I was just put on Lovastatin today to see if it will help decrease my C26 levels. I am asymptomatic but want to do anything I can to help further research. Has anyone been on Lovastatin or part of a Lovastatin study?
I was just put on Lovastatin today to see if it will help decrease my C26 levels. I am asymptomatic but want to do anything I can to help further research. Has anyone been on Lovastatin or part of a Lovastatin study?
red Rice Yeast is a natural Statin and is not harmful to the kidneys and has very little mild side effects.
I put myself on it 6 weeks ago and ill know how it is working when i do my labs at the end of the month.
My son was diagnosed at 4 also and has addisons.
He is now 12 and is doing quite well.
If your like to talk im in California, 661-943-2150.
Jamie
B-Rad's Mom
Have you ever been on a statin drug? What kind of side effects are there? I took my first dose of it last night and this morning I feel a little tired but that's all. I probably won't know how my body will respond to it for a little while. My doctor is going to test my C26 in 3 months and check my kidneys and liver at that time too. I figure I'll try to give it 3 months and if there is no significant improvement, I'll do something different like the red rice yeast. Is your son on Lorenzo's oil? How many grams of fat can he have a day?
I took lovastatin for a while and quit for several reasons. There is insufficient research showing that it is effective. I could not eat grapefruit, of all things, while i was taking it. But mostly, i strive to keep the number of drugs that i take to a bare minimum. At the moment, i only take hydrocortisone for the Addison's.
-ted
Dr. Singh from MUSC is doing a study on it and found that it not only stops digression but regenerates the myelin sheath. That was a concluded study in January of 2008. Once I read this I immediately wanted to go on it. I figure it can't hurt, right? My doctor is going to check my C26 in 3 months along with my liver and kidneys for damage. In three months if nothing has changed, I'll go off of it. I just wanted to do something, anything to help. You aren't on the oil either?
I'm on the oil study at Kennedy Kreiger, which means i am either taking the oil or a placebo.
-ted
My uncle is in the study too. I wish that they would just put everybody on it since there are so many different mutations of the disease. I guess they have to do what the U.S. lets them do. Do you mind the oil? Do you take it once or twice a day? Do you have a hard time reaching the amount of calories you're supposed to have when you are so limited on fats? Sorry to ask so many questions. Very curious.
I hate to sound so stupid but please tell me about the lovastatin. When my son (at the age of 22) was diagnosed with ALD we went to KKI and at the time I was so concerned as to what to do for him I didn't get info for myself as a carrier nor did anyone talk to me about it there. I don't even know what C26 levels are. So, if you take lovastatin can your son take it as well. Please let me know where to go to get more information. Thanks, Brenda
The C26 is the long chain fatty acids that we have elevated levels of that breakdown the myelin sheath in the brain. Statin drugs have been tested to see if they can help stop the breakdown. In January 2008, Dr. Singh at MUSC concluded that Lovastatin not only lowers the level of C26 in the brain but also regenerates the myelin sheath after it has been broken down. You can contact Heather at woolwinh@musc.edu for more information. I literally have no idea what I'm doing. After months of researching I've decided I can't sit here and wait for my body to shut down (if it does) and so I'm going to try and do something to stop it before it starts. I have no idea if it will help me or not. I simply want to do something to see if it helps the C26 levels.
The best i can say about taking the oil is that i tolerate it. It is 68 ml (almost 2 oz), which i take in the evening, usually just shooting it down quick and straight. I easily make up for the lack of fat calories by (over)compensating on carbs.
Probably the most difficult thing in the diet is trying to get the right amount of fat grams per day. I monitor everything i eat trying to get an estimate of fat content. When eating out, i can get better nutritional information from the national chains (Subway, Schlotzky's, Applebees, etc) than i can from our nice local restaurants. Unless i do my own cooking, my diet becomes very bland.
Take care.
-ted
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