has anyone tried creatine?

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New member
Jun 6, 2007
Loved one DX
i did just a bit of research so far, it sort of makes sense... has anyone looked into this?
I used a teaspoon a day with juice for a while. Don't know if it helped but didn't hurt. Creatine Monohydrate.
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I've been taking about 5 g/day since May 2007 can't say for certain if it helps or not.
creatine is one of about thirty supplements i'm taking. honestly, creatine is one i iften skip because the supply i have is a powder (messy, especially with crippled hands) and it does not dissolve well in water.

a couple of notes:

on blood tests, they report levels of "creatine kinase" (CK) which is NOT creatine. CK is an enzyme used in processing creatine.

Normal blood levels of CK are about 25-200 U/L. Higher levels indicate muscle damage--when muscles. While the 200 is the upper end of normal serum CK, 500 is only considered "slightly elevated". I think high levels are up in the tens of thousands.

I think i've seen recommendations that creatine should be taken with a high glycemic index carb (bread, bananna, etc...) and some protein. Some studies indicate that very large doses of caffeine negate the benefit of creatine.

Do not overdo creatine. Consuming excessive amounts are said to cause muscle cramping.
when muscles

Doh! what i meant to say is that when muscles breakdown, they release CK into the bloodstream.
My DH was diagnosed at the University of IL in Chicago 8/07. The specialists at the ALS clinic there seem top notch in their knowledge. They gave him a list of vitamins that they suggest their ALS patients take. My husband says that they seem to be helping a little, so I want to pass the list on.

Vit. C 1,000 to 2,000 mg. every day

Vit. E 400 to 800 IU every day

Multi-vitamin every day

Co-enzyme Q-10 100 mg. three times a day

Creatine 5gms/day: must drink 8 to 10 glasses of water a day; may be purchased in health food store; make sure it is made in the U.S. and does NOT contain glutamine

The Creatine is in granulated form, and I agree, is does not dissolve well. My husband downs it quickly and says the taste is not bad (he takes it mixed with apple juice) it is just gritty.

He also has a protein bar and drink most days. The docs told him that whey protein is best.

What a coincidence this topic came up.... My husband is getting ready to start taking creatine also. He used it years ago when he was body building. It will be interesting how it will work for him now. Back then, he grew so big, he was stuck in a roller coaster and they had to use tools to get him out. LOL What memories!

Pam B in Va
I'm new to this website. I have been diagnosed with PMA. I asked the neuromuscular specialist about Creatine. She thinks it does not measure up to the claims made for it.
The creatine I use is a chewable called PowerTabs. There are two flavors grape which isn't bad and orange which I didn't care for. Each chewable is 1250 mg so I take 4/day. I'm thinking of switching to a capsule that is 2250 mg so I can take it with the rest of my supplements morning and night.

I haven't been able to find any studies which have shown that creatine by itself has slowed disease progression or improved survivability. I do know that creatine helps the mitochondria do their job which is one of the proposed paths of neuron failure/death in ALS. For myself I have decided to come at this disease from every front possible which is why creatine is one of my supplements. Does it work? I'm not sure but my progression has been slow enough either because that's the rate I was going to progress or something I'm doing plays a role that I'm sticking with it.
When i first started having symptoms ,my neighbor was a weight lifter and recommended it ,i took the powder with some Gator Aide or other drink mix it ,i did this 2-3 times per day But never noticed much and it is expensive ,like other Supplements in the right amounts . And thats Right High CK does show muscle deterioration in Blood . Geo

I am glad I read this. We will give Tim a try on it. I am like him. What has he got to loose?



I'm new to this website. I have been diagnosed with PMA. I asked the neuromuscular specialist about Creatine. She thinks it does not measure up to the claims made for it.

Dear Boby

Noticed you are new to the forum. My husband has been diagnosed with PMA. I don't know of many PMA's on this site. Could you email me and tell me about yours.
My husband's upper body is affected. Both arms, trunk, neck.

Al, I cannot access the member's list. Also, I misqued on keying in my name: should be Bobby instead of Boby. This is not too important, but I notice that it cannot be changedm with rare excetions. Also, another new member whose husband has PMA wante me to e-mail her. I would prefer to do this directly to her, but don't know how to get her e-mail address. I also cannot access member's profiles. Perhaps I am doing somethint wrong.

Thanks. Bobby C.
Does it help?

My wife has been taking Creatine for over a year now, does it help, who knows. She has Bulbar ALS and was diag. 2 years ago. She can still drive and she is totally mobile, no aids yet. She has lost all her speach and she feeds herself with a PEG tube. So the creatine goes in easily. She also take C, COQ, E and fish oil.
Does it help?

A Dutch study from 2003 concluded that creatine does not help, but the MDA says ( http://www.mdausa.org/research/creatine.html ) :

Two scientific studies have indicated that creatine may be beneficial for neuromuscular disorders. First, a study by MDA-funded researcher M. Flint Beal of Cornell University Medical Center demonstrated that creatine was twice as effective as the prescription drug riluzole in extending the lives of mice with the degenerative neural disease amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease). Second, a study by Canadian researchers Mark Tarnopolsky and Joan Martin of McMaster University Medical Center in Ontario found that creatine can cause modest increases in strength in people with a variety of neuromuscular disorders.

Theres been several clinical trials by the MDA, National Center for Complementary and Alternative Medicine, Columbia U, National Center for Research Resources. The Avicena Group is currently conducting a clinical trial for creatine to treat ALS. NINDS is recruiting for a creatine trial for Parkinson's.

With any supplement, you need to keep an eye out for kidney damage, but I think creatine should be pretty safe.
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