What is the Preferable Dosing of Low Dose Naltrexone (LDN) for Ehlers-Danlos? 

LDN Specialist
Pharmacist Michelle Moser and Dr. Sam Lebsock

Do you see once or twice-a-day dosing as more beneficial in general for people with Ehlers-Danlos Syndrome?

It really depends on the individual.  With EDS or Ehlers Danlos Syndrome there can be more going on than just muscle spasms and chronic pain. There are cardiac issues, changes in blood pressure, skin issues, etc.  I'm sorry that we're kind of  beating a dead horse here, but it's really all about the individual. 

There's no wrong way to do LDN. There are a lot of right ways to do LDN, but it really depends on what's working best for that patient. Usually, we start with once-a-day dosing and we slowly increase that dose until we get to a point where the patient tells us that the symptoms are doing well and they need a little bit more control. Then we'll add a little tiny dose at the opposite end of the day, or we'll cut the first time interval down.

It  depends on that individual and a lot of compounding pharmacists work very well with prescribers in allowing the patient to talk to the pharmacist where the pharmacists have the flexibility to help fluctuate that dose and make those changes. Whether it's a protocol that's been agreed upon or a dosing interval that's been agreed upon so we don't exceed a certain number of milligrams per day, because we have close relationships with the providers. They know us, we know them, we know what they like to treat. We get to know our patients really well, too. That's where we're able to make very, very important changes but also life-changing judgment calls for those for those patients and then we always communicate it back to the provider.  They're never kept in the dark about anything. It really depends on the person that's standing in front of us.