has anyone tried creatine?

[teresa]

i did just a bit of research so far, it sort of makes sense... has anyone looked into this?

[Al]

I used a teaspoon a day with juice for a while. Don't know if it helped but didn't hurt. Creatine Monohydrate.
A

[ZenArcher]

I've been taking about 5 g/day since May 2007 can't say for certain if it helps or not.

[AHands]

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.

[AHands]

when muscles

Doh! what i meant to say is that when muscles breakdown, they release CK into the bloodstream.

[trying to stay positive]

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.

Linda

[pmbenb83]

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

[Bobby C]

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.

[ZenArcher]

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.

[Geo]

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

[Lorie]

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



Thanks,

Lorie

[hopingforthebest]

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.

Thanks!

[Bobby C]

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.

[Markbreton]

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.
mark

[AHands]

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.

[Al]

Hi Bobby C. I added the extra b for you. Hopefully you'll see this and log in with the Bobby C now. PW is the same. New members do not have access to all the features. We had to add these controls to stop spammers from joining and Private Messaging all the members. Now it is too much trouble for them to post for a couple weeks to get at the list. Sorry for the inconvenience. If your friend wants to she can email me with a request to give you her email to you. Send it to al.pettit@alsforums.com
AL.

[Mary Helen Barr]

I think my father participated in a creatine study at UPMC Pittsburgh, and the study was eventually stopped for lack of results. This was about 5 years ago, and I could be remembering it incorrectly.

[Mary Helen Barr]

Oops, my last comment being said, his neurologist still had him taking creatine every night. He took 7 "horse capsules" every night at dinner.

[Bobby C]

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.

Thanks!
Hello. While I am awaitiing access to the members list and the private messaging feature, I will go ahead and post information on my diaagnosis of PMA.

Symptoims are severe weakness in left left, muscle twitches (upper and lower), and loss of balance (now almost complete.) Tests were MRI's, EMG, nerve conductive study (NCS), spinal tap, many blood tests running the gamut of medical codes, then repeat of EMG and NCS in ALS Clinic in major Texas University Health Science Center. Four neurologists (including neuromuscular specialist) conferred and agreed on diagnosis of PMA.

I began taking Rilutek on November 19, 2007, plus Vitam E, Coenzyme Q-10 and Melatonin. First liver test to assure Rilutek not affecting liver on Decmeber 19, 2007. Results normal. Neuromuscular specialist told me to stop Coenzyme Q-10 because of loose bowl movements. I am also glucose intolerant, at high risk for Type II diabetes (two siblings died from diabetes complications.) I now monitor blood sugar twice weekly. Needing to eat from the bottom of the Diabetis food pyramid (whole grains, fruit and vegetables) provides so much fiber that my stomach gets messed up when fiber combines with Rilutek and vitamins and minerals.

I was prescribed with AFO's but have had trouble using them because I had a bruise and callous on the ball of my right foot - maybe caused by too much load on right leg because of loss of strentgh in left leg. I have seen a podiatrist twice to get part of callous removed and inserts for shoes. Orthotic tech has also put a bubble in right AFO, but this has only complicated the problem. I am trying to decide who I call next, the Orthotic tech or the Podiatrisit.

Taking medication (melatonin) as prescribed at bedtime is problematic because I have a hiatal hernia and cannot drink or eat for two hours before bed time. Any medication has to be taken with only a small siip of water.

We've had grab bars installled in both bath rooms, and in the shower where I bathe. Showering was a challenge before this.

The local ALS coordinator has visited our home to make suggestions on how to better cope with this malady. We thank God for her.

Diagnostic tests began in April, 2007. I started usiing a cain in mid summer, which enabled me to keep up with my wife when walking. Now, I can only use the cain to maneuver in the home. Any walkiing outside is accomplished with a walker. We have also have a wheel chair. Both the walker and the wheel chair are on loan from the local ALS Chapter. This support group has been a God send to us.

I can still driive. We have a motor coach which we use extensively to travel to different parts of the country and to follow our University sports teams. We will be changing our seating at our different sports events from regular seating to mobility impaired seating.

We do not know what the future holds. We have just begun this journey. We do intend to keep our liives as normal as possible, as long as possible.

I hope this information helps. Best wishes to you and your husband.

[ilgal]

Try mixing the powdered or granular creatine in applesauce. I took some kind of supplement years ago and that worked a lot better for me than trying to down a gritty liquid.

[northerngirl]

I am just going to buy on ebay (cheap & easy) CoQu-10, Creatine, and DHEA for mom, what the heck. I want her on b12 also, any other sugestions?:?

[Marjorie R. Wilcox]

Diabetes can be controlled with a high protein diet and excluding artificial sweeteners, white flour, pasta, and sugars. Most "brown" breads contain about half white flour. ALmost everything in the grocery store contains some form of sugar. Even frozen french fries has dextrose (a sugar). If you follow this diet you don't have to count calories or limit portions. My husband has done it for over 2 years now.... takes no medications whatsoever and is 60. He eats natural sugars, like fruit, but along with a protein food. He eats popcorn with butter and parmesan cheese, but along with a protein food. He has ALS and takes no meds either. We are seeing that the benefits of diet far outweigh medications. We feel it is more important to waylay the side effects of meds and be very healthy. He no longer has high blood pressure or high colesterol. His doctors marvel at his good health other than the ALS, (which was passed down to him) Meds are also costly and we prefer to better invest our dollars.

[JAKE]

I've been taking creatine for about 10 months now. I started out with the tablets and my neurologist mentioned that the powder was a lot cheaper, so I've been taking a teaspoon of powder with water, 2 times a day for the last 8 months I suppose. I can't say whether it has helped, but I sure don't think it has hurt anything at all.

[Jono]

I have been meaning to get my father to take this. I doubt youd see a significant difference while taking it, but it shouldnt hurt. Why not do everything you can to help out?
if your kidneys are functioning properly you shouldnt have to worry about taking creatine.
its perfectly safe.
Make sure you are taking a good quality product though as many contain lots of contaminants. Creapure is something you should look into if you arent taking it. Manufactured in Germany(Easily availible in North America) and is of the highest quality creatine you can buy.

[atorcho]

I am new here, was a caregiver (for my mother). We mixed the creatine in applesauce, it was about the only way she liked it.

[sweetmozart]

Creatine is something that we believe in quite strongly. Since my husband was diagnosed, in 2001, he has taken the 5 gram suggested daily dose. Usually we use the powder and put it in his drink. When we travel, we find it much easier to take the pills -- twinlabs has creatine pills. The pills are quite a bit more expensive.

Anyway, if my husband ever misses a day, his overall energy decreases. When he goes back on the creatine, he feels much better.

He goes to an MDA clinic, and the last time we were there, the doctor was telling us that there is renewed thought that creatine does have benefits. She mentioned that there would be studies coming soon.

[northerngirl]

Creatine is recommended a lot for ALS apparently, but it is hard on your kidneys so Mom's clinic said they do not recommend it now if you are taking Lithium, Because it is hard on your kidneys as well.

[cajuntexusa]

My husband has been drinking creatine for a few weeks. The neurologist says there is no scientific proof that it helps. He stopped taking it for a few days and noticed a slight difference and went back on it.

He also takes Vit E, flaxseed, multi vitamin and drinks protein shakes everyday (EAS).

Before the illness, he took all kinds of vitamins for years.

[panamokapal]

i've been using creatine for over 2 yrs now,had als for over 4yrs and i still walk, drive, talk, me and stairs don't get along anymore. anyway, i get creatine from swanson vitamins, 2.2lbs for about $19.00 1 tsp-5 grams, 200 servings and lasts over 3 mos. for me so i think its a great deal. i use 10 grams a day, put it in my coffee and it completely dissolves and i don't even taste it. at this point i'm afraid not to use it