Hi,
Im 25 years old and Ive tested positive for HD. I've been taking creatine, terlhose, and bluebery extract, for about a year, and ive been taking omega-3 for about 3 years. And after hearing about CoQ10 and Creatine working so well together I was thinking about taking that as well. But im no sure what dosage to take. I cant find any on the hd sites. I know its just in trail right now so theres probably no "set" amount. But the website i found that sells the CoQ10 says they sell one that has 60/100 mg softgels. For $38.95 And they say the clincal trial's amount is 600-1200 mg. So how much should i take will i be benifited by taking less than the amount theyre using in the trails? Also is there anything i can do to improve my memory ive been taking these for a while and my memory has yet to improve, i have small twitches every once in a while but not often. Its scary cause im worried about the progression despite all of the supliments.
Thank you for your help
-Alex

Welcome!

That's over $6 per gram. You can buy CoQ10 in powder form for a little over $1 per gram [www.iherb.com]. Sprinkled over food, the powder would likely be better absorbed than the capsule form.

Thanks for the welcome paula, and thanks for a cheaper option for CoQ10, How many scoops of that powder should i take? If i were to get the powder form. I also found a cheaper pill form too on that site you gave me. [www.iherb.com]
Dont know how to create links, but its 100mg/120 softgels for $14.95.
Which would be better?, but i perfer taking pills since im already takin creatine and telhose in powder form. I wish Hdlighthouse.org made a webpage of all the hdac approved CoQ10 and ammount you should take like they did for all of the other suppliments im taking.
Thanks again for your help.

CoQ10 isn't one of Dr. Goodman's preferred supplements and I agree with her. My family members are just taking creatine given the expense of CoQ10 and the lack of clarity on dosage for patients. The high dose in the current clinical trial for Coq10 is prohibitively expensive and in the mouse study, the dosage wasn't as high. Creatine had the best effect in Beal's study with CoQ10 adding a smaller amount of neuroprotection. I'd really like to see some data on the safety, tolerability, and efficacy of people taking both before coming to some conclusions about this.

Remember to discuss the supplements you are taking with your doctor so that he or she can monitor you as needed.

are you exercising as well? just wondering, that is supposed to help. I am also taking the coq10. I figure why not? has the trehalose helped? I am about to order that also. I am taking the supplements too. I am so sorry about your memory. Have you tried ginko phytosome? I would love to hear if you think anything has helped you? I am very scared too. kag

I said that in another thread, that i'd heard questionable things about Q10 for hd, but nobody backed me up. So i'm glad to see my opinion on it isnt completely off.

Dr. M. Flint Beal and colleagues have found that creatine and CoQ10 each exert neuroprotective effects in a mouse model of HD and that neuroprotection increases when both are administered.

Both supplements boost energy metabolism which is known to be impaired in HD patients. In addition, both are antioxidants and oxidative damage is known to be a problem in HD. Creatine and CoQ10 are each in Phase III (final) clinical trials conducted by the Huntington Study Group as a result of promising results in mouse models and Phase I and II trials.

Should both be found effective, doctors and patients will need to know whether they should be taken in combination or whether there is no additional benefit to taking more than one of the supplements.

Creatine and CoQ10 affect cellular energy through different mechanisms. Creatine plays a key role in energy buffering between the mitochondria and the cytosol of the cell which is especially important in cells with a high demand for energy. CoQ10 is a cofactor in the electron transport chain which is part of the process by which energy is produced in the mitochondria. CoQ10 accepts electrons from Complex I and II and transfers them to Complex III.

Dr. Beal and colleagues provided the R6/2 mice with a diet which included two percent creatine or one percent CoQ10 or both and compared the results for the three groups with R6/2 mice which were fed a regular diet. The CoQ10 group did better on the rotorod test of motor performance and survived longer than the control group. The creatine group did better than the CoQ10 group while the group which received both did best of all.

The results suggest that research into whether HD patients would benefit from taking both is worth pursuing. ?If both CoQ10 and creatine show efficacy in ? HD trials, then future studies of the two compounds in combination may be warranted. A combination of the two compounds would also be a promising approach for treating pre-symptomatic individuals, since both compounds are natural products and are well-tolerated with few side effects,? the authors conclude.

-- Marsha L. Miller, Ph.D.
Posted to the HDL: 07-05-2009

Could you explain more Marsha, please?

It's certainly encouraging to think that both might be treatments. The problem I have with taking both is that the current Phase III trials for creatine and CoQ10 both involve high doses which just seems like a lot of stuff to be taking if you add them together. I would like to see a safety and tolerability and dose finding study in which people do take both so we have more to go on.

Why is Q10 not a preffered supplement? You said that up above

Because the creatine results look better in the mice and because CoQ10 is very expensive and because the dose being used in the trial for CoQ10 is high because it is not as bioavailable as one would like in a medication. I would like to see research with the new analogue of CoQ10 which IS more bioavailable. I'm not a doctor and this is just my opinion. I'm not sure CoQ10 it isn't on LaVonne's preferred lists but I think for the same reasons.

k, thanks marsha

okay. for me only then-- I am going to take both. if my choices are to carry on to what I know is before me without even trying- or to give it a shot-- hey man, I am there giving it a shot. thanks kag

I feel similar to kag on the aspect of if theres a chance its gonna help I want to take it. Especially since the factor of my high kag repeat of 49, I live in phoenix, AZ got tested when I was 17 after my father past away from Huntington's at the age of 48. Through lots of mental testing and some physical tests i found out early. It was definatly not the answer i wanted to hear. But I've gotten used to the idea over time. The only part that still scares me is the man whos in charge of the huntingtons group in phoenix, told me I was going to have Juvenille Huntingtons because of my high Kag repeat. And thats why I want to take as much supliments as possible now before anything happens to my motorfunctions. And no Kag I don't work out which I should. Im not sure about the terlhose is doing anyhting different its supposed to improve brain damage, and like i said before my memory is still pretty messed up. My motorskills are fine i can still play the drums on the days that i do, i should probably start doing that again since its definatly a work out, at least the way i play .

From what I've heard a CAG of 49 is within the range for Adult HD. I thought CAG of60 and above was the typical range for JHD.

Oh and also Kag I havent tried ginko phytosome is that for memory too?

Actually my kag repeat may be 54, and my dads was 49. Cant remember it was 9 years ago. I know my kag was higher than my dads.

When I first started posting here, I was depressed and had no energy to do anything I used to like to do, ie. volunteering in my kids classroom, riding my horse, going out with friends. Then I started exercising and taking the same supplements that Will takes, but I also include 600 mg. of COQ10 in the regimen. Other then needing a one hour nap every day, I feel 100% better then I did 6 months ago. There is no way to tell if COQ10 is key to making me feel better, but I say if it's working don't change anything! (By the way, the exercise regimen I do is called Cross Fit. If anyone is interested do a search on the web...it is the best thing I have ever done!!!)

johnny-- call me or private message me. 404-322-7978
so glad to hear other people are trying things. was extremely depressed today. gave partial custody of my children over to their father this afternoon. I was afraid I would be like my mother.anyway- just happy to hear something positive- some days I dont ffeel anything positive about this. kag