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 CoEnzyme Q10 
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Dear Manymoons,

Welcome, I can't say that I have personal experience with this but I am including a web site that you may find helpful!

http://www.ninds.nih.gov/news_and_event ... 101402.htm


Sat Sep 23, 2006 1:20 pm
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Hi, I apologize for this delay; my Husband was not officially dx'd until Oct. 2006, and I did not know of this Board until a few days ago. Anyway, Dr. Boeve gave my Husband 1,000 mg CoEnzyme Q10, and 800 IU of Vit. E, Aricept, and Provigil, along w/ Lexapro and Klonopin. We know of Namenda, but my Husband is wary of too many meds, plus we heard of side effects of Namenda?
I hope this helps. (Dr. Boeve recently, in attempt to help my Husband w/ an increasingly fast deterioration, offered thoughts on ADD meds or something, I cannot remember, that sounded like a diet drug, but isn't...It was to help increasing sleepiness, etc., which the Provigil is not addressing as well.)
Love Always, WifeLiz


Sun Feb 04, 2007 8:51 pm

Joined: Thu Feb 01, 2007 7:33 pm
Posts: 3
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This is Eric again, waiting for his account to be approved... Jon is not nearly this drug-geeky.

Did Dr. Boeve perhaps suggest Dexedrine? (dextroamphetamine?) It will wake people up, and it works in a different way than the Provigil (modafinil) does. Jon's dad uses both - the Dexedrine works fast and lasts a short time, which gives the Provigil a chance to kick in. Dexedrine *will* keep you awake at night if you take it too late in the day, which Provigil really won't. It's a very rational combo, and Dexedrine has been around for about 70 years.

The stuff works; think "sleeping 20 hours a day" to "sleeping 8 hours a night" in about...three days. He has been taking a *touch* more of his atypical (Zyprexa), but is getting better symptom control without worsened sedation. Yes, it's polypharmacy, but it works.

One *distinct* disadvantage of Dexedrine, from a caregiver's perspective, is that it's regulated by the DEA (in the US) as a Schedule II controlled substance, which means you must take a *paper* prescription to the pharmacy (no fax, no phone), there are only 30 doses dispensed at a time, no refills. This just makes things a little more obnoxious in a life that I'm sure is already *quite* full of things to do.

Namenda (memantine) is a really interesting drug. It's working on a completely different pathway than Aricept/Exelon/Reminyl, and it may prevent cell death through a mechanism known as excitotoxicity. Excitotoxicity is cell death caused by over-activation of certain receptors on the cell. The NMDA receptor is a very hot research topic in depression and dementias. Because this drug is a receptor antagonist, it works directly on the neuron rather than in the space between the neurons like a lot of psychoactive drugs. This may mean that it's more effective at preventing neuron death than other agents. Again, this is somewhat theoretical.

The good news is, Namenda is generally pretty well tolerated - better tolerated than the AChE drugs usually used in dementia. When you see the laundry list of side-effects of drugs for improving cognition, consider that the people taking them are less able to accurately describe their problems firsthand, so a good deal of side-effect data is based on caregiver observations. Namenda is known to cause confusion, dizziness, drowsiness, headache, insomnia, agitation, and/or hallucinations. Oddly, the very conditions Namenda is intended to treat can cause confusion, dizziness, drowsiness, headache, insomnia, agitation, and/or hallucinations, too. Personally, I wouldn't hesitate to try it.

So, back to CoQ10. I could write pages on this topic - it's near and dear to my heart, because I think CoQ10 is the greatest thing since fresh air and sunshine.

The idea behind CoQ10 in LBD and PDD is based on the idea that PD is due, in part, to oxidative stress in the cells, and partly that CoQ10 is essential for energy transport through human cell membranes. Every cell in the body contains CoQ10 (hence it's chemical name, ubiquinone, a quinone that is ubiquitous).

The good news is that there is increasing evidence that CoQ10 is helpful. The press release mentioned above points to one of the seminal papers on CoQ10 in Parkinsonian syndromes. There are several more like it, and others on other neurodegenerative diseases, each of which show a mild positive effect.

Also good is that CoQ10 is *ridiculously* well-tolerated. . . safer than Tylenol, aspirin or water (judging by "therapuetic index", a measure of the toxic dose of a drug divided by the normal therapuetic dose). People have taken up to 3000 mg a day in US-based trials - I'm aware of a Japanese trial where they got an emulsion by IV at something like 8000 mg/day, and the only even remotely common adverse effect is indigestion, probably caused by the oil base that the CoQ10 is formulated into.

There is a study in PD patients that shows there wasn't a significant difference in blood plasma CoQ10 levels between people getting 2400 vs 3000mg/day, so there's no need to take more than 2400mg/day. There's also evidence that CoQ10 can both "recharge" spent Vitamin E and vice-versa, so it's probably smart to take both. Make sure when you buy Vitamin E that you're getting "natural" vitamin E (aka d-alpha-tocopherol, not dl-alpha-tocopherol) so that you're getting the form that is biologically active.


Sadly, there are some downsides. The first is that CoQ10 is breathtakingly expensive as supplements go. . . the absolute cheapest 2400mg/day therapy I've been able to find is $150/month, which, of course, is not covered by insurance (since it's a supplement). The brand used in the most important studies to date is $400/month at this dose.

The next is that the pills are *big* - 600 mg softgels are the size of a small almond. The 400 mg chewable wafers are quite large as well - I believe the size of a couple of stacked quarters. This may be a challenge for some LBD/PD patients. The taste isn't really an issue, though - the wafers are flavored, the softgels are perfectly bland.

The final issue is that the NET-PD trial of 2400 mg/day did not show a benefit that reached statistical significance. This was a major disappointment, especially given the earlier trials that suggested 1200 mg/day slowed deterioration 44% or so, when examining activities of daily living - the earlier trial didn't find much benefit for the motor symptoms, but since we're most interested in behavioral/cognitive decline, I didn't think this was such a big deal). The key takeaway piece from this latest study, though, is that it *may* be effective - there is substantial debate about the trial's design and that their control group may not be completely representative of people with PD in general. I have not yet received my copy of the NET-PD paper, "A randomized clinical trial of coenzyme Q10 and GPI-1485 in early Parkinson disease", but I look forward to reading it.

Bottom line, it's a personal decision at this point. I think it really depends how functional your loved one is at their current stage in the disease and how beneficial a slowing of the functional decline would really be. Jon's dad still has some really exceptional days, and can string them together to be great weeks, and we feel that slowing the decline is worth the financial sacrifice. Not everyone is going to see the same benefit equation we do. We know it's safe - he's been taking escalating doses of CoQ10 for several years to prevent side effects from his cholesterol drug, and his current care team is very on-board with CoQ10 (his psychiatrist is the most avid supporter, oddly). I don't feel like there's a risk in taking it other than throwing away $5/day and there's potentially upside.

Warmest Regards,

Eric

_________________
Jon

My 84 yo father has LBD


Mon Feb 05, 2007 4:44 am
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Post Name Brands, CoEnzyme Q10, others
First of all, thank you for this great info.! My Husband was prescribed at Mayo, a CoEnzymeQ10 called Nature's Bounty, which we've seen in stores. The 200 mg. Soft gelcaps are to be taken 6x a day, but we will certainly check into amt. increase, next visit. My Husband gets these from Mayo pharmacy, which mails it here.
Re the other drug I couldn't remember, it is, as you said,
(Good grief, forgot again?) Dexedrine. My Husband's local neuro is concerned about his High BP w/ that, but we haven't yet responded to Dr. Boeve's letter. It sounds great if it will work w/ medicated HBP. My Husband sleeps more, but also fights it, making for worsening symptoms.
Thank you so much. Maybe after I read about Namenda to My Husband, he will reconsider.
I do have one question about CoEnzyme Q10 side effects: do I accurately recall being asked myself to discontinue my small amt. I take for health, before surgeries, i.e. Does it cause more bleeding? Just wondering?
Thank you again!
Love Always, WifeLiz


Mon Feb 05, 2007 1:06 pm

Joined: Mon Feb 05, 2007 3:43 am
Posts: 215
Location: Seattle, WA
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Liz:

There are reports in the literature about CoQ10 *decreasing* the anticoagulant effect of warfarin - a 72 year old woman in Denmark, a 68 year old man with a history of stroke and two anti-coagulated 70+ year olds in the US all had a lower INR (measurement of blood's ability to resist clotting) after starting CoQ10 therapy. Thus, CoQ10 is implicated in increasing the ability of the blood to clot in anticoagulated patients. These are all observational studies, not controlled trials. All of these people were taking between 30 and 60 mg/day. None of the controlled trials have ever shown such a change.

People postulate that the structural similarity between Vitamin K and CoQ10 is to blame, but if that were the case, it seems like we'd see dramatic differences in healthy volunteers taking CoQ10, which just hasn't happened. One possibility is that the supplements in question have contained Vitamin E, which can "recharge" spent Vitamin K, which is, loosely, what warfarin behaves like in modifying clotting response.

There is also substantial genetic variation in people's ability to recycle the spent Vitamin K. People who overexpress VKORC1 genes are really super-efficient at recycling the K, so if you combine that with a hefty dose of antioxidants, you might see some swings in INR.

Long-winded way of saying that it's ridiculously unlikely that taking CoQ10 is going to make you bleed more. It's more likely that someone heard something and wildly extrapolated. CoQ10 isn't exactly controversial, but I think a lot of doctors are just not familiar with how important it is - in fact, it's utterly essential for human life and the body makes it's own, so stopping a 30-60 mg supplement is really not going to change blood levels all that much.

Regards,

Eric


Mon Feb 05, 2007 1:37 pm
Profile WWW
Post Thank you again!
Dear Eric,
Thank you so much. I think what I remember is that before surgeries (minor in past few years) nurses calling w/ instructions have just tried to clear my system of the (to many) "unknowns or suspected."

I very much appreciate your scientific explanations! I started a grad program, 10 yrs long, but when my Husband finished LawSchool, I left (w/ very kind offer to get UPENN courses, add to Harvard, get Harvard degree!), but again, for my "unscientific" side, I see now, or at least appreciate, that out of step w/ women of my generation, I wanted our Family ASAP, thus leaving me w/o that coveted degree (and only ability to work in hospital, which I did until becoming ill, and teaching, volunteering. Ironically I was a DE Hospice volunteer, and a Nursing Home volunteer in the Alzheimers section)But I also left us in a position to be early empty nesters, giving us about a year before sx's were hard to ignore. And grown Daughters who do not have to see this in their almost idolized Father. He thanked me often in that one year for pushing for an early Family. Nevertheless, I have urged our Daughters to never be in a situation like mine, to have their career, if only in their back pocket for some years.
We don't worry about $$ yet, but I wish, if only for respite, I had a career, and I wish I had something to keep his mind off work he cannot do.

This veering off course is to ask, do you think the dexedrine might help more than justwakefulness?
My Husband ruminates about work, how much he should make (we really are OK, I think: have been trying several years to get to atty, get POA, as advised by doctors, etc.) If dexedrine, wakefulness, will help his ability to do what he has done for decades, in small amts., that would be lovely. It wasn't clear in Dr. Boeve's letter (also asking my Husband to return for appt.) Which was suggesting ADD or dexedrine was to help increase work, or just address increasing fatigue.

If I am pumping your incredibly informed brain, pls forgive me! I can always ask at next appt. I would of course rather have "retirement" time together, some respite, but if work is his normal (and no one can argue thinking won't help his brain) then I would try to achieve that, if only for harmony.

Also, I get the impression from all the great info a Forum Member kindly sent, that Zyprexa, etc. should *not* be used until end stages.

Thank you again.
Best to you.
Love Always, WifeLiz


Mon Feb 05, 2007 2:58 pm

Joined: Mon Feb 05, 2007 3:43 am
Posts: 215
Location: Seattle, WA
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In *our* experience with dextroamphetamine we have seen substantial increases in alertness, wakefulness and social interactions. It's like we set the clock back a year. I'm sure not everybody has the same experience - this is a potent drug, and even though it's routinely used in pediatrics, it has risks, but for us, having a dad that is happier and more awake is totally worth it.

Friends and other residents at his retirement apartment say he's "the guy they remember" and we see a drastic difference in things like sentence length (longer and more complex), planning for the future (he was talking about summertime entertaining plans (!) in January), he can "figure out" things (ie, his cause/effect processing is better), it's just rather remarkable. We try not to think about the fact that we're giving an old guy a highly addictive form of stimulant - it kinda creeps me out a little bit, but I'm getting over it rapidly - his prescribers see it as valuable, the consulting doctors felt it was reasonable, and having a dollar-a-day speed "habit" is not going to be his downfall.

As for the high blood pressure - yes, it can affect pulse and BP. The beauty of BP is that it's easily monitored - we're watching, and if he has higher average BPs or a higher pulse (a real problem with his atrial fibrillation), we'll adjust his BP drugs accordingly, since he's on the very, very low end of their dose range. Ask your husband's cardiologist or internist (whoever manages his hypertension) what an appropriate BP/pulse target would be, and work with them to adjust as needed.

Finally, I know Zyprexa has some bad press here - I think it's because it seems to be more likely to cause motor problems than Seroquel. Our neuro has suggested a change to seroquel and the psychiatrist is onboard with that, but the improvement in his motor functioning of late is so dramatic (he can walk safely without his cane) that we have made it the lowest priority of all the drug changes that might be made. We use a tiny (5 mg/day) amount and get dramatic results. Your mileage will, of course, vary. We like that Zyprexa acts fast (if he's missed a dose, we can slip him a Mickey in an Ensure and he's good again in a half-hour), and that, in emergencies, it's available by injection. As an atypical, it's safer than Haldol IM and we are totally comfortable using it.

Eric


Mon Feb 05, 2007 4:06 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Thank you again!
WifeLiz: "It wasn't clear in Dr. Boeve's letter (also asking my Husband to return for appt.) Which was suggesting ADD or dexedrine was to help increase work, or just address increasing fatigue."

Liz -
Did Boeve's letter suggest consideration of dexedrine or did he say the drug name in the last appt and you are thinking he might've said dexedrine? It is used in ADD - Attention Deficit Disorder (in adults).
Robin


Wed Feb 07, 2007 3:42 pm
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