CoQ10 & small nerve neuropathy
 

Today I finally met a Doctor who was compassionate and caring! Update on me .. 2 years ago I was diagnoised with "Idiopathic" small fiber neuropathy by punch biopsy.My new Neurologist spent more then over an hour with me and was refreshingly honest. Because I am otherwise very healthy ,He will not accept my neuropathy as Idiopathic at this time. He wants to do more tests and said he will consult with a Neuromuscular Doctor at this Medical Ctr and will do some research this weekend. (wow) Ok Fast forward.. He recommends I take CoQ10 said to make sure I get the Ubiquinone form for Mitochondrial trtment. I have searched the internet and found this form CoQ10 very expensive. My question is does any one take CoQ10 for small nerve neuropathy, and what is the difference between Ubiquinone and Ubiquinol? The Doctor said to take 1000 mgs twice a day with a tsp of Olive Oil. I do not know anything about Coq10, but I read many PNers on here take it. This dosage seems like alot. Does anyone take Coq10 and how much do you take and does it help? I will wait for a response before I order it..Thank you in advance!

That dose does sound very high.

Ubiquinone is the basic form. Ubiquinol is supposed to be the
activated form. Ubinquinol is still rather controversial and some
think it does not work well.

This link sells both, and has information you can read.

The new water soluble type, like Q-gel at this link enables lower dosing.
http://www.epic4health.com/whatiscoq10.html

Another brand out now that is more soluble is Qunol:
Walmart and Costco have this as well as Amazon.
4 months supply at 100mg a day is around $30.00
http://www.qunol.com/

Those really high doses of older CoQ-10 that does not have
the water solubilizing quality were used in treating some PD patients and some ataxia patients. That form needing olive oil, or some fat to go along with it, is not as current as the newer
solubilized types.

I think it is odd, that your doctor recommended such a high dose. I wonder if he knows about the newer forms?

Hi Marie
 

Hi, and I am sorry you have PN. I too have it and was the last person to believe these suppliments could help. I have taken coq10 for over a year now and there is marked improvement.
However your dose does seem high that the doctor recommended. I would call and ask if he said that, or meant 100mg.s 2 x day. When I did the research on this, that was a good dose. I would question taking that much. Mrs.D is very knowledgeable about these suppliments, and I would directly ask her as well.
The right combination of suppliments can work. A year ago, I was not walking very well. Now it is much better. Take care, and do the research as much as you can. ginnie:grouphug:

Hi Marie.

Im not a exppert at all in supplements like Mrs D. I will tell you I found more than 300mg a day and I usually have to take it after eating a bigger meal like dinner.I started higher dose like your DR and it tore up my stoamch now 300 mg with meal I have no problems.

MrsD
Thank you for your response. Its sounds like my Neuro was right in recommending I get the Ubiquinone form. Not so sure now about the dosage tho. Maybe you are right about him possibily not knowing about the newer forms. This is the first Doc Ive seen in 2 yrs that actually talked to me about supplementation! I will call him to let him know about my concerns. Do you think I should get the ubiquinone form or is the Coq10 others use just as effective? :confused: I hope to get some relief soon.

Hi Ginnie,
Thank you for responding, Im sorry you have PN too. :(.. glad to hear you are responding well to suppliments. Do you take the ubiquinone form, or reg
CoQ10? How much do you take a day? Im trying to find the "right combination" but it gets all so confusing and overwhelming. Dont want to take anything that is going to cause more problems (side effects).For now Im taking all the B's..B12 Methyl, Benfoti B1, B6 , ran out of Folate, mag, fish oil, R-Lipoic Acid , ALCarnitine but not everyday RLA & ALC make me jittery. wish I could take them more often, I beleive they are the supplements that may help the most. Is Coq10 a stimulant? Im wondern how I will make this work..Thanks again. :grouphug:

Hi Mgneck
Glad you are having no problems with the ubiquinone! As MrsD stated, My Neuro is prbly not familiar with the newer forms. Im wondern if I could use the reg Coq10 and get the same results. If you dont mind me asking where you found 300mgs of the Ubiquinone and how much did it cost? Thank you so much..Marie

We are talking major bucks here ...

example: 600mg:
http://www.puritan.com/co-q-10-055/c...-600-mg-030453

http://www.iherb.com/Healthy-Origins...-Softgels/4130

Perhaps 200mg of this would do compared to the old form:
http://www.epic4health.com/qgel-doub...0mg-coq10.html

I'd call him up and explain... Qunol 100mg a day should be enough IMO.

I ordered from puritan pride but the label shows it as Ubisuinol 300 mg -- it was buy one get one free $65 for a two month supply -- someone told me to buy in this from its better absorbed ---then ubiquinone but i maybe wrong .

Hi, I just started taking Qunol Mega CoQ10 100mg. Mrs. D's advice on what to take.

If I were you I would call your doctor and ask him why he suggested what he did and not what has been suggested here. I do tell my doctor I am on this site and what we suggest to one another. He is usually ok with things and agrees that certain supplements are worth trying. However, he has never suggested using any only says yes when I bring him information from this site.

I am really happy for you that you found a doctor you seem to like and he listens. I know how hard it is to find a good doctor. I am lucky I now have a rheumo and neuro that I love. They actually communicate with one another about my case.:) Good Luck with everything!:hug:

Hi Marie
 

I take the regular kind of Co Q 10, 100mg, twice a day. I never got any side effects from it at all. PN in general is definately better a year later. I was close to not walking at all. Now I am walking...something is working and I believe it is this suppliment and so does my doctor. I use the "finest" brand from Walgreens. Yes expensive, but worth it. I sure hope this works for you too. I had about given up, and was looking at a wheelchair. I take several other suppliments as well. Let me know how you do and what kind your doctor finally settled on. It is worth a try! ginnie

Question on Dose of CoQ10 for MrsD
 

Earlier I mentioned I was on a Statin for cholesterol, 40 mg of Atorvastatin daily, and you mentioned I should be taking CoQ10. I have been taking Nature's Bounty CoQ10 200 mg with "Q-Sorb" twice a day for a couple of weeks. More recently, my order of Doctor's Best High Absorption (BioPerine which is a black pepper extract to help absorption) Fermented Japanese CoQ10 100mg arrived and I will be switching to this when my Doctor's Bounty runs out. Directions say take 1oo mg with fatty meal to help absorption once a day.

What general dose or range of CoQ10 would you think helpful for someone on Statin?

Thanks,

Mike

I think at least 300mg of non-solubilized form daily.

The new water solubilized type like Qunol, or Q-gel, you could possibly get by with 100mg a day.

I saw on one site an estimate that patients on statins, will lose 50% of their own ability to make CoQ-10 themselves within 5 yrs on a statin. This is only an estimate, and 40mg of Lipitor is quite a bit, so you could be lower than that.

I take 200 mg. COQ10 once a day. The soft gel type, it does help me but it took months before I noticed any difference. I take so many supplements that it is difficult for me to pin point which ones work the best for me. My neurologist told me that the B12 5000 mcg. And the COQ10 probably was the reason my constant nerve spasms up my legs quit . I am still trying to figure out myself. God bless !

Hi amike
 

I take coq10, once a day, 300mgs. the gel type and B12shots weekly. I don't know which helped me the most. Take several others as well. I do hope your pn gets better, mine did. I wish you all the best. ginnie

[QUOTE=Beachbum65;998700]I take 200 mg. COQ10 once a day. The soft gel type, it does help me but it took months before I noticed any difference. I take so many supplements that it is difficult for me to pin point which ones work the best for me. My neurologist told me that the B12 5000 mcg. And the COQ10 probably was the reason my constant nerve spasms up my legs quit . I am still trying to figure out myself. God bless !
Hi beachbum, glad to hear your doing better. Im starting to take 100 mg of coq10 again, hopefully it will help. I was taking 5000mcg of methycomb/b12 but my neurologist told me to stop taking it because my B12 blood count was too high (1895):rolleyes: but I am taking 2000mcg a day anyway. Did you have your b12 checked and is it high? Not many neurologist believe in taking b12 or other supplements for sfn. I hope someday we all find some relief from this horrible pain. thanks for your respons.

Hi Ginnie
Im just seeing your response today. Glad to hear you are doing better! What else have you been taking besides the coq10? I am still strugglin with idopathic sfn. For me, neuropathy is mostly painfull sensations, there are days where I feel like giving up too. Im taking 300 mgs lyrica , cant go any higher because of side effects. It maybe helping a little but I still need more pain relief. How did your pn get better? Are you taking any medications for your pn? I was taking 100mgs of Jarrows unbqulinone (sp) Coq10 for a few weeks, but then I stopped because i didnt see any improvement and plus it made me jittery..I am taking other vits I got from MrsD incldg 2000mcgs of Methlycomb-B12 per day. I read you are taking 300mg of coq10 a day. Does it make you jittery? Maybe i will start taking it again but I hope 100mgs is enough to make an improvement. It sounds like your doing better, I hope you continue to do well!!:hug: Thanks for your response. Marie

Hi Marie
 

Yes I am better. There was a combination of things I have done, The vitamines were on top first. Then I use a compounded cream, Lidocane patches, and when it does get bad, I have a narcotics I can and do take. However I try very very hard not to take anything for pain. Tramadol is on hand too, but I don't think that works very well for PN. I don't have this condition as bad as alot of folks here. Only in my left foot, ankle and calf. I really had trouble walking last year, as I have degenerative joint disease in that same foot, with ganglion cysts, that have roots deep inside the ankle. Had two removed, and thats what started the PN. I now have two more, and they can't remove them for fear of making this PN worse. (or RSD)
I can't take lyrica, or Gaba. both tend to make me extremely depressed. I tried both of those several times and just couldn't do it.
I still limit the amount of walking I do, or I do get into some trouble with pain.
All in all much better than last year. Not sure what helped me the most. Sometimes I think taking less in the way of pain killers, lets your own body try to help. Wish I could put a finger on what worked best for me. I sure do wish you all the best, and that you get some relief. ginnie