Co-enzyme Q10: Hi, I was wondering if any of... - PBC Foundation

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Co-enzyme Q10

joannej01 profile image
19 Replies

Hi, I was wondering if any of you have tried Co-enzyme Q10? I recently had my yearly review with my consultant who suggested that this supplement can help with tiredness and fatigue. She did also say that a study in PBC using co-enzyme Q10 had not shown a big improvements but it's still an option for patients to consider and some individuals find helpful. Many thanks.

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joannej01 profile image
joannej01
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19 Replies
Oidra profile image
Oidra

I have probably taken it for at least 20years. I don`t suffer from fatigue and have a lot of energy most days but can`t say if it is because I take co-enzyme or just the luck of the draw. But I would never stop taking it "just in case".

joannej01 profile image
joannej01 in reply to Oidra

Thanks Oidra. I have a pretty active life with work, family life, i also run and have found it harder over the winter period. I don't want to go and spent money on this supplement if it's not necessary or if i can increase my energy levels through food. Can ask why you started taking it in the first place, what dose are you on?

Oidra profile image
Oidra in reply to joannej01

I really can`t remember why!! I take 30mg Co- enzyme with 3 urso, glucosamine sulphate (joints) and cod liver oil every morning with my specialists knowledge. It seems to work for me as I am 78 next month but you are correct in thinking that you could get the same help with the foods you eat. We are all so different which means that what suits one person may be no help to another and supplements can be expensive. So I would never advise anyone to take anything and this is just my personal experience.

Cathyjo profile image
Cathyjo in reply to Oidra

Have you had PBC that long and how much Urso do you take three 300mg a day? I take one in morning and one in evening but I should take three !

Oidra profile image
Oidra in reply to Cathyjo

I was diagnosed in 2000. I take 3 x 250 Urso in the mornings and have done for years otherwise I would forget to take them! I know other people split them but really it is what works for you .

Cathyjo profile image
Cathyjo in reply to Oidra

Do you have other Symptoms like numbness in your arm or your leg for the first hour after I take ursodiol I have like a light feeling and then I’m OK after that until I take another one so I can’t imagine taking it all at one time but I would like to , my life is controlled by this I was diagnosed in November 2017 and I want to live long time don’t we all just looking for answers thanks for your reply. PS I am 65 And live in Florida

Oidra profile image
Oidra in reply to Cathyjo

No I have never experienced any numbness. Just checking , you do take them after breakfast ? I would never take them on an empty stomach.

Cathyjo profile image
Cathyjo in reply to Oidra

I'm learning to eat better and do the right thing but it's hard! Thanks

ninjagirlwebb profile image
ninjagirlwebb

I am on statins and read that it depletes COQ10. I asked my hepatologist if I should take it & he told me there is no definitive proof that it has an impact. So he told me, no.

Scientific studies to determine the effectiveness of coenzyme Q10 in reducing statin-related muscle pain have had mixed results. Some studies show a benefit while other studies show no effect.

mayoclinic.org/diseases-con...

gwillistexas profile image
gwillistexas in reply to ninjagirlwebb

I take statin & I have CoQ10 but I don’t take it. Speaking of statins, there was a PBC conference In Houston a couple weeks ago & they said statins are okay for us to take. I know there’s controversy about statins so that was good to know.

ninjagirlwebb profile image
ninjagirlwebb in reply to gwillistexas

Yes. My hepatologist assured me that statins were perfectly safe for me to go back on. I stopped for a while after pbc diagnosis.

gwillistexas profile image
gwillistexas in reply to ninjagirlwebb

I did also. Started back in February, 20 mg simvastatin

ninjagirlwebb profile image
ninjagirlwebb in reply to gwillistexas

I couldn’t bring it down via diet & exercise. So back to meds.

gwillistexas profile image
gwillistexas in reply to ninjagirlwebb

Same here. Genetic.

rubberglove profile image
rubberglove

Yes I was also advised to take q10 i did for a year and didnt feel any different so stopped taking them

Kevviv profile image
Kevviv

Hi yes I have been taking this for many years, I did stop taking it to see if it made a difference, and yes it did help me, my fatigue was a bit better. It’s worth a try everybody is different.

Miamomma profile image
Miamomma

My gastroenterologist took me off CoQ10..cardiologist had ordered it..because it is processed through the liver and I didn't need that. Just yesterday my gastroenterologist told me due to results of blood panels/hepatic panels/testing results. I do not have PBC.They have ordered an elastography ultrasound to check for fatty liver disease.

AdeleMalcolm profile image
AdeleMalcolm

Hi Joanne. I asked my doc at Kings College and she said there was anecdotal evidence only. She said it was up to my whether to try it or not, but I figured that as the liver has to process all of this and there's no hard evidence I'd just leave it. God luck. Adele

Caseymayr1102 profile image
Caseymayr1102

I've been using CQ10 for aabout a month. I do think it helps some with energy. Give it a try! There's no side effects & even if it helps a tiny bit it's worth it! I buy the Dr's Best CQ10 from Amazon. A 120 count bottle was much cheaper on Amazon!

Best of luck with it!💝

Jules

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