6'-sialyllactose : A Potential Therapy?
A recent clinical study performed at the Pusan National University, Republic of Korea has shown that 6’-sialyllactose (6SL) could have a potential therapeutic effect for GNE Myopathy patients. The GNE gene is involved in sialic acid synthesis, and mutations in this gene result in a decline in sialic acid levels in skeletal muscles. 6SL is abundant in human milk and is a source of sialic acid for the infant. Supplementing with 6SL could help to restore sialic acid levels in GNE Myopathy patients. In animal studies 6SL has been shown to be non-toxic. It is a component of human milk oligosaccharides, which are widely used as dietary supplement. Hence the above study was undertaken to determine the pharmacokinetic properties of 6SL and test its efficacy in patients with GNE Myopathy.
Details of this study can be seen at Park et al. Pharmacokinetics and clinical efficacy of 6’-sialyllactose in patients with GNE Myopathy: Randomized pilot trial; Biomedicine & Pharmacotherapy 168 (2023) 115689
Some of the important findings of this study are summarized below:
Dose: 6 g of 6SL was found to be efficacious (2 g taken three times a day). Patients were tested for 96 weeks.
Safety profile: To assess the safety profile of 6SL, complete blood cell counts and blood chemistry were performed at 24, 48, and 96 weeks after administering 6SL. No symptoms of elevated liver enzymes were seen. The drug was well tolerated. Most of the adverse events reported during the first six weeks were gastrointestinal complaints like diarrhea, and/ or constipation. Intermittent headaches were also reported by some participants. These were resolved within 6 weeks.
Muscle assessment: Motor function tended to increase over 96 weeks in terms of shoulder abduction, elbow flexion, hip flexion, and knee extension. Knee extension improved most consistently. Hand grip strength decreased , while ankle dorsiflexion power did not show a clear increase or decrease. No significant change was observed in 6 minute walk test. In muscle MRI the fat fraction showed no increase in the study period (2 years) except for anterior thigh. This shows that muscle degeneration was slowed down.
Functional improvement in activities of daily living: GNEM-FAS score was used for this assessment. It did not improve significantly by the end of the study. It is possible that functional improvements may take longer to register.
Summary: This study suggests that 6SL is a potentially important therapeutic option for GNE Myopathy. It is safe, well tolerated by oral administration, increases plasma sialic acid, improves proximal muscle power, and prevents muscle degeneration.
FAQs About Procurement & Use of 6SL
Q1. Where to order from and is it delivered all over India?
A. It is being marketed by Casupplements. Their web address is They have delivered to many of us in India in various cities. Please visit their site to confirm if they deliver to your city.
Q2. Price, including shipping?
A. 231.02 US dollars, including shipping. This is without promo code, which is probably not applicable now.
Q3. How many days it takes to deliver, and tracking procedure?
A. Delivery takes around 15-21 days. Shipment can be tracked using the tracking ID which they send after you place the order.
Q4. Customs duty - charged or not?
A. It is variable. Some of us have got it without paying any duty, while others had to pay some duty.
Q5. Dosage?
A. 3 gms twice a day, or 2 gms thrice a day; total of 6 gm daily. There are two spoons in the packet. Smaller spoon is of 2 gm and bigger is of 3 gm.
Q6. How to consume it?
It can be dissolved in normal water and consumed. Quantity of water is not important. Just take the 6SL measured by spoon in a cup. Dissolve in water and drink it. It can also be had in milk or other liquids. It can be taken at meal time. Did not find any specification about when to take it.
Q7. Any side effects?
A. The study by Korean group found some digestion issues with some participants, mainly diarrhea and/ or constipation, and intermittent headache was reported by some participants. But none of these was severe, and it generally improved after 6 weeks of taking the 6SL.
Q8. Any tests required to be done prior to taking 6SL?
None have been suggested. In the study they monitored the blood cell counts and blood chemistry after 24, 48, and 96 weeks of taking the 6SL. No abnormal findings were seen. Liver function was not affected. They state that the drug is safe. For one’s satisfaction you can monitor routine blood profile that includes CBC, LFT, RFT and Electrolytes.
Q9. How long it is to be taken?
The study has been done for 96 weeks (2 years). There was no adverse effect. Since our disease is progressive, we can continue taking 6SL for as long as possible.
Q10. How will we know if there is any kind of improvement?
In the study they found improvement in shoulder abduction, elbow flexion, hip flexion, and knee extension. Hand grip strength, ankle dorsiflexion power, and 6 minute walk test showed no improvement. In muscle MRI they found that fat accumulation had not increased, which means that muscle degeneration has slowed, and muscle replacement by fat is slowing down. Thus, we may expect to see some improvement in a year or two of taking the drug. It cannot reduce the damage which has already taken place, but it may help to slow down further damage. It may also improve some of our functions with time.
VERY IMPORTANT: Please continue with regular exercise and nutritious diet, along with 6SL. It is not a cure.