Has anyone any information on 'Creatine Suppliments' I have made recent contact with a man who has KD, he has had it for four years. He has been told by the medical genetics department of the hospital he is attending that this suppliment might help the condition. Any comments or information please.
Graham.

Graham, I have not heard of taking Creatine to combat KD. I did a search on this forum and found one post where someone reported that their husband took Creatine supplements. However, they did not report on any differences since starting the supplement. Keep us posted.

Anyone else out there try Creatine supplements?

Thanks Jameson for your reply. Let's hope someone might know something about it. I will keep you informed without doubt.
Graham.

Hey Guys,

There is no data with regard to the efficacy of creatine for KD. It has not been studied. There is some evidence that is may be helpful in some neurodegenerative diseases (most of these are in mouse models, I believe) and not in others - but there is no overwhelming evidence either way. I believe that there is a clinical trial currently underway dealing with the effect of creatine in Huntington's Disease patients.

The bottom line is that no one knows.

Hi Graham,

I have tried creatine and it is a significant help, but I notice it most when I am exercising. Keep in mind that creatine is used by weightlifters and bodybuilders to enhance muscle recovery after an exercise session. I have tried taking creatine on days when I am not exercising and it doesn't make any difference on those days.

Creatine monohydrate powder can be found at many stores in my area, including even Target and the Giant supermarket; also GNC stores and health food stores.

For my part, I am at the stage of SBMA where I can still walk, bicycle a little, and do a little gardening, but I used to get very sore and crampy the day after exercising; particularly the leg muscles after bending over or bicycling. After reading about creatine extensively, I worked out the following formula:

12 ounces cows' milk or almond milk
1 scoop (10 grams) whey protein powder
2 teaspoons (10 grams) creatine monohydrate
1/2 teaspoon sugar or Splenda

I have found that if I make up one of these shakes before exercising, and then sip on it during exercise and just after, it helps my muscle recovery time significantly. I feel much less sore and crampy the remainder of that day and the next day. I even put it in my water bottle when bicycling.

Of course, your mileage may vary, but I am convinced that specialized muscle nutrition is a good idea for people with SBMA, particularly if you are exercising.

The people at Abbott Labs think so too. Check out the thread on "Ensure Muscle Health" in the "Food and Nutrition" section of the forum.

This message has been edited. Last edited by: Dan B,

Dan, thanks for the info. Have you tried your special concoction without the creatine? I wonder if the other ingredient might help with your cramping/recovery time.

Thank you Ed, Dan and Jameson for your contributions. Since my original posting I have seen it on the net. Thanks Dan for your recipe. I shall pass on our thoughts.
Thanks again.
Graham.

Hi Jameson,
I have tried it without the creatine and it doesn't help the cramps and soreness. The other ingredient, whey protein powder, is just an extract of milk that is high in protein. It is good nutrition but only a small aid for the muscle recovery.

This message has been edited. Last edited by: Dan B,

Here's another aspect of the creatine story. There is another disease called Huntingdon's disease (HD). It has certain similarities to Kennedy's disease (SBMA) because it also involves excessive CAG repeats and accumulation of toxic proteins, but of course it isn't the same thing.

The National Institutes of Health, National Center for Complementary and Alternative Medicine (NCCAM), is doing a study on creatine in Huntingdon's disease. Details at this link: http://clinicaltrials.gov/ct2/show/NCT00026988, but no results yet.

Two comments:

• The study link does contain an interesting clue: the tested daily dose of creatine was 8 grams. This is a bit more than the normal bodybuilder dose of 5 grams, and also a bit more than I take when I exercise. Go figure. Maybe I need to try a higher dose.
• I wish the research establishment for KD/SBMA could get funding for its own study of creatine in Kennedy's disease. I'd certainly volunteer to particpate.

The creatine study in Huntingdon's disease was concluded, and there was no benefit to using creatine in that disease.

Here are the results: http://nccih.nih.gov/research/extramural/crest-e