need something to at least tide me over until I start cooking again. My feeling is, it is NOT the diet, because enzymes should work regardless of what I am eating. You know?</P>
<P></P>
<P>PLEASE help!!! <img src="i/expressions/face-icon-small-smile.gif" border="0"></P>
 
M

MCGrad2006

Guest
<P>So a few months ago, I got a note from my insurance saying Pancreaze was not a covered drug (but they will fill it one last time). So they did and I mentioned it to my doctor and they werent sure what that meant (whether Pancreaze was not being produced anymore or it really was just not covered). So they called in Zenpep for my next refill...no note from insurance, so yay, I guess. So right after Thanksgiving I switched to Zenpep. At first, I was taking 4 pills with meals...and that made my BM's very hard and somewhat painful. BUT I had less gas and gas pain. So I went down to 3 pills with meals and I was ok for a while, but in the last week...I have had horrible gas and more gas pain...and looser stools. </P>
<P></P>
<P>My husband swears it has a connection to when I also went off of Zyvox. He claims my digestion was fine for the two weeks I was on Zyvox and right after is when the gas started up again. I am not convinced. </P>
<P></P>
<P>So Sunday I started back up with 4 pills with meals and again started with the hard, painful BM's. </P>
<P></P>
<P>Do I need to give the 4 pills with meals time to adjust in my body? Will it get better with time? Or should I also be taking a stool softener with the 4 pill dosage? Or should I switch back to Pancreaze altogether and get my doctor to approve it with the insurance company?</P>
<P></P>
<P>Either way I swing it (3 or 4 pills) I am very uncomfortable. You know what I mean by that. I feel bloated and gassy and smelly...or I just have a sore ass...lol. </P>
<P></P>
<P>I mean, I suppose this could be related to my diet of late with the holidays and all, but that won't change for me for at least two weeks. My husband and I bought a house and are living in a hotel until the wheelchair (for him) renovations are done...thus we are eating out most meals. And obviously I need something to at least tide me over until I start cooking again. My feeling is, it is NOT the diet, because enzymes should work regardless of what I am eating. You know?</P>
<P></P>
<P>PLEASE help!!! <img src="i/expressions/face-icon-small-smile.gif" border="0"></P>
 
M

mamaScarlett

Active member
IMHO the problem is the new enzymes. You should get back on Pancreaze asap. It was working before, right? Zyvox shouldn't have a major affect on this, maybe temporarily. But it has to be the enzymes. Its criminal that insurance would deny this. They tried to do that to me when Pancrease was phased out to Pancreaze. I had to briefly switch to Creon which messed me up badly for 3 months. Then went back to Pancreaze and threatened the ins company. Haven't had a problem since with my bowels.<br><br>If you didn't need to take stool softeners before while on Pancreaze or watch your diet while on it, then those things aren't the issue. Its the enzymes.<br>Best of luck!-Thats not a fun problem!<br>
 
M

mamaScarlett

Active member
IMHO the problem is the new enzymes. You should get back on Pancreaze asap. It was working before, right? Zyvox shouldn't have a major affect on this, maybe temporarily. But it has to be the enzymes. Its criminal that insurance would deny this. They tried to do that to me when Pancrease was phased out to Pancreaze. I had to briefly switch to Creon which messed me up badly for 3 months. Then went back to Pancreaze and threatened the ins company. Haven't had a problem since with my bowels.<br><br>If you didn't need to take stool softeners before while on Pancreaze or watch your diet while on it, then those things aren't the issue. Its the enzymes.<br>Best of luck!-Thats not a fun problem!<br>
 
P

Printer

Active member
Bloated, gassy and smelly are symptoms of "bacterial overgrowth". Run it past your CF Doctor.

Bill
 
P

Printer

Active member
Bloated, gassy and smelly are symptoms of "bacterial overgrowth". Run it past your CF Doctor.

Bill
 
R

Ratatosk

Administrator
Staff member
We thought we'd be able to switch DS to Pancreaze from Pancrease MTs when they were available; however, BCBS would only cover Creon. We were fortunate it that DS was able to take those without any issues otherwise the pharmacy was telling us we'd have to pay the full amount per month, which was close to a couple thousand dollars! I noticed they're finally now covering Zenpep, too, but still nothing on Pancreaze. You could try filing for an exception.
 
R

Ratatosk

Administrator
Staff member
We thought we'd be able to switch DS to Pancreaze from Pancrease MTs when they were available; however, BCBS would only cover Creon. We were fortunate it that DS was able to take those without any issues otherwise the pharmacy was telling us we'd have to pay the full amount per month, which was close to a couple thousand dollars! I noticed they're finally now covering Zenpep, too, but still nothing on Pancreaze. You could try filing for an exception.
 
B

BikerEd

Guest
I switched from Ultrsa MT20, to Zenpep and I went from 15 with meals to 8 to 10. Also, eating out all the time could cause some problems. What I did find that really works withj them is once a day usally at lunch I eat a yogurt. I prefer the fruit on te bottom not sure if it makes a differnce. Honestly though, I'll take sore azz over the loose greasy smelly run to the bathroom just for thinking of food anyday, lol! Best of luck and if this reads funny sorry buttons on my bb are soo small compared to my sausage thumbs.
 
B

BikerEd

Guest
I switched from Ultrsa MT20, to Zenpep and I went from 15 with meals to 8 to 10. Also, eating out all the time could cause some problems. What I did find that really works withj them is once a day usally at lunch I eat a yogurt. I prefer the fruit on te bottom not sure if it makes a differnce. Honestly though, I'll take sore azz over the loose greasy smelly run to the bathroom just for thinking of food anyday, lol! Best of luck and if this reads funny sorry buttons on my bb are soo small compared to my sausage thumbs.
 
C

CheriD

New member
ah, the joy of enzyme changes, NOT! i was on ultrase mt20's for years. randomly changed from mt12's at some point by my care team. i did ok with them but felt they were "too strong" since 1 often gave me symptoms like you are experiencing so i skipped all together. zenpep absolutely did not work for me. the forumlary of lipase, amalyse, and protease was so far off from what i had been taking. the creon 12's are working just fine. i have gained about 10 pounds since starting on them and can eat fried chicken and mexican food happily when i get cravings for them. the lipase and protease are what work on the proteins and fats so check your old formulation to see how far off your new dosage actually is. if you eat a lot of simple carbs, the amalayse is what you need more of. we can thank the FDA for losing all our old enzymes and requiring everyone to have to recertify their dosages and strengths. i had to apply for patient assistance through the CF foundation to get mine paid for. as for the zyvox, it is HORRIBLE about killing the good bacteria in your GI tract. eating yogurt with live active cultures helps immensely with this. 1 yogurt for every dose. good luck. as we all do, keep experimenting and keep your doctor posted.
 
C

CheriD

New member
ah, the joy of enzyme changes, NOT! i was on ultrase mt20's for years. randomly changed from mt12's at some point by my care team. i did ok with them but felt they were "too strong" since 1 often gave me symptoms like you are experiencing so i skipped all together. zenpep absolutely did not work for me. the forumlary of lipase, amalyse, and protease was so far off from what i had been taking. the creon 12's are working just fine. i have gained about 10 pounds since starting on them and can eat fried chicken and mexican food happily when i get cravings for them. the lipase and protease are what work on the proteins and fats so check your old formulation to see how far off your new dosage actually is. if you eat a lot of simple carbs, the amalayse is what you need more of. we can thank the FDA for losing all our old enzymes and requiring everyone to have to recertify their dosages and strengths. i had to apply for patient assistance through the CF foundation to get mine paid for. as for the zyvox, it is HORRIBLE about killing the good bacteria in your GI tract. eating yogurt with live active cultures helps immensely with this. 1 yogurt for every dose. good luck. as we all do, keep experimenting and keep your doctor posted.
 
M

MCGrad2006

Guest
Thank you all for your responses! I don't believe that I have any type of infection in my gut, since the change worked immediately! But that is something to think about.

@BikerEd...TOTALLY agree. I would MUCH rather have a sore butt, than be the "smelly friend" haha.

I am going to call my doctor tomorrow and see what they say. Part of the problem is that I had an appointment back in December, but they cancelled, saying he had a family emergency and would NOT be back until next week...so he isn't even back yet. Maybe the nurses can help me, but they can't prescribe anything, but they MAY know more about how to get around my insurance company.

@CheriD...I did look at the formulation when I first switched. I think the Lipase was very close to the same, but the protease and amylase were MUCH higher. I swear though...it all started when the FDA made us all switch. I had been on Ultrase FOREVER before that.

And Creons don't work. My hospital carries those when I am "in house" so I have tried them before. I know they make me constipated.
 
M

MCGrad2006

Guest
Thank you all for your responses! I don't believe that I have any type of infection in my gut, since the change worked immediately! But that is something to think about.

@BikerEd...TOTALLY agree. I would MUCH rather have a sore butt, than be the "smelly friend" haha.

I am going to call my doctor tomorrow and see what they say. Part of the problem is that I had an appointment back in December, but they cancelled, saying he had a family emergency and would NOT be back until next week...so he isn't even back yet. Maybe the nurses can help me, but they can't prescribe anything, but they MAY know more about how to get around my insurance company.

@CheriD...I did look at the formulation when I first switched. I think the Lipase was very close to the same, but the protease and amylase were MUCH higher. I swear though...it all started when the FDA made us all switch. I had been on Ultrase FOREVER before that.

And Creons don't work. My hospital carries those when I am "in house" so I have tried them before. I know they make me constipated.
 
J

Jeana

New member
I'd try to get the insurance company to cover Pancreaze, but in the meantime, I'd try miralax and stay with the 4 enzymes. Miralax has been a definite help to me in make stools more normal.
 
J

Jeana

New member
I'd try to get the insurance company to cover Pancreaze, but in the meantime, I'd try miralax and stay with the 4 enzymes. Miralax has been a definite help to me in make stools more normal.
 
D

dbsholes

New member
Different supplements work for different people. I have had great success with Creon for over twenty years. I briefly had to switch back to Pancreaze a couple of years ago and it took a couple of months before I felt "right" on that. And then Creon became available again so I switched back. Unlike you however I have NEVER had difficulty with hard stools or constipation. My problems are always in the smelly, greasy, bulky direction. Such a pretty condition isn't it?

One thing that I would suggest is that you ask to meet with an endocrinologist who works with cf patients and explore how small daily doses of insulin may help the situation. Again, everyone is different, but when I began insulin in 2004 (resulting from CFRD) I suddenly became virtually enzyme-sufficient! No joke. No more grease, no more smell, no more hour-long sessions on the pot. Instead, nice, normal-looking sinkers. Yea!!! Insulin effects virtually every system in the body in ways that nobody fully understands. I have an endocrinologist who SWEARS that every cf patient should be on low levels of insulin whether or not they are CFRD, and I tend to agree. Yes, I know that a daily injection of insulin, in addition to everything we already must do, is the LAST thing that most cf patients want to face - and I would have agreed. But my personal experience is that it is worth a try. I'm talking about maybe 1 or 2 units of basil (long-acting) insulin a day - a VERY small amount that shouldn't effect your blood sugars. And the insulin pens they have now with the VERY small needles make injections pretty easy and totally painless - IF you have a little tummy fat.

Best of luck,
David Sholes
Bennington Vermont
44 DDF508; CFRD since '04; happiest using Creon and insulin for digestive control
 
D

dbsholes

New member
Different supplements work for different people. I have had great success with Creon for over twenty years. I briefly had to switch back to Pancreaze a couple of years ago and it took a couple of months before I felt "right" on that. And then Creon became available again so I switched back. Unlike you however I have NEVER had difficulty with hard stools or constipation. My problems are always in the smelly, greasy, bulky direction. Such a pretty condition isn't it?

One thing that I would suggest is that you ask to meet with an endocrinologist who works with cf patients and explore how small daily doses of insulin may help the situation. Again, everyone is different, but when I began insulin in 2004 (resulting from CFRD) I suddenly became virtually enzyme-sufficient! No joke. No more grease, no more smell, no more hour-long sessions on the pot. Instead, nice, normal-looking sinkers. Yea!!! Insulin effects virtually every system in the body in ways that nobody fully understands. I have an endocrinologist who SWEARS that every cf patient should be on low levels of insulin whether or not they are CFRD, and I tend to agree. Yes, I know that a daily injection of insulin, in addition to everything we already must do, is the LAST thing that most cf patients want to face - and I would have agreed. But my personal experience is that it is worth a try. I'm talking about maybe 1 or 2 units of basil (long-acting) insulin a day - a VERY small amount that shouldn't effect your blood sugars. And the insulin pens they have now with the VERY small needles make injections pretty easy and totally painless - IF you have a little tummy fat.

Best of luck,
David Sholes
Bennington Vermont
44 DDF508; CFRD since '04; happiest using Creon and insulin for digestive control
 
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