Enzymes

[vstark]

Who are you in a nut shell

Hi,

I'm Valerie, 45, living in northern California, USA. I hope it's ok for me to post here.

I found you guys a couple of months ago while researching pancreatic enzymes, trying to find out why the new FDA formulation doesn't work for me. I have idiopathic pancreatitis, most likely inherited. There doesn't seem to be any equivalent forum for pancreatitis. I don't know anybody else who has it, so I've been working off memories of my mother's health issues. (My sister didn't get it, lucky her!) It's been very helpful to read about how you cope with the "pancreas part" of CF. I feel a lot less alone.

I called the manufacturer of Creon, Solvay. They're part of Abbott Laboratories now. I reached a pharmacist in their customer service department. She told me that the FDA had them retest for potentcy and then relabel. According to her, this means that they didn't actually change the ratio of the enzymes at all. If this is the case, then the trouble I'm having must be because they took out the mineral oil. Rather than the amylase being too high for me now, as I've been assuming, it sounds like it might be the lipase.

So I have another experiment to try - taking the Creon with something fatty. Has anyone tried that? I've been trying some OTC enzymes recommended by a doctor and they seem ok other than a bit of acid stomach, but I would feel more comfortable if the FDA approved ones were useable, too. It'll probably be another few weeks before I nerve myself up to try the Creon again, as I was in a lot of pain.

Is anybody interested in sharing results? If you had/are having trouble with the new meds, what did you do/are you doing about it?

Thanks for reading all this!

 

[vstark]

Who are you in a nut shell

Hi,

I'm Valerie, 45, living in northern California, USA. I hope it's ok for me to post here.

I found you guys a couple of months ago while researching pancreatic enzymes, trying to find out why the new FDA formulation doesn't work for me. I have idiopathic pancreatitis, most likely inherited. There doesn't seem to be any equivalent forum for pancreatitis. I don't know anybody else who has it, so I've been working off memories of my mother's health issues. (My sister didn't get it, lucky her!) It's been very helpful to read about how you cope with the "pancreas part" of CF. I feel a lot less alone.

I called the manufacturer of Creon, Solvay. They're part of Abbott Laboratories now. I reached a pharmacist in their customer service department. She told me that the FDA had them retest for potentcy and then relabel. According to her, this means that they didn't actually change the ratio of the enzymes at all. If this is the case, then the trouble I'm having must be because they took out the mineral oil. Rather than the amylase being too high for me now, as I've been assuming, it sounds like it might be the lipase.

So I have another experiment to try - taking the Creon with something fatty. Has anyone tried that? I've been trying some OTC enzymes recommended by a doctor and they seem ok other than a bit of acid stomach, but I would feel more comfortable if the FDA approved ones were useable, too. It'll probably be another few weeks before I nerve myself up to try the Creon again, as I was in a lot of pain.

Is anybody interested in sharing results? If you had/are having trouble with the new meds, what did you do/are you doing about it?

Thanks for reading all this!

 

[vstark]

Who are you in a nut shell

Hi,
<br />
<br />I'm Valerie, 45, living in northern California, USA. I hope it's ok for me to post here.
<br />
<br />I found you guys a couple of months ago while researching pancreatic enzymes, trying to find out why the new FDA formulation doesn't work for me. I have idiopathic pancreatitis, most likely inherited. There doesn't seem to be any equivalent forum for pancreatitis. I don't know anybody else who has it, so I've been working off memories of my mother's health issues. (My sister didn't get it, lucky her!) It's been very helpful to read about how you cope with the "pancreas part" of CF. I feel a lot less alone.
<br />
<br />I called the manufacturer of Creon, Solvay. They're part of Abbott Laboratories now. I reached a pharmacist in their customer service department. She told me that the FDA had them retest for potentcy and then relabel. According to her, this means that they didn't actually change the ratio of the enzymes at all. If this is the case, then the trouble I'm having must be because they took out the mineral oil. Rather than the amylase being too high for me now, as I've been assuming, it sounds like it might be the lipase.
<br />
<br />So I have another experiment to try - taking the Creon with something fatty. Has anyone tried that? I've been trying some OTC enzymes recommended by a doctor and they seem ok other than a bit of acid stomach, but I would feel more comfortable if the FDA approved ones were useable, too. It'll probably be another few weeks before I nerve myself up to try the Creon again, as I was in a lot of pain.
<br />
<br />Is anybody interested in sharing results? If you had/are having trouble with the new meds, what did you do/are you doing about it?
<br />
<br />Thanks for reading all this!

 

[Revy]

Who are you in a nut shell

Hi Just throwing this out there but has anyone thought of using enzyme to denaturalize the mucus? From what I know CF is a malfonction that causes the glands to overproduce. So it seems to me that a possible way to deal with this would be to use natural or synthetic enzymes to denaturalyze the mucus before, during or after it is made. Is this possible? Enzyme could prevent and possibly control the production of mucus in the patients body.
Once again this is just an idea I came up with after reading about it.
hope it helps.

 

[Revy]

Who are you in a nut shell

Hi Just throwing this out there but has anyone thought of using enzyme to denaturalize the mucus? From what I know CF is a malfonction that causes the glands to overproduce. So it seems to me that a possible way to deal with this would be to use natural or synthetic enzymes to denaturalyze the mucus before, during or after it is made. Is this possible? Enzyme could prevent and possibly control the production of mucus in the patients body.
Once again this is just an idea I came up with after reading about it.
hope it helps.

 

[Revy]

Who are you in a nut shell

Hi Just throwing this out there but has anyone thought of using enzyme to denaturalize the mucus? From what I know CF is a malfonction that causes the glands to overproduce. So it seems to me that a possible way to deal with this would be to use natural or synthetic enzymes to denaturalyze the mucus before, during or after it is made. Is this possible? Enzyme could prevent and possibly control the production of mucus in the patients body.
<br />Once again this is just an idea I came up with after reading about it.
<br />hope it helps.

 

[Ratatosk]

There was someone here -- Energygal? who used an OTC enzyme. I want to say Yarrow or Jarrow brand...

DS was switched to creon from Pancrease and doesn't appear to have any issues. So I'm not much help.

A local mom's son was having issues with enzymes not being effective and her clinic is having him take mucomyst orally. Apparently the extra thick mucus was causing more issues with digestions and once they started having him take that, he was able to gain weight and have solid stools.

 

[Ratatosk]

There was someone here -- Energygal? who used an OTC enzyme. I want to say Yarrow or Jarrow brand...

DS was switched to creon from Pancrease and doesn't appear to have any issues. So I'm not much help.

A local mom's son was having issues with enzymes not being effective and her clinic is having him take mucomyst orally. Apparently the extra thick mucus was causing more issues with digestions and once they started having him take that, he was able to gain weight and have solid stools.

 

[Ratatosk]

There was someone here -- Energygal? who used an OTC enzyme. I want to say Yarrow or Jarrow brand...
<br />
<br />DS was switched to creon from Pancrease and doesn't appear to have any issues. So I'm not much help.
<br />
<br />A local mom's son was having issues with enzymes not being effective and her clinic is having him take mucomyst orally. Apparently the extra thick mucus was causing more issues with digestions and once they started having him take that, he was able to gain weight and have solid stools.

 

[windex125]

I am re thinkg my Creon, I have not been faithful to using them over the yrs I think I only added them to everythink else 2yrs ago? (I shd realy keep a journal I forget so much) but for the past 2 weeks straight I have been taking them 2 before each meal and the stomache ache started about then, I have GERD/acid reflux and that was acting up as well, but rarely got what I call a child's stomach ache? And now was having them on and off for 2 weeks So yest I didn't take any and you know what I felt fine. So now I am up in the air again confused. But there was plus I did not have that bloaed big belly feeling like if I jsut ate 2 Big Mac's (which I never eat) so now what? Pat CF MAC/staph/hearing loss due to meds/acid reflux/IBS

 

[windex125]

I am re thinkg my Creon, I have not been faithful to using them over the yrs I think I only added them to everythink else 2yrs ago? (I shd realy keep a journal I forget so much) but for the past 2 weeks straight I have been taking them 2 before each meal and the stomache ache started about then, I have GERD/acid reflux and that was acting up as well, but rarely got what I call a child's stomach ache? And now was having them on and off for 2 weeks So yest I didn't take any and you know what I felt fine. So now I am up in the air again confused. But there was plus I did not have that bloaed big belly feeling like if I jsut ate 2 Big Mac's (which I never eat) so now what? Pat CF MAC/staph/hearing loss due to meds/acid reflux/IBS

 

[windex125]

I am re thinkg my Creon, I have not been faithful to using them over the yrs I think I only added them to everythink else 2yrs ago? (I shd realy keep a journal I forget so much) but for the past 2 weeks straight I have been taking them 2 before each meal and the stomache ache started about then, I have GERD/acid reflux and that was acting up as well, but rarely got what I call a child's stomach ache? And now was having them on and off for 2 weeks So yest I didn't take any and you know what I felt fine. So now I am up in the air again confused. But there was plus I did not have that bloaed big belly feeling like if I jsut ate 2 Big Mac's (which I never eat) so now what? Pat CF MAC/staph/hearing loss due to meds/acid reflux/IBS

 

[vstark]

Hi Pat,

I don't know what you mean by a "child's" stomach ache. My trouble with the new Creon 24000 is that I get severe pain in my pancreas after being on it for a day or so. Creon 20 is still the standard by which I measure all other enzymes. It worked really well for me.

The idea of being able to not bother taking your enzymes is now so foreign to me, it isn't even funny!

 

[vstark]

Hi Pat,

I don't know what you mean by a "child's" stomach ache. My trouble with the new Creon 24000 is that I get severe pain in my pancreas after being on it for a day or so. Creon 20 is still the standard by which I measure all other enzymes. It worked really well for me.

The idea of being able to not bother taking your enzymes is now so foreign to me, it isn't even funny!

 

[vstark]

Hi Pat,
<br />
<br />I don't know what you mean by a "child's" stomach ache. My trouble with the new Creon 24000 is that I get severe pain in my pancreas after being on it for a day or so. Creon 20 is still the standard by which I measure all other enzymes. It worked really well for me.
<br />
<br />The idea of being able to not bother taking your enzymes is now so foreign to me, it isn't even funny!

 

[windex125]

I guess I meant a child usually describes a belly ache lower, my pain was higher like at the end of the esophagus, yet it was traveling down. I did not even know there was a new Creon. I guess with being PS for so long I was lax in taking them. But now that I am living longer than expected issues are happening and I need to address them more seriousily. I am breathing with only one functioing lung right now. So everything else to me is secondary, sounds stupid and I don't want it to sound that way. I take care of myself well always have. But I am getting tired of it all with all the new issues. Thanks for your input, I apprecaite it so much when someone answers my postings.

 

[windex125]

I guess I meant a child usually describes a belly ache lower, my pain was higher like at the end of the esophagus, yet it was traveling down. I did not even know there was a new Creon. I guess with being PS for so long I was lax in taking them. But now that I am living longer than expected issues are happening and I need to address them more seriousily. I am breathing with only one functioing lung right now. So everything else to me is secondary, sounds stupid and I don't want it to sound that way. I take care of myself well always have. But I am getting tired of it all with all the new issues. Thanks for your input, I apprecaite it so much when someone answers my postings.

 

[windex125]

I guess I meant a child usually describes a belly ache lower, my pain was higher like at the end of the esophagus, yet it was traveling down. I did not even know there was a new Creon. I guess with being PS for so long I was lax in taking them. But now that I am living longer than expected issues are happening and I need to address them more seriousily. I am breathing with only one functioing lung right now. So everything else to me is secondary, sounds stupid and I don't want it to sound that way. I take care of myself well always have. But I am getting tired of it all with all the new issues. Thanks for your input, I apprecaite it so much when someone answers my postings.

 

[vstark]

It's very easy to feel alone when you're stuck in the house. Having "friends in the computer" can make all the difference.

 

[vstark]

It's very easy to feel alone when you're stuck in the house. Having "friends in the computer" can make all the difference.