Could it be helpful for FSHD?
BY AMANDA HILL, HIGHLANDS RANCH, COLORADO
In the current absence of a treatment for FSHD, many patients experiment with a variety of lifestyle or diet changes, supplements, naturopathic medicine, or other types of treatments to help alleviate and cope with disease symptoms. In recent years, several laboratory studies have shed light on one such supplement that may have a variety of positive effects across multiple types of muscular dystrophies: nicotinamide adenine dinucleotide (NAD+) or one of its precursors, nicotinamide riboside (NR) or nicotinamide mononucleotide (NMN).
You may have seen NAD+ supplements touted as anti-aging molecules in mainstream media channels, and there is a significant body of science supporting this idea. NAD+ plays an important role in the generation of mitochondria, the cellular machinery responsible for producing your body’s energy supply from the nutrients you eat.
Numerous laboratory studies have shown that NAD+ has beneficial effects on a diverse range of physiological processes, including energy production, inflammation, oxidative stress, insulin resistance and weight gain, memory and cognition in Alzheimer’s disease, cardiac function, and more. Interestingly, it is fairly well established that NAD+ levels decline with age.
In the case of muscular dystrophies in general, one study looked at gene expression patterns across multiple mouse models of different types of muscular dystrophies, including FSHD. The researchers found that as expression of genes involved in the pathogenesis of disease went up, expression of genes involved in the generation of mitochondria and NAD+ synthesis went down. Although we must be careful to understand that correlation does not show causation, this is an interesting result to explore further.
The same group then went on to evaluate the therapeutic impact of supplementation with NR in a mouse model of Duchenne muscular dystrophy (DMD). They found that NR supplementation improved mitochondrial energy dynamics, improved running capacity, protected animals from and reversed muscle damage, and decreased muscle inflammation. These results were obtained in a mouse model of DMD, but all of these effects would theoretically also be beneficial in FSHD.
Although more studies are needed to better understand the effects of NAD+ supplementation in muscular dystrophies generally, and in FSHD specifically, the early evidence shows some therapeutic potential. NAD+ supplementation would not cure FSHD, but there is a scientific rationale for thinking it may improve some symptoms, such as muscle damage, muscle pain, and fatigue.
NAD+, NR, and NMN supplements are all available for purchase over the counter and without a prescription. Although laboratory studies sound promising, it’s important to emphasize that there is no clinical data yet that these supplements provide patients with any benefits.
Salvatore Sofia says
I want to thank you for posting this important information. As a patient of FSHD and a Chapter Director this type of information is extremely important to all of us!! I think it’s important that we never lose sight of us patients that are dealing with alllll the variety of symptoms…daily. To have even the slightest hope in even a supplement helping us is of vital importance. Just because something hasn’t received enough study. Or doesn’t qualify doesn’t mean it wont be beneficial to some of us!!
I’m sure that there ever could be a long enough study on alllllll of us individually…we would certainly prove this!!
Again, Thank You!!!!
Sal Sofia
Chapter Director
FSHD Society
CentralCoastFLChapter@fshdsociety.org
Matt Barrett says
Thank you for writing this. As a person with a science background and a skeptical mind I appreciate the way this was written. You just plainly laid out the facts, and didn’t go overboard trying to tout this as something we all should do. I wish more things were written this way.
Catherine Lheureux says
I know it’s anecdotal since I am not part of a study, but I have been supplementing with NAD+ for quite some time now on and off, and it has given me energy. I really feel the difference when I don’t take it. I will be turning 60 years old at the end of the year, and I am still able to walk 4 to 6 miles without struggling. I am also continuing to teach (my profession) because I experience less fatigue. It’s been of great benefit to me.
Jas says
Hello Catherine
I am trying to decide which nad+ product and how much to take Would you be willing to share what has been helpful for you? There are so many products out there…..and word of mouth from someone with the same fshd would be most appreciated.
Thank you in advance.
Jas
Jim Wellman says
I’m going to give it a try as it doesn’t sound like there’s a downside. I certainly understand what Sal said about “variety of symptoms”. There doesn’t appear to be an “average” or “usual” set of symptoms for FSHD but we’re all in the same, large, ballpark. I hope someone does some scientific studies to develop findings for we in the “human” models! 🙂
I would like to hear from anyone who uses it to know it they see a difference in their symptoms, and also the dosage being taken.