Carnitor Questions

[starfish]

Hi. I really appreciated everyone’s advice re: Carnitine. First I tried Acetyl-L-Carnitine 1500mg 3 times per day and now regular L-Carnitine 500 mg 3 times per day 45 minutes prior to food. Unfortunately, so far they haven’t helped my muscle pain. It’s also been hard for me to increase the regular L-Carnitine without getting diarrhea.

After seeing Carnitor mentioned on this site, I asked my Dr. if I could try it. He gave me prescription Carnitor Tablets (Sigma Tau Pharmaceuticals) - 330 mg tabs twice a day with food. The dose seems small, but maybe Carnitor is more powerful than the other Carnitines I’ve tried.

I’m also concerned about the following side effects listed on the Carnitor pharmacy packaging sheet.
“May cause serious side effects (e.g. seizures) or interference with dialysis (increased nitrogen wastes). Tolerance should be monitored very closely during the first week of administration, and after any dosage increase. Monitoring should include periodic blood chemistries, vital signs, and plasma Carnitine concentrations.” Other side effects were “diarrhea or muscle weakness”.
My Dr. never said anything about side effects or monitoring me. Has anyone experienced this?

I don’t know what do. Is this the same brand of Carnitor tablets that others have used successfully? I think I read somewhere on this board about a powdered form of Carnitine or Carnitor also. Any suggestions? Thanks!

[Darrell]

The information at [http://www.mayoclinic.com/health/drug-information/DR202325] says:
"Make sure you tell your doctor if you have any other medical problems, especially:
* Seizures—occur more often and are more severe in patients with a history of seizure activity
* Severe renal dysfunction—administration of high doses of oral levocarnitine for long periods of time may build up in the body of patients with severe kidney disease"

It says seizures are a rare side effect.

1500 mg three times a day was a whopping dose. That's 4500 mg per day. I usually take 2500 mg per day and sometimes 3000 per day. I get full effect from 500 mg, but the effect only lasts about three and a half hours.

I have never taken Carnitor (the prescription approach). The supplements have all worked for me. I've taken four different brands including both L-Carnitine and Acetyl L-Carnitine HCl and including both tablets and powder-filled capsules. All have worked for me.

I'm sorry to say that if 4500 mg per day didn't work for you, then I will be quite surprised if 660 mg of Carnitor per day has any effect. I suspect your statin muscle damage is just not the same type as mine.

[starfish]

Thanks, Darrell. You are right that 4500 mg daily of Acetyl L-Carnitine seems like a lot. I started out taking much smaller doses. Then I thought I read somewhere that Ray was taking 6000mg of L-Carnitine per day to help him. I gradually increased my doses, thinking that maybe I just needed more to relieve my pain. When the Acetyl type didn’t help, then I tried the L-Carnitine. I’m still encouraged that you, Ray, and others have found some relief. Maybe I would be worse if I wasn’t taking it at all.

I haven’t taken the Carnitor yet. The warning on the package insert scared me when said it may cause seizures in even in people who have not had a history of previous seizure activity.

[Ray Holder]

Hi,
I need a large dose of carnitine because I also have a deficiency of it from Post Polio, but are you taking Q10 as well, that is needed to help with bodily production of carnitine, and to cope with other problems which the damage done to its supply by the statin has brought about.

I would try to find a carnitine level above which you get no added improvement, I once read that excessive carnitine or Q10 only result in expensive urine !! At the very least, cut it back to just below bowel problem levels

Carnitor is only a trade name for L Carnitine, I believe that the warning about seizures is there because people who take Valproate for epilepsy become carnitine deficient, and supplementation may cancel out the beneficial effect of the valproate. I have to admit that the tablet form available here in UK did nothing for me, it seems to take too long to dissolve and has gone past the point at which it is absorbed before it can do so. Capsules seem to work OK, but I use a powder form, as they are only in 250mg size here, and my 6grams daily would equal 24 capsules!!

It is fairly important to take a good proportion of your daily dose first thing in the morning, I have seen it recommended to be at least 2 1/2 hours after food, and 45 minutes before food, which is a bit of a problem during the day. I take mine at about 7 am and a smaller dose about 11.30 am, it seems to keep me awake at night if I leave it later in the day.

Ray

[Ray Holder]

PS I presume you have stopped your statin.

Ray

[starfish]

Hi Ray,
Thanks for making us aware of Carnitine Deficiency and how supplementation can help. I've also taken 2000 mg of CoQ10 for months (800mg at breakfast, 600 mg at lunch, and 600 mg at supper). I can't tell if it helps, but I might be worse if I wasn't taking it.

I only took Crestor for 3 weeks and then stopped, but I sustained muscle and nerve damage. At age 49, I haven’t been able to work in 11 months. Prior to Crestor I was very active.

Following your recommendation to others, I do take my Carnitines 45 minutes prior to food. It’s been hard for me to increase the L-Carnitine because of diarrhea. I would like to take a large dose of L-Carnitine in the morning like you do, but I don’t think my bowels could tolerate it right now.

Currently, I’m trying to increase my Total Daily Carnitine intake by taking both Acetyl L-Carnitine 1500 mg and L-Carnitine 500 mg together three times daily. I guess that would give me a total of 6000 mg daily also.

I wonder if I am like you with respect to the L-Carnitine being more effective than the Acetyl type. For some reason, even high doses of Acetyl L-Carnitine never gave me diarrhea; however, the L-Carnitine has given me bowel trouble even starting low at 250 mg four times daily. If I can eventually tolerate higher doses of the L-Carnitine, then I’ll also reduce the Acetyl correspondingly. I hope this idea will work.

Thanks again for your advice.

[sos_group_owner]

Hi Starfish,

Re: CoQ10
CoQ10 should be in gel form in a capsule (not powdered in capsule) and
should be taken with vitamin E, oil &/or the fattiest meal of the day.
Vitamin E - d-Alpha (natural), not dl-Alpha (synthetic).
An even better source of vitamin E is one that contains both tocopherol and
tocotrienols and from all eight sources: alpha, beta, gamma, delta.
Good article that discusses "vitamin E":
[http://www.vitamine-factor.com/family.htm]

Fran

[starfish]

Hi Fran,
Thanks for your info about CoQ10 and Vitamin E. Several months ago I read your recommendations to others regarding those supplements and have been taking them as you advised.

Thanks also for the Vitamin E website link. I really appreciate your knowledge and advice to myself and others on this site.

Good luck to you and your husband. I hope he continues to improve.

[sos_group_owner]

Thank you Starfish... Fran