Home Login/Join My Space Help Members Forums Search Today's Active Topics New Since Last Visit

Moderators: Bruce, SusanneW
Go
New
Find
Notify
Tools
Reply
  
Coenzyme Q10
 Login/Join
 
Registered: 08-02-2009
Posts: 204
posted   Reply With QuoteReport This Post  
At the 2008 KDA conference, Dr. K. Fischbeck mentioned that Coenzyme Q10 (known as CoQ10 for short) was one of the substances that could be investigated as a treatment for KD.

Anyone interested in background information on CoQ10 could read the Wikipedia page at
Wikipedia page on CoQ10.

CoQ10 is believed to strengthen cells in patients with certain kinds of heart disease. The (totally unproven) notion was that it might do the same for nerve cells in KD patients.

I'd like to know if anyone has any newer or additional information on any such investigation of CoQ10, or if anyone has tried taking it as a dietary supplement. Thanks.
Picture of Bruce
Registered: 09-28-2005
Posts: 654
posted   Hide PostReply With QuoteReport This Post  
Dan, I take it every day and have for several years. I cannot say whether it helps or not, but it certainly hasn't hurt. My doctor recommended it even though my blood pressure and other vascular functions are normal.
Registered: 02-13-2009
Posts: 5
posted   Hide PostReply With QuoteReport This Post  
Bruce,

What amount should be taken 200mg, 400mg, etc. I started taking it awhile back because I heard that when taking statins, it gets depleted. I have recently stopped taking pravastatin. I believe it was causing more than the norm muscle weakness. Anyone experience that with the statins? Been off 7 wks. now and have noticed strength coming back.
Picture of Bruce
Registered: 09-28-2005
Posts: 654
posted   Hide PostReply With QuoteReport This Post  
I would discuss this with your GP. I currently take 200 mg.
Registered: 08-02-2009
Posts: 204
posted   Hide PostReply With QuoteReport This Post  
Discussing dosage with your doctor is an excellent idea. Most of the studies looking at CoQ10 for congestive heart failure use 50 to 60 mg per day.

I take 50 mg per day. Keep in mind that CoQ10 is pretty expensive, so obviously you don't want to take more than necessary.
Registered: 02-05-2019
Posts: 1
posted   Hide PostReply With QuoteReport This Post  
Bruce, Have you notice a difference on how Charlie Horse affects you. I know that not having enough potassium affects our muscles. I was just diagnosed with KD 2 years ago. The 1st (mis-)diagnosis was ALS. I guess i was one of them that feel thru the cracks of the norm of diagnosing our disease. A mimicker. I've had painful episodes of muscle pains. I'm taking muscle relaxer and added extra dosage of Potassium. I was just only taking a daily combination of not even 1000mg. Way under what required for a "normal" person. Have you have the same problem? Thank you.
Picture of Bruce
Registered: 09-28-2005
Posts: 654
posted   Hide PostReply With QuoteReport This Post  
Fortunately, I have not had cramps in several years. Perhaps I don't have enough muscle left to cramp. :-)
  Powered by Social Strata  
 


Kennedy's Disease Association
PO Box 1105 Coarsegold CA 93614
Tel: 1-855-532-7762
Email: info@kennedysdisease.org