Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 this is the drug that is being used along with carnitor in one of hte clinical drug trails that are going on. My son is on it and has been for 2 years now. hugs kenya Joy <j0yeuxx@...> wrote: Hi all- I've never seen a neuro in my adult years, but since lately I feel like sma has been progressing I thought it might be a good idea. I've contacted the people to see the only one in the area. It takes about 3 months to get in. To make a long story short, I just got on e-mail from him asking me if I would be willing to start taking Depakote before coming to see him. This kind of took me by surprise as I have no idea what it is, or why he could suggest it without ever seeing me. Can any of you share your experiences of this? Do any of you take this? I will look into what it is more when I get home. (yes I am bad and typing this from work). I just wanted to know some info from other SMAers who know what it's all about. Thank you. --------------------------------- Bring photos to life! New PhotoMail makes sharing a breeze. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 > I will look into what it is more when I get home. (yes I am bad and > typing this from work). I just wanted to know some info from other > SMAers who know what it's all about. Thank you. here... http://everything2.com/index.pl?node_id=765681 ....i say find another doctor -- Stride, Mercy Ltd. stride@... ICQ# : 29358721 AOL-IM : BardsDirge http://mercy-limited.com " I have this one figured out, that's why the suicide machine is built for two. " -- Hum, You'd Prefer an Astronaut Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 No experience with this but I think it is irresponsible of him to ask you to take a medication before seeing you. He has no idea what other medications you may be on or what other illnesses you may have which may be contraindicated with Depakote. From a two second net search I found this: Most important fact about Depakote Depakote can cause serious or even fatal liver damage, especially during the first 6 months of treatment. Children under 2 years of age are the most vulnerable, especially if they are also taking other anticonvulsant medicines and have certain other disorders such as mental retardation. The risk of liver damage decreases with age; but you should always be alert for the following symptoms: loss of seizure control, weakness, dizziness, drowsiness, a general feeling of ill health, facial swelling, loss of appetite, vomiting, and yellowing of the skin and eyes. If you suspect a liver problem, call your doctor immediately. Depakote has also been known to cause life-threatening damage to the pancreas. This problem can surface at any time, even after years of treatment. Call your doctor immediately if you develop any of the following warning signs: abdominal pain, loss of appetite, nausea, or vomiting. http://www.pdrhealth.com/drug_info/rxdrugprofiles/drugs/dep1125.shtml L Joy wrote: > Hi all- > I've never seen a neuro in my adult years, but since lately I feel > like sma has been progressing I thought it might be a good idea. I've > contacted the people to see > the only one in the area. It takes about 3 months to get in. To make > a long story short, I just got on e-mail from him asking me if I would > be willing to start taking Depakote before coming to see him. This > kind of took me by surprise as I have no idea what it is, or why he > could suggest it without ever seeing me. > Can any of you share your experiences of this? Do any of you take this? > I will look into what it is more when I get home. (yes I am bad and > typing this from work). I just wanted to know some info from other > SMAers who know what it's all about. Thank you. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 Joy: I think the best course is for you to read up on the CARNI-VAL trial (though the information is a little patchy), read up on Depakote, consult with your PCP, who presumably knows your medical history well, and then make an informed decision on what's best for you. I was surprised that any doctor would suggest taking medication before you see him for the first time, but his e-mail suggests he is genuinely trying to help. It's true that there have been some quite dramatic improvements in young children participating in the trials, but it's also true that the researchers suspect timing may be important with this medication (ie. the sooner the treatment is given, the better). They don't KNOW that yet, because they haven't done any trials in adults with SMA, but it is another aspect to consider. As for side effects, EVERY drug has a list of potential side effects, and most drugs can cause serious side effects in very rare cases. Depakote has been approved by the FDA for many years, so I think it's important to keep the risk of side effects in perspective. Since you are not a child, the risks should not be that great, but only a doctor who knows you well can make that judgment. To minimize the risks further, make sure you get the carnitine supplement, and a regular blood test to check everything is OK would also be a good idea. Just my two cents (or yen in my case), Tokyo, Japan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2006 Report Share Posted March 1, 2006 I think it is great that you are sharing the side effects. yes there can be very bad side effects that is why it is so important to not do it on your own. I do know that the level for the medicine is alot less than what is given for siezure patients so the risk is lower. However it is very important to take the carnitor with it. It is irresponsible of a doc to ask you to take it before he sees you. he should see you first, get an assessment then go from there. Kenya Those Two <those2@...> wrote: No experience with this but I think it is irresponsible of him to ask you to take a medication before seeing you. He has no idea what other medications you may be on or what other illnesses you may have which may be contraindicated with Depakote. From a two second net search I found this: Most important fact about Depakote Depakote can cause serious or even fatal liver damage, especially during the first 6 months of treatment. Children under 2 years of age are the most vulnerable, especially if they are also taking other anticonvulsant medicines and have certain other disorders such as mental retardation. The risk of liver damage decreases with age; but you should always be alert for the following symptoms: loss of seizure control, weakness, dizziness, drowsiness, a general feeling of ill health, facial swelling, loss of appetite, vomiting, and yellowing of the skin and eyes. If you suspect a liver problem, call your doctor immediately. Depakote has also been known to cause life-threatening damage to the pancreas. This problem can surface at any time, even after years of treatment. Call your doctor immediately if you develop any of the following warning signs: abdominal pain, loss of appetite, nausea, or vomiting. http://www.pdrhealth.com/drug_info/rxdrugprofiles/drugs/dep1125.shtml L Joy wrote: > Hi all- > I've never seen a neuro in my adult years, but since lately I feel > like sma has been progressing I thought it might be a good idea. I've > contacted the people to see > the only one in the area. It takes about 3 months to get in. To make > a long story short, I just got on e-mail from him asking me if I would > be willing to start taking Depakote before coming to see him. This > kind of took me by surprise as I have no idea what it is, or why he > could suggest it without ever seeing me. > Can any of you share your experiences of this? Do any of you take this? > I will look into what it is more when I get home. (yes I am bad and > typing this from work). I just wanted to know some info from other > SMAers who know what it's all about. Thank you. > A FEW RULES * The list members come from many backgrounds, ages and beliefs So all members most be tolerant and respectful to all members. * Some adult language and topics (like sexual health, swearing..) may occur occasionally in emails. Over use of inappropriate language will not be allowed. If your under 16 ask your parents/gaurdian before you join the list. * No SPAMMING or sending numerous emails unrelated to the topics of spinal muscular atrophy, health, and the daily issues of the disabled. Post message: Subscribe: -subscribe Unsubscribe: -unsubscribe List manager: (Sexy Mature Artist) Email: Esma1999@... oogroups.com List manager: (Sexy Mature Artist) Email: Esma1999@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2006 Report Share Posted March 1, 2006 I would like to think he would write an Rx for some blood work before he writes the script. I would respond and ask what the routine to start it would be and go from there. I can't see a doctor just start sending out scripts I think he may have just wanted to see if you are open to the idea. I am going to see my neurologist and ask about this for myself. I am 33 type III but would like to give it a shot. Terry > It is irresponsible of a doc to ask you to take it before he sees you. he should see you first, get an assessment then go from there. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2006 Report Share Posted March 2, 2006 I think I mentioned this before on here. I had a horrible reaction to the Depakote/Carnitine thingy. After about a month, I slowly developed severe joint point. I couldn't move my arms or even fingers, because it hurt so much. I can move my legs a little, and the joints in my legs hurt too. I stopped Depakote and after 2-3 days, I felt better. My MD doc started me on 300mg of Depakote. No improvement in energy or strength, despite the side effects. I was very disappointed. Eternal Blessings, Meg. * (My Blog: <http://360./pink-tulip@amerite ch.net> http://360./pink-tulip@ameritec h.net) _____ From: [mailto: ] On Behalf Of Kenya Birkle Sent: Wednesday, March 01, 2006 9:43 AM Subject: Re: Depakote? I think it is great that you are sharing the side effects. yes there can be very bad side effects that is why it is so important to not do it on your own. I do know that the level for the medicine is alot less than what is given for siezure patients so the risk is lower. However it is very important to take the carnitor with it. It is irresponsible of a doc to ask you to take it before he sees you. he should see you first, get an assessment then go from there. Kenya Those Two <those2@...> wrote: No experience with this but I think it is irresponsible of him to ask you to take a medication before seeing you. He has no idea what other medications you may be on or what other illnesses you may have which may be contraindicated with Depakote. From a two second net search I found this: Most important fact about Depakote Depakote can cause serious or even fatal liver damage, especially during the first 6 months of treatment. Children under 2 years of age are the most vulnerable, especially if they are also taking other anticonvulsant medicines and have certain other disorders such as mental retardation. The risk of liver damage decreases with age; but you should always be alert for the following symptoms: loss of seizure control, weakness, dizziness, drowsiness, a general feeling of ill health, facial swelling, loss of appetite, vomiting, and yellowing of the skin and eyes. If you suspect a liver problem, call your doctor immediately. Depakote has also been known to cause life-threatening damage to the pancreas. This problem can surface at any time, even after years of treatment. Call your doctor immediately if you develop any of the following warning signs: abdominal pain, loss of appetite, nausea, or vomiting. http://www.pdrhealth.com/drug_info/rxdru gprofiles/drugs/dep1125.shtml L Joy wrote: > Hi all- > I've never seen a neuro in my adult years, but since lately I feel > like sma has been progressing I thought it might be a good idea. I've > contacted the people to see > the only one in the area. It takes about 3 months to get in. To make > a long story short, I just got on e-mail from him asking me if I would > be willing to start taking Depakote before coming to see him. This > kind of took me by surprise as I have no idea what it is, or why he > could suggest it without ever seeing me. > Can any of you share your experiences of this? Do any of you take this? > I will look into what it is more when I get home. (yes I am bad and > typing this from work). I just wanted to know some info from other > SMAers who know what it's all about. Thank you. > A FEW RULES * The list members come from many backgrounds, ages and beliefs So all members most be tolerant and respectful to all members. * Some adult language and topics (like sexual health, swearing..) may occur occasionally in emails. Over use of inappropriate language will not be allowed. If your under 16 ask your parents/gaurdian before you join the list. * No SPAMMING or sending numerous emails unrelated to the topics of spinal muscular atrophy, health, and the daily issues of the disabled. Post message: Subscribe: -subscribe Unsubscribe: -unsubscribe List manager: (Sexy Mature Artist) Email: Esma1999@... oogroups.com List manager: (Sexy Mature Artist) Email: Esma1999@... Quote Link to comment Share on other sites More sharing options...
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