RLS and New Drug Development

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
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Oozz
Posts: 217
Joined: Wed Oct 11, 2017 8:09 pm

RLS and New Drug Development

Post by Oozz »

Hello -

It seems like there has been a lot of research over the past few years regarding RLS and potential pathways that new drugs could target. However, it doesn’t seem like there is anything in the pipeline.

Does anyone know what the biggest constraints are right now for developing new drugs for RLS? Is it money? Unsuitable new compounds? Lack of manpower? Limited understanding of the disease?

Rustsmith
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Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: RLS and New Drug Development

Post by Rustsmith »

There is one possible new drug that is nearing the end stage for the initial research. It is a dopamine agonist that works more on the D1 receptors than the D3's, which are the ones that our normal DAs are attracted to. The thought is that this new D1 drug may help alleviate augmentation. Second phase clinical trials have been completed, a patent granted and a paper describing the results is being prepared for publication. I don't know if the next step is to try combining it with a D3 drug to get one that is less likely to produce augmentation or to create a drug that actually treats augmentation with the idea of possibly reversing it, or both.

As for other research, most of what has been going on has been with animal models because Covid has made running clinical trials on humans virtually impossible. A large stage clinical trial was planned in Europe that was to start in early 2020 that would evaluate the adenosine treatment approach. That trial is on hold until Covid is brought under control. The primary research center for that trial is in Spain, which has been particularly hard hit.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

stjohnh
Posts: 1284
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: RLS and New Drug Development

Post by stjohnh »

Well, just because we have not heard of new drug development doesn't mean it is not happening. With the prevalence of RLS being fairly high, the number of potential patients a new drug would help is large. I suspect several pharmaceutical companies are working on new drugs.

I think the biggest current impediment is that dopamine agonists actually work pretty well for a large number of RLS patients. Those are not the ones that post on this forum. Our members are mostly people with severe RLS or augmentation or other problems with dopamine agonists.
Blessings,
Holland

Rustsmith
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Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: RLS and New Drug Development

Post by Rustsmith »

Another potential financial roadblock for the pharmaceutical companies is the fact that opioids work pretty well for those of us with severe or very severe RLS and the opioids are all generic and very inexpensive. Another complication for those of us with the more severe form of the disease is the desire during clinical trials to use "drug naive" patients so that they can be compared to a cohort who do not have RLS or whose RLS is "treated" with a placebo. Trying to run a double blind study of patients with IRLSSG scores of 25+ where half get a placebo would make it pretty obvious after just a day or two of who got the placebo. The only other approach would be to study a drug that would be added to an existing treatment for half and the other half use their existing med plus a placebo, but that makes evaluating the results rather complicated and messy.

That leaves new drug development work for the huge number of potential patients (around 10% of the US population) with mild to moderate RLS.

It would be fantastic if something was developed for the mild to moderate crowd because that would trigger education for all the GPs and neurologists who still are pretty much in the dark when it comes to treating RLS.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Oozz
Posts: 217
Joined: Wed Oct 11, 2017 8:09 pm

Re: RLS and New Drug Development

Post by Oozz »

Thank you both for the quick responses.

@rustsmith @stjohn - how do you stay on top of this information? If one wanted to look deeper into this topic, would you have any recommendations on where to start?

Rustsmith
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Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Re: RLS and New Drug Development

Post by Rustsmith »

I regularly do searches and read RLS publications that I find using Google Scholar. GS is not the same as doing searches with normal Google. About half of the papers that are referenced are only available as abstracts through GS and the other half allow full access. I am also fortunate to have electronic access to most medical journals through the university library at the school where I help teach engineering (as an unpaid volunteer, so library access is my "payment" for sharing my professional experience). My role with guiding research at the university also provides me access to a "social media" platform for researchers, which isn't open to the general public. This allows me to follow and get warnings of new publications of researchers such as Dr Allen at Hopkins, Dr Ondo at Houston Methodist and Dr Rye at Emory.

But as with most professional fields, you need to learn a lot of the medical jargon to understand many of the papers. Regular Google is very useful for getting an easily understood definition for the terms that you don't already know.

Finally, I regularly check the Clinical Trials database at ClinicalTrials.gov to get an idea of what is being done at research centers both in the US and in Europe. Many of these studies are pretty useless as far as new information (who needs to see about yet another study of the efficacy of Horizant in yet another ethnic group?), but occasionally I find something new like the study that Dr Ondo did about a year ago into the D1 med for possibly treating or preventing augmentation.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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