how much coq10 is suggested to start? - PSP Association
how much coq10 is suggested to start?
I think it depends on your size. What's available here in the U.S. and over-the-counter is 100mg or 200mg capsules. I'm on the smaller side, so my Neurologist stated I take the 100's. And, he's also very supportive of this supplement in his PSP patients. Hope this helps.
Judy
Thanks for the input - also does any one know the difference between regular capsules and QH (ubiquinol?)
The clinical trials that showed a short term benefit in cognitive problems associated with PSP used 5mg per kg body weight per day. So if one is average of 70 kg one would take about 350mg. Elsewhere, some suggest at least 400mg day.
I think its usually well tolerated but starting at lower doses and gradually building up to this level would be advisable.
I think there are 2 forms of Q10 - namely, Ubiquinone (the cheaper type that is an oxidised form and has to be converted to Ubiquinol in the body) and Ubiquinol (the expensive reduced form).
I remember at the beginning on my wife's PSP diagnosis buying Q10 from the USA (I'm in Oz) because it was far cheaper and available in higher dose capsules ( 400 mg from Sandy's Supplements on eBay). We no longer use it for my wife's condition.
Cheers
If anyone has some firm information that Q10 works for PSP patients please let me know. We stopped it because we couldn't verify it's positive aspects for PSP patients. When one has swallowing issues the less pills that have to go in the better. When you are already on blood pressure meds, dopamine, etc. and have SOME swallowing issues it Q10 really worth it?
Jimbo
Hi Jimbo
As I mentioned above there has been some evidence of Q10 improving the PSP rating anf frontal lobe cognitive function, but while it was clinically significant, it was only a slight improvement. "Short term effects of Q10 in PSP..." published in Mov.Disord. 2008 May 15:23(7) 942-9.
I think you have very similar thinking to myself on these issues of supplements and medications.
I diagnosed my wife with PSP (RS) late 2011 and I did a bit of experimentation with a couple of supplements that I knew had antioxidant claims. I had done some research on the pathology of PSP as a tauopathy, and was tending to see that mitochondrial dysfunction had an important role in neurological diseases. Thus, I gave my wife a couple of these antioxidants that "might" target the mitochondria in neurons. I did this for a couple of months, and then we saw our neurologist in April 2012 to confirm my diagnosis of PSP (which, unfortunately, he did confirm - I wished I had been wrong!!!).
He was happy for me to try the supplements as they were mild neuroprotective agents. He did not recommend any treatment/medication for the PSP symptoms, and I was in complete agreement. I stopped using the supplements soon after, especially as I found they had no effect, and I had a better understanding of the tau protein malfunction.
So, to sum up, I do not use supplements or medications for my wife's PSP, but I would not discourage others using them if recommended by their physician(s). I think I've mentioned elsewhere, I use basic medication like eye drops for her dry eyes, and would always administer pain relief pharmaceuticals if required (at present she only has "pain" from muscle stiffness in the neck and back, but she says she doesn't want pain killers, and manages with heat packs - she's very stoic!). I don't know what the future holds in this regard, but if she had severe muscle spasms etc we would obviously consider medication. However, most medications taken for PSP symptoms have some terrible side effects (although some sufferers do find some relief with these medications). We have discussed her treatment wishes if she succumbs to aspiration pneumonia, and additionally she has said a definite "no" to PEG feeding (a medical news item from USA geriatricians this week also says no to PEG for general dementia patients who are liable to contract aspiration pneumonia).
Obviously, if a PSP sufferer has co-morbidities, like heart problems or diabetes, then medication should be taken, with the proviso that the ones taken for PSP should be assessed for any contraindications.
That was a long "sum up".
I see your wife takes "dopamine" - is that something like sinemet, and is it helping? Often these sort of Parkinson's medications either do not work or only work for a short period with PSP (with the need to keep bumping up the dose). This, of course, is one way neurologists distinguish PSP from Parkinson's in the early stages.
Sorry for this rambling!
All the best
Hi All, well a few years ago it was a big thing to take COQ10 if you were taking Cholesterol tablets as the thoughts were the cholesterol tablets striped the brain of much needed cholesterol, so i put hubby on the CoQ10 thinking this may have caused the PSP? Then i read of some research where they were taking up to 2400mg of CoQ10, so i bulk ordered from the US, Puritan Pride did a fantastic deal on Buy 2 get 3 free plus they sold 600mg tablets which i would squeeze the oil out and spoon feed it to hubby! It wasn't nice and we did this for about a year. Results well he wasn't cured, he didn't talk to me and i couldnt tell if he had improved, What i now know is he is in the Last stage of PSP it has been 3.5 years since diagnoses, he is only 55 years old! so NO i don't think it works for PSP even though the clinical trials say there is improvement ( not cure) and it will cost you thousands of dollars for such a large amount so think twice before committing as i don't think it will be more helpful than a good diet with lots of fish. So sorry for all concerned, stay strong and keep looking!
I have reviewed several articles on Co Q10 and it would appear to have some mild benefit on PSP. I have been taking 200 mg of CoQ 10 for benefits of side effects of low dose Statin ( Crestor 5 mg tiw). In reviewing articles it appears they used large doses of 1200-2400 mg without significant benefit but there were some secondary benefits although mild. Not much downside to high doses in regard to side effects that I can see. So I just ordered some Uqunol brand of c0Q10 at largest size of 200mg. I plan on starting at 400 mg/day and see if any thing improves ... then I may increase dose slowly to 1200 mg and see what happens. It does appear that absorption of compound is best in Ubiquinol type of medication.
I have enough sx that I should be able to see some benefit I hope within several weeks..
I wish the best to all fellow sufferers of this terrible disease .!
Is it ok to ask how long?
When communication is pretty much impossible
How hard is this
I don't know where to start.
When does it start to improve?
