generic enzymes

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mistylavon

New member
My daughter was diagnosed w/ CF 1 month ago. We were in AZ when we found out and the pharmacy there gave us Pangestyme for her enzymes. We went to see the pulmonologist in Anchorage on Tuesday, which will be her doctor. He told us that generic's are not FDA approved and they're not as good as brand name and can cause more problems. We've started giving her some Ultrase UT and I'm having a hard time getting her to take them b/c the beads are ALOT bigger than the generic's we have. She really feels them in the food and picks them out and hands them to me.

Does anyone here take generics? Have you noticed any problems w/ them?

Are there any other enzymes that have tiny, tiny beads?
 
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luke

Guest
Misty,

I am pretty sure that generics are "FDA approved" or at least regulated. They are supposed to be the same as brand name drugs, that is why most insurances require generics be used rather than brand names whenever possible. To answer your question, I tried generics once and I did not tolerate well. Stomach cramps, "bathroom issues" and pretty much was miserable for the entire time I tried them. It seems that enzymes are just one of those things that generics aren't the same. But... if you didn't notice any issues, maybe generics are fine in Morgan's case.


luke
 
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julie

New member
Misty, the generic verses brand name depends on the medication you are using and the reason it is Rx'd.

By rule of thumb because of studies done (I believe by the CFF) CFers are told NOOOOOOOOOOOOOOOOOOOOOOOO when it comes to using any type of generic enzyme. It is true that it can cause more problems, isn't as effective and so on.

About the non FDA approved part.... um, I think they must have been confused because that isn't correct. Anything that is by Rx must be FDA approved. But generics enzymes just don't work well for CFers. I would highly recommend you stay away from them.

If your insurance company puts up a fight, have the CF clinic contact them with a reason why generic is not being Rx'd by doctor. A lot of times the insurance companies are fine in covering a brand name if a doctor calls in with a reason.
 
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mistylavon

New member
The pulmonologist gave me papers showing where generic's are not FDA approved and studies that have been done. I also found on ccf.org a press release re: this same thing. I found it by doing a search for generic enzymes. This doc did say it's illegal for pharmacies to substitute without the doc's consent. I spoke w/ a social worker this morning at the Denver CF Center and she told me the same thing. I was talking to her about waiver programs and asked her about this enzyme thing and she said that center doens't allow generic's.
 
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2005CFmom

Super Moderator
Misty,
There are other brand name enzymes out there. My daughter is on Creon, and the beads inside appear to be slightly larger than a grain of sand. Maybe you can get a few samples of different enzymes from your doctor and see if any of them work better for your daughter.
 
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Abby

New member
Misty,

My daughters doctor also said that we are not to use generics for the same reasons already posted here. There are different Ultrase enzymes out there. My daughter is on the MT20's now, but when she was younger she had "regular" ultrase enzymes. I think they also have anUltrase MT12. The regular ultrase are more like the hard coated candy sprinkles that you put on cookies and things. The problem with those are she would need more than just one probably. My daughter got to the point where she was taking 4 capsules at meals. Now she is taking 1 1/2 with the MT20's. Luckily, we don't have to put them in her food anymore. She just pours the contents of the capsule in her mouth and takes a big drink to swallow them. She's been doing that for about a year now.
 
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anonymous

New member
Misty,

My daughter uses Pancreacarb 4's and they are very tiny granules. You might want to try them out.

Maria (mom to Sami, almost 3 w/cf)
 
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blindhearted

New member
As far as enzymes with smaller beads, I dont know. I take Ultrase MT 20 now. My mom said I also picked them out of my food when I was younger too. Maybe the dietician (sp?) at your CF Center can help you find one that will work (of course ask the doctor as well) or give you ideas on another way to give them to her.
 
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eli

New member
Hi Misty, hope this helps.
My daughter was originally put on Pancrease, which are the tiniest little beads but they they caused her to have bad nappy rash. She was then changed to Creon 5, and is doing much better on them.
They are slightly bigger than the pancrease(not sure if its spelt right), but not too much different. We never had a problem giving her either, considering she was 6wks premmie and only weighed 1.325kg(approx 3 pounds).

Eli<img src="i/expressions/face-icon-small-happy.gif" border="0">
 
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anonymous

New member
DS was started off on pancreacarb 4s and those are about the size of tiny grains of sand. He's now on pancrease mt4s and those are quite a bit bigger -- 1/4 size of a grain of rice. But he's used to them. I pop them in his mouth sprinkled on some baby food bananas and the slide right down. LIza
 
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LoveShines4Austin

New member
When Austin was diagnosed at three years old, he took to swallowing the Ultrase MT 4's with no problem. We were lucky enough to not have to open them up. He's now up to MT 20's. We tried generic ONCE. They were not as effective. Now our doctor always checks the "no generic substitutes" box.
 
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anonymous

New member
Thanks for the informative replys. Morgan is doing much better and taking the Ultrase with no problems now. I did ask the doc about the Creon and them being smaller (before she wouldn't take Ultrase well) but he said she'd have to gain more weight first. She's 16 months and weighs almost 21 lbs.
 
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wallflower

New member
Interesting...About 3 years ago, my pharmacist switched me to generic enzymes. I didn't think anything about it, and was on them for a couple of years. Going through my med list one visit, my doctor asked if I was on the Pancrease, and I told him they got switched to a generic - he was very mad, and explained that generics shelf life vary radically in the strength of the enzymes, and that was why they shouldn't be taken.

Turns out my insurance would only cover generic versions of meds, and that is why it was switched to begin with. My doctor had to write a request to the insurance to allow me to get the brand name.

I've been on the brand name for about a year now, and have noticed that my weight gain has gone way up (although I still have some belly problems). The thing I do miss about the generic, is that I never bloated on them (*fond memory of a flat belly...*)
 
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mistylavon

New member
Hi everyone! I know it's been a while since I posted about generic enzymes but I thought I'd give Morgan's update on them. We went to clinic for the first time April 6. Before going to clinic we ended up putting her on the Ultrase enzymes and about a week before we went I switched her back to the generic just as an experiment to see if we could tell a difference. Well, we could, w/ the generic her stools were more formed and her belly didn't get as distended. I told the docs this and they are fine w/ it and said to keep her on the generic if they are working better for her. Her pulmonologist said this generic is the best and most popular of the generics and said the CFF did some studies w/ it a few years back the results were good.

Her GI doc also had us put her on Zantac 2x/day, and that has made a huge difference too. We are so happy, her belly is looking so much better! Does anyone else have their kids on Zantac, how does it seem to be working or helping?
 
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thelizardqueen

New member
I take Zantac. I think its giving me horrible digestive problems. I've been on it for a month now, and have had some pretty bad digestive problems since. I think when I go to see my doc on thursday, I'm going to ask for something else that will do the same job but better.
 
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Salli

New member
Hi There, Archie is on Zantac twice a day - it seems to be helping him. Prior to that he was still showing fat in his poo after taking 2 x creon 5000 so doc put him on Zantac to help with reflux/stomach acid. His weight has been good ever since and enzymes working much better. He's still a bit refluxy but a lot better these days - although I still can't wait for the day that he doesn't vomit anymore! Everyday seems to be one step closer to that though. Liz, can I ask what digestive problems is it giving you? It's so hard to know whether these meds are actually upsetting a baby or doing good as I have never tried anything else.
 
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thelizardqueen

New member
Well, the Zantac has been helping my acid reflux somewhat (althought I still get the acid once and awhile), but its been makeing me really bloated and crampy, but I've had straight diahrea (sp?) since I was put on it. Its almost like I'm both constipated and with diahrea. I think the diahrea problem is making me dehydrated too, because my muscles are starting to ache a bit. Good thing that I drink lots of water, or I would be lost. I should have called my doc sooner, but I have an appt with him anyway on thursday.
 
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