Guest guest Posted October 29, 2004 Report Share Posted October 29, 2004 There is an over the counter supplement you can buy called L-Carnitine which is different than Carnitor. The benefit of the brand name Carnitor is they do a lot of research specifically on mito and how thier drug works for mito pts. I learned that when I went to the UMDF conference. They had a booth there and they had tons of helpful printed information on the disease. The drug reps there even knew about mito. You can do whateve ryou are comfortable with, but if it were me, I would pursue the Carnitor. deb...mom to three great kids and wife to one amazing guy!http://www.lifeofloveproject.org/http://www.heartliftersgallery.com/ Crazy Lizzies!! PURSES! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2004 Report Share Posted October 29, 2004 Dawn, >When 's Rx for Carnitor was just filled they gave us levocarn >10% sol instead of the Carnitor that she has been taking for over >two and a half yrs. I know it's because she is on ohio medicaid. i >have called the phamarcy because the carnitor was pre-authorized >and shouldn't be changed. My question is, has anyone else used the >new generic form and if so is there any difference? The same thing happened with Emilie's prescription this week. She is on Indiana Medicaid, and they will only pay for generics, so I am guessing LCarnitine has just been approved as a generic. Like you, I'm concerned about whether it is truly the same product. Our kids are so sensitive to changes, I don't want to take any chances. I've emailed Dr. Cohen to get his opinion but haven't heard back. If I hear anything, I will let you know. If you hear something first, please share! -- Mom to: Emilie (18), mito--complex IV, cp, ld Kaitlin (18), cp, asthma, a few autonomic symptoms Ian (22) migraines ....and wife to Tim, who has a heart of gold Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2004 Report Share Posted October 29, 2004 Dawn- When I switched medical supply companies they started sending me Levocarnitine single dose vials to make my IV bags. It's made by Gensia Sicor. I complained at first and they just said it was SO much cheaper. I may not be the best person to ask about it though because I wasn't responding symptom wise to Sigma Tau's Carnitor. I've not noticed any difference one way or other using this other brand. They are both Rx. Neither as you know is over the counter. I had wanted to continue to using Sigma Tau's because of all the help they provide to mito patients and research,etc. I've not been happy with this supply company all the way around and am trying to get switched back to the one I had before. It just all boils down to money, which is sad. Hope the change doesn't cause any probs. for you and your children. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2004 Report Share Posted October 29, 2004 Now I am confused. We use the Mayo Pharmacy's product put out by Sigma-Tau Pharmaceuticals, Inc. called Carnitor. Underneath the word Carnitor it says Levocarnitine Oral Solution in parenthesis. Is this the recommended Carnitor or is this the generic form? I have let Dr. Whiteman know we are getting all our products at the Mayo pharmacy and he said that was good cause we could trust their products. But are we using a generic form then??? Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (11 mon.) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) Re: generic Carnitor?? > Dawn- > > When I switched medical supply companies they started sending me > Levocarnitine single dose vials to make my IV bags. It's made by Gensia > Sicor. I > complained at first and they just said it was SO much cheaper. I may not > be the > best person to ask about it though because I wasn't responding symptom > wise > to Sigma Tau's Carnitor. I've not noticed any difference one way or other > using this other brand. They are both Rx. Neither as you know is over the > counter. I had wanted to continue to using Sigma Tau's because of all the > help they > provide to mito patients and research,etc. I've not been happy with this > supply company all the way around and am trying to get switched back to > the one I > had before. It just all boils down to money, which is sad. > > Hope the change doesn't cause any probs. for you and your children. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2004 Report Share Posted October 29, 2004 I believe that if it says Carnitor then it's not generic since I think that's a brand name. The Levocarnitine Oral Solution in parentheses probably just tells what the active ingredient is. Now I am confused. We use the Mayo Pharmacy's product put out by Sigma-Tau Pharmaceuticals, Inc. called Carnitor. Underneath the word Carnitor it says Levocarnitine Oral Solution in parenthesis. Is this the recommended Carnitor or is this the generic form? I have let Dr. Whiteman know we are getting all our products at the Mayo pharmacy and he said that was good cause we could trust their products. But are we using a generic form then??? Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (11 mon.) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) Re: generic Carnitor?? > Dawn- > > When I switched medical supply companies they started sending me > Levocarnitine single dose vials to make my IV bags. It's made by Gensia > Sicor. I > complained at first and they just said it was SO much cheaper. I may not > be the > best person to ask about it though because I wasn't responding symptom > wise > to Sigma Tau's Carnitor. I've not noticed any difference one way or other > using this other brand. They are both Rx. Neither as you know is over the > counter. I had wanted to continue to using Sigma Tau's because of all the > help they > provide to mito patients and research,etc. I've not been happy with this > supply company all the way around and am trying to get switched back to > the one I > had before. It just all boils down to money, which is sad. > > Hope the change doesn't cause any probs. for you and your children. > > > Please contact mito-owner with any problems or questions. Yahoo! Groups Sponsor ADVERTISEMENT Yahoo! Groups Links To visit your group on the web, go to: http://groups.yahoo.com/group/Mito/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2004 Report Share Posted October 29, 2004 Dawn, That's so funny you mentioned this as a week ago when I got the twins' filled, we were given levocarnitine also. I just figured it was the same thing, only generic so I didn't say anything. I would also be interested if there is a difference. The girls are also on Medicaid. Kim - Mom to and Lindsey generic Carnitor?? > > > When 's Rx for Carnitor was just filled they gave us levocarn > 10% sol instead of the Carnitor that she has been taking for over > two and a half yrs. I know it's because she is on ohio medicaid. i > have called the phamarcy because the carnitor was pre-authorized > and shouldn't be changed. My question is, has anyone else used the > new generic form and if so is there any difference? I don't mind > generic for most things but I don't like changing meds she has been > on this long by companies we all know and trust. Any help would be > appreciated. > > Dawn > > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2004 Report Share Posted October 29, 2004 Hi Dawn: Is it from the company RISING? This just happened with Leah. She is on the Beckett program here in Wisconsin. I've written to our metabolic nurse to ask exactly this same question. They must have just come out with this generic form. I thought may be it changed for us because my husband was unemployed and this is Leah's only insurance. And Leah's been on the other carnitor since 11 months of age. If I find anything out from our metabolic nurse/dietician will let you know what I find out. Obviously this is going to happen to everyone who is on MA. Nerenhausen mom to Leah > > > When 's Rx for Carnitor was just filled they gave us levocarn > 10% sol instead of the Carnitor that she has been taking for over > two and a half yrs. I know it's because she is on ohio medicaid. i > have called the phamarcy because the carnitor was pre-authorized > and shouldn't be changed. My question is, has anyone else used the > new generic form and if so is there any difference? I don't mind > generic for most things but I don't like changing meds she has been > on this long by companies we all know and trust. Any help would be > appreciated. > > Dawn > > > > > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2004 Report Share Posted October 29, 2004 The manufacturer on our bottle is " RISING " also. Kim Re: generic Carnitor?? > > > Hi Dawn: > > Is it from the company RISING? This just happened with Leah. She is on > the Beckett program here in Wisconsin. I've written to our > metabolic nurse to ask exactly this same question. They must have just > come out with this generic form. I thought may be it changed for us > because my husband was unemployed and this is Leah's only insurance. > And Leah's been on the other carnitor since 11 months of age. If I find > anything out from our metabolic nurse/dietician will let you know what I > find out. Obviously this is going to happen to everyone who is on MA. > > Nerenhausen > mom to Leah > > > > > > When 's Rx for Carnitor was just filled they gave us levocarn > > 10% sol instead of the Carnitor that she has been taking for over > > two and a half yrs. I know it's because she is on ohio medicaid. i > > have called the phamarcy because the carnitor was pre-authorized > > and shouldn't be changed. My question is, has anyone else used the > > new generic form and if so is there any difference? I don't mind > > generic for most things but I don't like changing meds she has been > > on this long by companies we all know and trust. Any help would be > > appreciated. > > > > Dawn > > > > > > > > > > > > > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2004 Report Share Posted October 30, 2004 Yes, It's from Rising. I just wrote the company an email asking for info because they had no info on their web site. I am very frustrated. Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2004 Report Share Posted October 30, 2004 I just got an email from our metabolic dietician and she stated that the renal patients in their care have been getting the generic brand for a while. She stated that they must be now using it for other disorders. Because it is USP on the label it is rated by the pharmacy companies. So she believes it should be ok for Leah to take. Nerenhausen mom to Leah 31528@... wrote: , Is it from the company RISING? This just happened with Leah. That's the brand that Emilie got. You know, wouldn't it be nice if someone--a pharmacist, doctor, Medicaid, somebody--had told at least one of us this was going to happen and why? At least I know I'm not alone trying to figure it out. -- Mom to: Emilie (18), mito--complex IV, cp, ld Kaitlin (18), cp, asthma, a few autonomic symptoms Ian (22) migraines ....and wife to Tim, who has a heart of gold Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 30, 2004 Report Share Posted October 30, 2004 I just got an email from our metabolic dietician and she stated that the renal patients in their care have been getting the generic brand for a while. She stated that they must be now using it for other disorders. Because it is USP on the label it is rated by the pharmacy companies. So she believes it should be ok for Leah to take. Nerenhausen mom to Leah 31528@... wrote: , Is it from the company RISING? This just happened with Leah. That's the brand that Emilie got. You know, wouldn't it be nice if someone--a pharmacist, doctor, Medicaid, somebody--had told at least one of us this was going to happen and why? At least I know I'm not alone trying to figure it out. -- Mom to: Emilie (18), mito--complex IV, cp, ld Kaitlin (18), cp, asthma, a few autonomic symptoms Ian (22) migraines ....and wife to Tim, who has a heart of gold Quote Link to comment Share on other sites More sharing options...
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