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.