And now for the good news

[Parminter]

From the research section of the RLS Foundation. The lovely Doctor Ondo is working for us.

'The RLS Foundation has awarded a $37,000 grant to Dr William G. Ondo of Houston Methodist Neurological Institute to study a new medicine to treat RLS patients who have augmentation.

"Augmentation is a condition where RLS symptoms start to worsen after initially improving, while on dopamine agonist treatments such as pramipexole, ropinirole, Neupro, and levodopa. Since most patients with an urge to move initially respond to properly dosed dopaminergic medicines, augmentation is arguably the biggest practical impediment to successful chronic management of RLS" explains Ondo. "The exact mechanism of augmentation is not known, however, based on animal studies we performed, we hypothesize that it is caused by increased activity of dopamine type I (D1) receptors. In animal models these receptors in the spinal cord increased when mice models of RLS were chronically treated with typical dopamine drugs, specifically pramipexole. Dopamine type I receptors have many features which are the exact opposite of dopamine type 2 (D2) and 3 (D3) receptors in the spinal cord. The dopamine medicines still stimulate these D1 and the D2/D3 receptors, which we feel results in the contradictory effect that they both improve and worsen RLS at the same time."

"We have identified an investigational drug which blocks D1 receptors without blocking D2 and D3 receptors, ecopipam. In this small trial, we will administer this drug in a blinded manner to patients already on dopamine medications who have augmentation, to see if it can reverse the augmentation and improve their symptoms."

Pramipexole would appear to be the biggest monster.

[nightdancer]

It is a start. 37,000 bucks is not going to get you much of a study. I am familiar with this one. Much more work needs to be done. We need a bigger donation than what the Foundation can give us. Unless a drug company gets involved and thinks they can make $$$$ on this for the purpose of treating augmentation in RLS with dopamine meds.

[LotteM]

It is enough to support one (1) PhD student, with the usual duration of 3 years. That would make indeed a good start. Time will tell if the results will support or disprove the hypothesis.

[involuntarydancer]

Is there no money in ecopipem then? I wonder who manufactures it. Judging by the numbers of people who come on this forum augmented on a d/a, would there not be a reasonable market for ecopipem for many of those people who wanted to stay on the d/a? Or maybe people are moving away from d/a drugs anyway on account of the thinning of the hypocampus that madlegs posted about. But in that case is there any point in a study of a drug that reverses augmentation?

[Parminter in reply to involuntarydancer]

Dancer and Lotte.

I suppose, if a pharma became involved in a big way, it would mean that the Big Bad News about augmentation and DAWS would have to spill out of the woodwork. There would be havoc.

There would not be 350 cases pending, there would be thousands upon thousands.

But the truth will out at some time. I look forward to it.

And yes, the funding is minimal, but the idea and the possibility are there.

[Parminter in reply to involuntarydancer]

Dancer,

I keep an eye on three or four forums /fora on Restless Legs.

Conservatively, of those who are doctor-medicated, 50% are on DAs, and most do not know if or why they are in trouble. They are waltzing blindly into a storm, very happy with magic pills.

If that is as little as 0.5% of the world-wide Caucasian population, who seem to have most of the Wed, and 0.1% of the rest of the world (although Turkey seems to be quite high in sufferers) that is a huge number of people.

India seems to have quite a number of sufferers, so it might be primarily an Indo-Caucasian set of genes.

Yes, I think there would be money in it.

MIne, for a start.

[involuntarydancer]

Yes that would accord with my own observations. For that reason I am slightly surprised that there is no interest in funding the research by a larger pharmaceutical company.

[Parminter]

Ha!

What about the makers of Pexola?

Perhaps I should broach the subject with my brother, who was the marketing director for Southern Africa and constantly in touch with the parent company. (I think it remains a family business, not listed on the stock exchange, so therefore no pressures from shareholders).

Now that would be interesting.

I am going to visit him today, for his 75th birthday party. A long drive to the sea.

Do I dare? He really, really believes in his drugs and his company, and is happy to swallow statins and calcium-channel blockers ad lib, both of which do me grievous harm, (and probably harm him too).

Hmmm........

At the least, I can get the name and contact details of the medical director.

[Lash65]

Off topic, but mentioning the spine made me wonder about something - How many of you have lower back trouble? I wonder if that might influence RLS?

[Leelee49 in reply to Lash65]

I’ve often thought that, I know I have.

[Cacky in reply to Lash65]

I have thought of this also. I started having stiff lower back problems a few months ago, right about the same time that the RLS got worse. I have thought about visiting a chiropractor and/ or medical orthopedic doctor.

[Parminter in reply to Lash65]

I have read that it certainly can, but for the moment cannot remember the source. I will post it if I find it.

[Lash65 in reply to Parminter]

Thank you. Thanks everyone for your replies.