New info from the Oct 9th Foundation Summit?

[stockton2malone2]

Was there any new information on potential treatments in near future or interesting information not available elsewhere on the forum or in the research?

Unfortunately I was not able to attend and I'm sure many other forum members are in the same boat, so for any of you who did go it would be much appreciated if you had any wisdom to share from the summit. Thank you for your assistance!

[Rustsmith]

There was some discussion of the potential for a dopamine agonist that would preferentially interact with D1 receptors instead of the current meds, which interact with the D2 and D3 receptors. The theory, which has been tested on maybe 12 people, is that stimulating the D1 receptors will help counteract augmentation. Lots more work needs to be done, but the idea has been patented.

Something that wasn't discussed, but is ongoing in Europe is work on dipyridamole. They have now been through a small double blind study and it still looks like it could potentially become a completely different type of RLS treatment. And a positive on this one is that it is already approved for use in the US to treat blood clotting in some heart conditions, so it could easily be used off-label just as the opioids are now.

[stockton2malone2]

Thank you!

[Oozz]

Dr. Earley said RLS completely goes into remission for about 10% of his patients. Some of these patients have been on RLS meds for 20+ years. None of the other doctors reported similar findings; however, Dr. Earley is the only one who reassesses baseline symptoms by advising patients so a 14 day wash out between medication changes.

This should give you some hope.

[stockton2malone2]

Thank you! That got me curious and I was able to find this study on the topic:
https://www.sciencedirect.com/science/a ... 4315300565

[Rustsmith]

I did non-medical, scientific research for most of my career, so I often look very carefully at both the results and the study design of publications such as the one that stockton found.

I have a couple of comments about their work. First, although they followed most of the patients for up to 8 yrs, all of the remission that they reported occurred within 3 yrs of diagnosis and within 1 yr for the mild cases. They did not offer any explanation for why remission was more likely for mild cases (seems logical though) or why the mild remissions all were within 1 yr where the severe case remissions could occur up to 3 yrs afterwards.

Second, they did not try to explain why remissions were occurring. Was it that the treatment used was so efficient? Did they improve their iron status following initial diagnosis? It seems obvious that this would be of interest, but wasn't mentioned.

The later followups were often done by phone. How much of the remission was simply study burn-out where you tell the researcher anything to get off the hook for having to answer more questions?

I have other concerns, but those give an idea of the potential limitations of this study.