CoQ10 and Spinocerebellar Ataxias

[JP66]

In my never ending search for answers I came across this study today:

onlinelibrary.wiley.com/doi...

CoQ10 and Spinocerebellar Ataxias

For those that want the "Cliff Notes" version here it is . . . CoQ10 showed some minor benefit in reducing symptoms especially in patients with SCA3, but it did not seem to impact disease progression. This was not a clinical trial; it was a study of patients who reported taking CoQ10 on their own.

As always, do NOT take something based on an internet post. Talk to your doctor if you'd like to consider trying this!

[simon111]

Hi Joe

I'm so impressed with you ,you are so inspiring you just don't give up

I havebeen trying so hard ,since my son was diagnosed with Friedrich 's ataxia in July 2015,to find answers and treatment 's etc.I am fighting a losing battle with his doctors to put him on thiamine. I have him on it regardless, I am a member of a support group of parents of fridricks ataxia children. It's worldwide and some of the parents of kids in their late 30s.So I ask their advice etc

I have followed the links you sent me and thank you for that.

I guess I'm feeling so helpless at the moment my drive has left me,I had fought a battle to get him on interferon gamma and was almost there within a week of them starting treatment when the hospital withdrew permission for his cardiologist to start,this was in Ireland not UK

Sorry for sounding of I selfishly wish you were researching FA I'm sure you would get answers

Well done

[Brommie in reply to simon111]

Hi, I have taken 600mg COQ10 for several years now and have found that it makes a huge difference to my energy levels, I use Doctors Best. COQ10 is a recognised supplement for people with Freidricks Ataxia, your son should've been prescribed it. Have you had a referral to a specialist Ataxia centre yet? If you haven't then you need to get one.

[simon111 in reply to Brommie]

My son is under care of GOSH and previously Ireland

None of the docs areally recommending any supplement 's

I have him on coq10 that I get from America. The support group use this brand on their children

Thank you Brommie for your reply I am also waiting for the ot vest to be delivered and I have ordered custom made insoles for him.I bring him weekly to a physio that is working on his scoliosis to try and manage it

[wobblybee in reply to simon111]

I tried both the Balancewear vest, and the OT vest, at the NAF Convention in San Antonio recently🙂 I didn't buy either but I can see a place for both of these vests, because they work on different principles🙂xB

[Roljenphilippines in reply to simon111]

Hi I hope you don't mind me asking but what is an OT vest?

[simon111 in reply to Roljenphilippines]

otvest.com/new-faq

Hi I hope that link works

I hot the vest ...helps to a certain degree but not as advertised

[cdpjpharmacist in reply to Brommie]

My name is Dr. Charles De Peri, Jr. and I am a pharmacist for Qunol CoQ10. I am so glad to hear that taking CoQ10 has helped with your energy levels!

For anyone considering taking CoQ10, it’s important to note that regular CoQ10 supplements are poorly absorbed by the body.

It’s essential to choose a CoQ10 supplement that is both water and fat-soluble to be sure your body is actually absorbing it. Research shows that solubilized formulations of CoQ10 are absorbed better by the body and lead to higher plasma CoQ10 levels.

(Source: ncbi.nlm.nih.gov/pubmed/?te...

Please let me know if you a have any questions about CoQ10.

-Charles De Peri Jr., RPH, PharmD, Qunol

Please note that my comment is provided for informational purposes only. It is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician with any questions you may have regarding a medical condition and never disregard professional medical advice or delay in seeking it because of something you have read.

[jill55 in reply to cdpjpharmacist]

Thank you

[cdpjpharmacist in reply to jill55]

You're welcome!

-Charles De Peri Jr., RPH, PharmD

[Roljenphilippines in reply to cdpjpharmacist]

Hi would Ubiquinol be a good supplementto take for CQ10 defeciency?

[Litty in reply to simon111]

You probably know already but reading your post I remembered what I had read about this study on Friedreich’s and Co q10 and vitamin E working : )

rainbow.coop/library/coenzy...

[Iain_100]

Hi Joe,

I read a similar study last year (it might have been the same one?), and had decided that I would take a CoQ10 supplement, and see if there were any benefits (I was diagnosed with SCA, but it was a "idiopathic" diagnosis).

Eventually, I decided not to take the supplement after all, as I was in Spain at the time (and was often in quite remote spots, where emergency medical aid was not really an option if I needed it in a hurry). So on balance, I decided against taking it.

But, if I ever get settled in the one spot for long enough, CoQ10 is top of my "to try" list.

[wobblybee in reply to Iain_100]

Hi Iain😊 Did you know that some people respond well to CoQ10 because they are actually diagnosed as being deficient? That didn't include me but, just on the off chance that it would help, I took it for a short while. Then, I found out that Ubiquinol is a better alternative ( a highly absorbable form of CoQ10, a better option for women past the menopause) and I changed to that.

Currently, I'm about half way through the first capsules 🙂xB

[jill55 in reply to wobblybee]

I'm sorry if it's already been said but what dosage do you take of ubiquinol ? I'm newly diagnosed with ataxia and am finding my feet so to speak! It was previously thought my balance issues were down to spondylolisthesis but I have deteriorated since my spinal fusion 2 years ago. My neurologist thinks i may have Coeliac ataxia. I was newly diagnosed with coeliac disease in December.They are still running tests. I prefer to be proactive and get ahead of the game in my treatment. This group is a great help thank you to all who contribute.

[wobblybee in reply to jill55]

This wasn't prescribed, so initially I'm wary of exceeding the advised daily dose, which is 100mg. This probably sounds of little benefit compared to other people's dosage but I prefer to introduce it slowly🙂

My daughter has just been diagnosed as being Coeliac. She's now waiting for an appointment for an endoscopy. Log onto Coeliac UK for lots of advice and recipes🙂 Lots of people find symptoms improve dramatically by keeping to a strict Gluten Free diet🙂 Something to bear in mind, even some medications can have an adverse effect on Coeliacs, depending on their makeup. So, if necessary consult with a Pharmacist.

Stay proactive👍😊xB

[jill55 in reply to wobblybee]

Thank you

[Roljenphilippines in reply to jill55]

Hi my friend has Ataxia and I am researching on his behalf. I too am learning about the disease and any treatment available. Ofcoarse the doctors say there is none available but I've learnt not to listen to traditional doctors. I am also on a whole food plant based diet. This fixes many health issues. Look me up on Facebook James Grey. My profile picture is of me and my wife at our wedding.

[Litty]

I have just started taking 600 ubiquinol ( the more easily absorbed in theory) and I think it is helping?? x

[Ginger12]

Hi all

I took part in a COAP (Care of Ataxia Patients) study regarding COQ10 in 2009 via Dr John Ealing through Manchester University. During their study it was found that CoEnzyme Q10 (COQ10 for short) could be beneficial in ataxia, so I've been taking it ever since. I have taken Ubiquinol (which is made from COQ10) but personally I found it to be too potent for me so I've been sticking with COQ10. I think the neurologist can prescribe too. Ataxia UK should be able to help.

I'm a FRIEND of Ataxia UK. Although I don't suffer from Friedricks Ataxia, I know Ataxia UK have done a lot of research. I get a magazine from them and it is sometimes quite useful. I used to go to a support group and a lady there had Friedricks and swore by CHia seeds. I also take these as their only a food stuff. I try and eat healthily ie lots of nuts, seeds, green leafy veg etc etc and exercise. We all have to help ourselves. I do lots of research and have found things out through other ailments such as Parkinsons or MS, as they are neurological too.

As I suffer with CA (cerebellar ataxia) amongst other things, I do try and help myself. I don't know a lot about Friedricks but as someone said seek advice from a specialist ataxia centre if you can.

All the best

[Roljenphilippines in reply to Ginger12]

Hi I like your post and would like to talk more. My Facebook page is James Grey and my profile picture is of me and my wife on our wedding day.

[simon111 in reply to Ginger12]

Can you explain how chiai seeds helped please....as my 15 year old son has friedrichs ataxia

Thank you

[february]

Dear All, I take CoQ10 ansd have Sporadic Cerebellar Ataxia (unknown cause, progressive, symptoms 24/7). I live in the USA and my neurologist recommended 600 mg (300 mg am, 300 mg pm). I think it helps my energy level. I'm going to ask him about switching to Ubiquinol. My best to you...,;o)