CoenzymeQ10

[SuzieQ]

Can someone tell me what, if any, are the positive benefits of CoenzymeQ10 for PSP? My hubby is willing to give it a try. Should we contact our GP or the neurologist before using it? I would welcome any feedback please.

[ray-wiffen-1958]

hi suzieq

The last time i heard any body talk about coenzymeq10

was at the local psp support meeting so the best people

to ask will be the psp nurse speclist ours was samantha

pavey 01747 841461 she will be able to answer that question

take care ray

[riosenior]

Suzie

If you go on to the PSPA website forum at pspeur.org and do a search of Topics and Comments for CoenzymeQ10 (or COQ10) you will be able to read many thoughts and views about COQ10.

Roger

[jillannf6]

hi suzie

i am tryign a small dose of co e q10 - it may give more energy or even slow down the progressive bit in larger dloses

no known sidei effects or problems wiht it as far as the web sities say

jill x

[SuzieQ]

Thank you all for your responses to my query. Will check it out and let you know how I get on. It is so comforting to know others understand the pressures that this terrible illness puts on both the sufferer and their carers. Take care all of you xx

[PSPA_JillL]

I will get someone to post the link to the statement about COeQ10 it tells you about the research that is going on, cant find it at the minute. I am sure others will tell you about there experiences.

[SuzieQ]

Thanks Jill. You are very kind to take the trouble. Much appreciated. Take care xx

[PSPA_JillL]

I was looking in the wrong place, now found it

pspeur.org/care_and_support...

try this link for some information. I would also discuss with your husbands GP/ specialist they may have valuable experience of peope using it for other conditions.

[Anne_Gant]

My husband visited UCLA last week to see a Neurologist, Dr. Yvette Bordelon, who suggested that we try CoQ10 with him at a megadose of up to 2400 mg a day. She based her recommendation on the preliminary results of ongoing studies of CoQ10. His previous experience was at the 900 mg level, at which he showed immediate improvement in functioning. Over time, the 900 mg dose didn't show any clear evidence that it was helping, so we stopped using it. It is so hard to know what is helping, with the up-and-down nature of PSP.

He has been on the 2400 mg daily dose for a couple of days, and we are hoping for the best here on the west coast of the U.S.A.

[SuzieQ]

Thanks Anne. Your post was very helpful. I spoke to the PSP Nurse here and she advised we should see my hubby's doctor and neurologist before proceeding with the CoQ10. We are seeing the neurologist at beginning August and as my husband is just recovering from yet another chest infection, I think I will leave it until then before we go any further. I hope you have succes with the increased dose for your husband. Fingers crossed eh? Any little improvement has to be a blessing. Take care........x

[Anne_Gant]

The high dose of CoQ10 didn't seem to make a difference for my husband. We stopped using it after a couple of months, and saw no effect from stopping. The disease is relentless; every day we see yet another skill vanish.

Strange how quickly I pay attention to anything that comes along promishing help for Russ. The latest is a cure-all-ills book that promises to cure Parkinson's and ALS. Has anyone tried Hydrogen Peroxide?

Anne in the Pacific Northwest