Creon5 vs Pancrecarb

[damiensmom]

My Damien was put on Creon5 at 1 month they wanted 1 ounce a day weight gain. Next visit on month later he barely gained in fact was a little under a half a ounce a day and he had so much cramping he would bring hes legs up and curl up and make this hurt noise that i knew was nothing but pain he had enzymes in hes diaper and had such a hard time and gas and malabsorbtion symptoms well my nutritionist gave us Pancreacarbs ms-4 and right away there was a vast improvement. I dont fear for hes comfort when i go to feed him. He doesnt have enzymes in hes diaper,and he gained a ounce a day plus. He sleeps way better and all around is a happier and more comfortable baby. As a mother it has made the wieght of heartache much lighter and of course when babys better mommys better.

 

[anonymous]

Thank you!! I was thinking about changing my daughter off Creon and trying something new. This encourages me to try something else to see if she gains the weight. She is eating a lot just the weight is not coming on.
Sharon, mom of Sophia, 4 and Jack, 2 both with cf

 

[JazzysMom]

Even tho it takes a bit of time to see an improvement once on enzymes it should take that long. If one doesnt see a significant difference then either the dosage needs to be adjusted or they need a a different enzymes. If they all suited all CFers there wouldnt be so many choices LOL

 

[anonymous]

Samantha has also done much better on Pancreacarb 4. When we made the initial change from Creon 5 to Pancreacarbs, she gained 1 1/2 pounds in about a month. The weight gain has leveled off, but she is still better off.

Maria (Sami's mom)

 

[izemmom]

Are any of the other enzymes provided free like Creon 5? Are they covered by insurance? Creon 5 doesn't seem to be doing it for us, either. We did just up the dosage a day ago so we'll see, but I do intend to keep on our cf team about chaging enzymes if that's the appropriate thing to do.

 

[thelizardqueen]

I'm on Creon 25 - is that any different then Creon 5? Maybe its just a higher dose.

 

[damiensmom]

izemmom I myself have ACHESS whitch is welfare insurance and they would not cover pancrecarb offered generic Iwas told by my nutritionist to never accept generic enzymes. C.R.S covers all Damiens meds now including pancrecarbs and xopanes as opposed to albuteral C.R.S is where we go to clinic too childrens rehabilitive services and Ihave 0 finicial responsibility and they give me no problem do u guys have that or do u not qualify I would figure that they would cover what insurance didnt providing you have a facility like that where u are.

 

[damiensmom]

Izemom and it doesnt hurt to try pancrecarb and ask or suggest or even tell your team you would like to try somthing else.

 

[anonymous]

Holly is on Ultrase 12 and Pancrecarb MS 8, the Pancrecarb has worked wonders. I wish they would have given it to me years ago. My son takes Creon 5, I believe the creon 25 you talk about is the same drug just different doseage. He was on creon 10 and they were bigger to swallow and he didn't like it as well. So they changed it to creon 5, he just has to take more of them. CFmama

 

[smoothdave]

i think i need to start payin a bit more attention to my med, i am on creon but i never new there was different strengths?( if that is the right word to use) i dont even no what number mines is.....

 

[JazzysMom]

TO Izemmom: There are other enzymes that have programs available. Eligibility & amount of help varies. There is Ortho-McNeil Patient Assistance Program who provides Pancrease (which is the enzymes I use to use) to patients who meet enrollment criteria. Their number is 800-727-4626; there is Digestive Care Assistance Program which provides Pancreacarb to patients not covered by medical insurance, medicaid or other third party payers. Their # is 610-882-5950 & website is <a target=new class=ftalternatingbarlinklarge href="<a target=new class=ftalternatingbarlinklarge href="<a target=new class=ftalternatingbarlinklarge href="<a target=new class=ftalternatingbarlinklarge href="http://www.digestivecare.com">http://www.digestivecare.com</a>">http://www.digestivecare.com">http://www.digestivecare.com</a></a>">http://www.digestivecare.com">http://www.digestivecare.com</a>">http://www.digestivecare.com">http://www.digestivecare.com</a></a></a>">http://www.digestivecare.com">http://www.digestivecare.com</a>">http://www.digestivecare.com">http://www.digestivecare.com</a></a>">http://www.digestivecare.com">http://www.digestivecare.com</a>">http://www.digestivecare.com">http://www.digestivecare.com</a></a></a></a> ; There is the Rx Cost Reduction Program thru Axcan which provides a rebate of up to $20.00 for out of pocket co pay for a prescription of Ultrase. In addition to this their Comprensive Care Program for CF provides schandishakes or scandicall, ADEKS with the proof of a 30 day supply of Ultrase enzymes. They offer a certificate for a free flutter also. Their # for the comprehensive care is 866-292-2679, the # for rx cost reductions is 877-657-6737 & website for both is <a target=new class=ftalternatingbarlinklarge href="<a target=new class=ftalternatingbarlinklarge href="http://www.axcan.com">http://www.axcan.com</a>">http://www.axcan.com">http://www.axcan.com</a></a> ; Lastly there is the Free Medicine Foundation. They provide info about manufacturer patient assist programs which offer free meds to patients without coverage. Program crtieria varies. The Free Medicine Foundation charges a $5. administrative fee for info on EACH manufacturer. The # is 573-996-3333 & webesite is <a target=new class=ftalternatingbarlinklarge href="http://www.freemedicinefoundation.com">http://www.freemedicinefoundation.com</a>

 

[izemmom]

Thanks Melissa. We have pretty decent insurance (didn't bat an eye at covering TOBI) so I'll assume that the other enzymes mentioned are covered. But, I'm very grateful to have this information in case they're not. I think I'm going to suggest a change in enzyme when I speak to our cf team on Monday. We've got a girl who's gaining like a champ (46 grams yesterday) since the enzyme was upped a few days ago, but she's very's uncomfortable with what seems to be gas pains, especially at night. She's stooling ok, but lets out these very loud, sharp cries and gets all red in the face every so often. That leads to fits of crying and it's getting harder to comfort her. Poor thing. Thanks for the information, everyone!

Tami

Isabelle 3yrs no cf
Emily 9 weeks w/cf

 

[anonymous]

We get Brinly's Ultrase FREE for the first 2 years of life. Our dietian set it up for us at the cf clinc. I would ask your dietian in your cf clinc to do the same and to see if there other brands. Brinly is on 1 capsule per feeding and has no problem with the Ultrase except for a bad bottle that Axcan Scan recalled and replaced? She is 19 months old and weighs 25 pounds!

Blythe
mom to Brinly 19 mo w/cf and Birgess 4 w/o