Guest guest Posted November 12, 2005 Report Share Posted November 12, 2005 I have not been on for a few months since I have been very busy with putting my Mother in a nursing home, auctioning everything in the house, selling her house & becoming power of attorney, both financially & medically, getting hospice involved, etc. etc.... you get the picture! ( oh yeah, and all long-distance, she lives in St. Louis) But I also have had an increase in severe epigastriun pain, dull not sharp, and weakness & well..... bowel movements that needed assisting going down the commode!!! So after a MRI/MRCP with secretin, convinced I had adenoma carcinoma (& I believe my doctors did as well)....I am pleased to report all was negative & I'm pretty sure I know what was causing the pain & all. About 5 months ago I was on Creon, and then due to changing insurance I went on Ultrase 2 tabs. with every meal. And then due to Ultrase buying their patent back (how weird is that?) I went on Lipram 4500 u caps 2 with every meal & also after my meal, not before or during. It seems strange that there can be so much difference in pills that are supposed to be the same strength, but I am convinced that this is what happened. So thank the powers that be in that company buying their patent back (therefore becoming a name brand, not a generic) & consequently I ended up feeling better!!! So this is what I wanted to tell all of you .....I have been on pancreatic enzymes for over 25 years now, as that is how long I've had this disease, but still I find this remarkable! So if you are having increased pain shop around on enzymes, cause obviously they are not all the same, nor or any of us. Thanks for listening, if this helps just one of you, I will be happy! Cheers!! in ton, S.C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2005 Report Share Posted November 12, 2005 If you check the cystic fibrosis support groups they have numerous articles on the current problems with pancreatic enzyme suppliments. None of them are FDA approved (they were grandfathered in)at this time, strength varies wildly http://www.uspharmacist.com/oldformat.asp? url=newlook/files/Feat/Pancreatic.htm&pub_id=8&article_id=824 also go here and click FDA Enzyme requirement (PDF file) http://www.cff.org/living_with_cf/nutrition_and_cf/ Margaret About 5 months ago I was on Creon, and then > due to changing insurance I went on Ultrase 2 tabs. with every meal. > And then due to Ultrase buying their patent back (how weird is > that?) I went on Lipram 4500 u caps 2 with every meal & also after > my meal, not before or during. It seems strange that there can be > so much difference in pills that are supposed to be the same > strength, but I am convinced that this is what happened. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2005 Report Share Posted November 12, 2005 Sorry, link problem with the pancreatic enzymes article. Hopefully this will work http://tinyurl.com/8uunu " Pharmacists should become aware of the production variances, the allowable limits in product content, and the inequivalence of generic pancrelipase products. Pharmacists should not substitute a generic for a brand-name pancreatic enzyme until FDA-approved bioequivalent generic products become available. " Margaret Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2005 Report Share Posted November 13, 2005 , I'm so sorry to hear about all of your difficulties with your mother - enough to stress anyone to the limit - and then your motility problems because of the enzymes. I remember that you were very concerned about your mother when I spoke to you before and hope that she is well settled into her new surroundings. I'm sure it was a huge adjustment for her and that you've been working hard to make everything right for her. It's such an emotional and mental struggle for people to have to go through a situation like that. I'm facing a very similar quandry right now with my father, and would like your suggestions about it if I could write to you about it offline? It sounds like your recent experience would provide much insight to my siblings and my questions concerning our dad. It's a very interesting problem that you've proved about the enzymes. I've always understood that some work differently than others, i.e., (enteric coated vs. non-enteric coated), but didn't realize that there would be differences in the different enteric coated types, too! So are you saying that it is the Ultrase brand enteric coated enzymes that finally brought you relief from your motility dilemma? I took those for the first two years of CP. That's wonderful news that you don't have adenoma carcinoma, and that it was just a change in enzymes that solved your pain problems. Wow! It's good to hear from you again, and your comments about the enzymes should be helpful to many. With love, hope and prayers, Heidi Heidi H. Griffeth SC State & SC Regional Rep PAI Note: All comments or advice are based on personal experience or opinion, and should not be substituted for consultation with youre medical professional. Quote Link to comment Share on other sites More sharing options...
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