Coenzyme Q10?

[curlygirl]

Like all people on this forum I've done a lot of research recently. I want to point out that I am in no way a medical professional and am not making a recommendation to take this supplement. In fact, I am NOT giving it to my son (AA), but I may take it to see how I feel on it. But through a lot of reading I wanted to put this on this forum because I've read about the supplement being recommended for other autoimmune and mitochondrial diseases.

Through my reading I see that Aplastic Anemia is sometimes called a mitochondrial disease, which I don't see often. My guess is that this is suspected but not proven. I did find this article from a 2008 Korean study investigating the issue on the NIH site:

"Mitochondrial DNA Aberrations of Bone Marrow Cells from Patients with Aplastic Anemia," http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2610644/.

I then read two other items, a) an article published by the NIH Center for Molecular Medicine, and b) an abstract on the NIH site from the Baylor College of Medicine, linking Telomeres and Mitochondrial Function, one by a pathway of the p53 receptor and the other to reducing TIN2 expression:

a) "Telomeres and Mitochondrial Function, Correspondence to Toren Finkel, MD, PhD, Center for Molecular Medicine, NIH, Bldg 10/CRC 5-3330, Bethesda, MD 20892. E-mail finkelt@nih.gov, Telomere Dysfunction Induces Metabolic and Mitochondrial Compromise, Sahin et al, Nature. 2011;470:359–365. http://circres.ahajournals.org/content/108/8/903.full

b) "Mitochondrial localization of telomeric protein TIN2 links telomere regulation to metabolic control." http://www.ncbi.nlm.nih.gov/pubmed/22885005

My layman's guess is that it may turn out that Aplastic Anemia could in fact be a mitochondiral diesase that is brought about by an autoimmune mechanism caused by mitochondria. Conversely, it could just be that Aplastic Anemia messes with the mitochondria of red blood cells and the issue goes away when Aplastic Anemia is put into remission by ATG and Cyclosporine.

Based on this I then read the article "A Modern Approach to the Treatment of Mitochondrial Disease." http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3561461/. In it it mentions many of the pathways of mitochondrial disease and the supplements used to try to keep the diseases in remission, one of which was Coenzyme Q10. It caught my eye because it is used to treat nephropathy. My nephew had IGA nephropathy which I thought was also an autoimmune disease so I found it interesting that it came up in an article regarding mitochondrial disorders. When searching on Coenzyme Q10, I then also found two abstracts on the NIH site related to the use of Cyclosporine A and Coenzyme Q10 together:

"Effect of reduced form of coenzyme Q10 on cyclosporine nephrotoxicity." Department of Urology, Tokyo Teishin Hospital, Chiyoda-ku, Tokyo, Japan. http://www.ncbi.nlm.nih.gov/pubmed/23194328

"Preparation, characterization and in silico modeling of biodegradable nanoparticles containing cyclosporine A and coenzyme Q10." Strathclyde Institute of Pharmacy and Biomedical Sciences, University of Strathclyde, Glasgow, UK. http://www.ncbi.nlm.nih.gov/pubmed/20061595

Based on the results of the Tokyo study it looks as if taking Coenzyme Q10 statistically significantly protects against kidney damage while on Cyclosporine A, and University of Strathclyde tried to develop a single way to administer the two together.

I asked one of our Pediatric Hematologists if she had heard of Coenzyme Q10, and she had. She said that it was interesting in that she'd heard of it being recommended for Rheumatoid Arthritis, another autoimmune disease, but one that seems to be brought about by abnormalities of B cells rather than T cells. She also said that she's had patients take it on the side but has not recommended it. She specifically said that she wouldn't recommend it for my son because he's on a lot of medicines and there is no way to tell how it would react with any of them, and also because he's only recently gotten good with taking pills, and still sometimes chokes on them, so why have him take more. As I mentioned at the beginning I actually do not feel comfortable putting him on something myself, so I'm not. But I wanted to put this information out there in case someone else wants to discuss it with their hematologist.

Thanks and take care.

[Marlene]

Thanks for posting this. John uses CoQ10 ever since his discharge from Hopkins. We decided to start this on our own to address elevated blood pressure. Worked like a charm for him. He continues to use to this day. John ended up with mitochondrial damage from the all the meds, iron overload and lack of nutrition during treatment. We've used supplements to address many of the issues related to that. In addition, bio-identical testosterone replacement has been helpful.

We found most doctors do not have the knowledge to recommend supplements and therefore, won't. We chose not to let that stop us from putting in place a more natural approach to restoring his health.

[curlygirl]

Marlene, Thank you for the input! I'm glad it worked well for your husband! I actually bought some today and I am going to try it for a while and see how I feel on it. I've been a horrible sleeper since hitting puberty (so for over 2 decades now) and rarely have energy. I also used to exercise a lot but haven't since my son got sick. No sleep supplement has every helped but maybe CoQ 10 will help me with my energy. If it does I can reassess whether it may help my son or not.

[Lulu]

Very interesting. I agree with Marlene that most (if not all) orthodox doctors do not have much knowledge of supplements and will just say they are not advisable because they do not know. My haematologist told me I was clutching at straws going down the nutritional path, but I genuinely believe that one day most of these bone marrow disorders (barring those directly caused by chemical damage) will be recognised as nutrient deficiencies/imbalances. I certainly don't have all the answers and am not 100% recovered, but do believe I would possibly be dead by now had I taken their advice.

I don't know much about mitochondrial disorders but there is a very interesting talk by a Dr Terry Wahls here http://www.youtube.com/watch?v=KLjgBLwH3Wc who has recovered from terminal MS through a diet which she devised to address mitochondrial function.

[Marlene]

I've seen her video. A very remarkable recovery. She was in a wheel chair when she started addressing her MS with diet and nutrition.

Curlygirl....sleep is critical. You may want to look into the B vitamins. They help for both sleep and energy. Also, a very safe supplement is l-theanine. It's an amino acid that is found in green tea and can help with sleep. My doctor recommends its. You can take quite a bit of it. It helps with stress also. I usually take 200mg but will take up to 400mg just before seeing the dentist .

[Sally C]

From what I understand CoQ10 is crucial for many functions of the body. One in particular is the heart - especially for those on statins. I read where statins "suck the CoQ10" out of the heart.
Curlygirl, I hope it helps with your sleep. Not to be pessimistic but I take CoQ10 because I take Lipitor and I have a terrible time sleeping. I'll be interested to see if it helps you. I will say though, I still have tons of energy - sometimes too much. In spite of not getting much sleep I walk 3 miles almost every day - at age 63 .
God Bless,
Sally

[Marlene]

As we age, our level of coQ10 decreases. My doc suggests supplementing coQ10 even if you're not on an statin. Helps the heart.

[curlygirl]

Thank you, Lulu and Sally C! Lulu, my son is a picky eater but we've been really working on convincing him to eat more. He still won't eat most fruits, vegetables, and meats (he eats a lot of carbs and tomato sauce) but we got him to eat Salmon and pineapple, on top of the apples & peas he would already eat. He's a smart boy so I feel like I should have him listen to the video with me to try to get him to eat a better variety of food.

Sally, my sleep was horrible last night. I usually is, though, so I can't blame it on the CoQ10. One article I read said to take it at night to increase absorption, but I think I will try it in the morning instead, because that's when I need my energy!

[Marlene]

Have you tried magnesium before bedtime. Or a warm epsom salt bath before bed?

Magnesium citrate is a good choice.

[curlygirl]

Marlene, thanks for the input! I haven't tried Magnesium, I can start trying that, too! Over the years I've tried various preparations of Melatonin, sleepy time teas, St. John's Wort, Evening Primrose Oil, Milk Thistle. None of these have helped me sleep, although the Evening Primrose Oil had a good effect on my skin.

[Marlene]

If you decide to try B vitamins for sleep, you'll have to play with timing. They can either give you energy or help you sleep. Specifically B12...some find it's too energizing to take at before bed.