Hi everybody!
I'm a new user. 25 years old, CF patient, I'll tell you my full story later since it's pretty interesting. I live in Spain, a country where social healthcare (God bless!) gives us all medication for free. But last year Pancrease (20,000x4000x25,000) which I had taken since 1985, stopped being served. "Back order". They said they would have it again at the beginning of this year, but this didn't happen.
When they told me Pancrease wasn't available anymore, it sounded like saying there's no more milk in the stores. I asked what we were supposed to do, and they said everybody had switched to Kreon (8,000x10,000x600) and it worked fine. I was happy for the change, and started taking it. Half the dose, I was told, since it had double as much lipase. "What about the others, amylase and protease?" - "Eh, that doesn't matter, we focus on the lipase". Weird, said I, but ok, let's try this. I tried, and had great stomach aches and diarrhea. Ie, it wasn't working. I called the hospital, and they said "increase the dose, then". Increase it, just like that? Ok then. I did. I started taking just as much Kreon as I had taken Pancrease. No good. The problems were still there. I complained, and was told "Well, not <i>everybody </i>is doing fine. There <i>are </i>actually four other patients that haven't been able to adapt".
The solution was, then, to be given whatever they had still in the pharmacy. It was to expire in December 2005. They gave it all to me... and that's still what I'm taking, now 5 months expired. It's working less strong since it's old, but it kinda works (i have to take more pills).
Finally we've managed to convince the ministry of health in Spain to import some Pancrease from abroad. After a long time, a Pancrease bottle arrived from the Netherlands. Same name, but the stated composition is "5000 U of lipase, 2900 U of amylase and 330 U of protease". I told the pharmacist that was basically half a Kreon capsule, but same proportions, and obviously my body needs the proportions of regular Pancrease. (Why on earth do they make a different medication with the same name??) The ministry replied to us, the measurment was different but this medicine was the very same equivalent. And I have asked them to explain it mathematically, because it defies all logic. No matter if you measure it in units, milligrams or even gallons, if you have 5000 of lipase per 330 of protease, it can never be the same as 5000 of lipase to 25000 of protease!!
I ordered some regular Pancrease from a pharmacy in Israel that ships internationally, and they've just replied it's on back order. It seems the international producer of the basic product which Pancrease is made of, he's out of it, or has stopped making it. I now called the CF Pharmacy in Florida and they tell me regular old Pancrease is not made anymore (it's now MT4, MT 10 and what not, in different proportions), and they're out of Pancrelipase. Ultrase and Lipram seem to be the same, though. But I feel completely lost. They are very expensive (if you take, like me, over 200 pills a month) and I really wonder how you guys in the US make it, to be able to pay for such expensive medications. Not counting on antibiotics, pulmozyme, and all of the other stuff we CF people take.
This is a very long post, sorry for that.
My main question is, what is your experience with pancreatic enzymes? I've always been given it so I never had to choose. Are Lipram and Ultrase good? Any advise? I'll have to get a prescription and buy it somewhere, I guess, but I feel completely lost.
Thanks a million! Best greetings from Spain,
Tisha
I'm a new user. 25 years old, CF patient, I'll tell you my full story later since it's pretty interesting. I live in Spain, a country where social healthcare (God bless!) gives us all medication for free. But last year Pancrease (20,000x4000x25,000) which I had taken since 1985, stopped being served. "Back order". They said they would have it again at the beginning of this year, but this didn't happen.
When they told me Pancrease wasn't available anymore, it sounded like saying there's no more milk in the stores. I asked what we were supposed to do, and they said everybody had switched to Kreon (8,000x10,000x600) and it worked fine. I was happy for the change, and started taking it. Half the dose, I was told, since it had double as much lipase. "What about the others, amylase and protease?" - "Eh, that doesn't matter, we focus on the lipase". Weird, said I, but ok, let's try this. I tried, and had great stomach aches and diarrhea. Ie, it wasn't working. I called the hospital, and they said "increase the dose, then". Increase it, just like that? Ok then. I did. I started taking just as much Kreon as I had taken Pancrease. No good. The problems were still there. I complained, and was told "Well, not <i>everybody </i>is doing fine. There <i>are </i>actually four other patients that haven't been able to adapt".
The solution was, then, to be given whatever they had still in the pharmacy. It was to expire in December 2005. They gave it all to me... and that's still what I'm taking, now 5 months expired. It's working less strong since it's old, but it kinda works (i have to take more pills).
Finally we've managed to convince the ministry of health in Spain to import some Pancrease from abroad. After a long time, a Pancrease bottle arrived from the Netherlands. Same name, but the stated composition is "5000 U of lipase, 2900 U of amylase and 330 U of protease". I told the pharmacist that was basically half a Kreon capsule, but same proportions, and obviously my body needs the proportions of regular Pancrease. (Why on earth do they make a different medication with the same name??) The ministry replied to us, the measurment was different but this medicine was the very same equivalent. And I have asked them to explain it mathematically, because it defies all logic. No matter if you measure it in units, milligrams or even gallons, if you have 5000 of lipase per 330 of protease, it can never be the same as 5000 of lipase to 25000 of protease!!
I ordered some regular Pancrease from a pharmacy in Israel that ships internationally, and they've just replied it's on back order. It seems the international producer of the basic product which Pancrease is made of, he's out of it, or has stopped making it. I now called the CF Pharmacy in Florida and they tell me regular old Pancrease is not made anymore (it's now MT4, MT 10 and what not, in different proportions), and they're out of Pancrelipase. Ultrase and Lipram seem to be the same, though. But I feel completely lost. They are very expensive (if you take, like me, over 200 pills a month) and I really wonder how you guys in the US make it, to be able to pay for such expensive medications. Not counting on antibiotics, pulmozyme, and all of the other stuff we CF people take.
This is a very long post, sorry for that.
My main question is, what is your experience with pancreatic enzymes? I've always been given it so I never had to choose. Are Lipram and Ultrase good? Any advise? I'll have to get a prescription and buy it somewhere, I guess, but I feel completely lost.
Thanks a million! Best greetings from Spain,
Tisha