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Restless Legs Syndrome

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Calcitonin Gene Related Peptide

Joolsg profile image
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pubmed.ncbi.nlm.nih.gov/398...

thejournalofheadacheandpain...

Two recent articles on the link between RLS and calcitonin Gene related peptide.One of the articles treated this with monoclonal antibodies with good effect.

This may be an interesting possibility for refractory RLS where none of the other medications are suitable or the side effects are intolerable.

This is why more research is essential in the RLS field.

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Joolsg profile image
Joolsg
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Kakally profile image
Kakally

Absolutely! 👍🤞🤞

Joolsg profile image
Joolsg

This is one of the Monoclonal antibodies used. It's an injection that can be self administered.Now we need a research team trial it for RLS.

bnf.nice.org.uk/drugs/frema...

Emgality is another MAB used.

WideBody profile image
WideBody in reply toJoolsg

I can't get this study. It is only for people in the UK. I may use a proxy. Any chance you can send me a copy? DM if you can. Thanks.

Joolsg profile image
Joolsg in reply toWideBody

The BNF link just lists the drug & explains what it is/does.Here's a screenshot of the page.

Text
WideBody profile image
WideBody in reply toJoolsg

Thank you. This is really interesting. "Fremanezumab’s CGRP neutralization may indirectly restore adenosine signaling, reducing glutamate hypersensitivity".

You know I am a fan of the Adenosine Hypothesis of RLS. This is why I take Dipyridamole. Fremanezumab from what I can tell is taken monthly or even quarterly? I don't know enough yet.

pmc.ncbi.nlm.nih.gov/articl...

THIS is REALLY good news. Just wow! Thanks again!!!

WideBody profile image
WideBody

Nice, thanks Joolsg, I read the studies, here's my summary.

Neuroinflammation and peripheral nociception (Nociception is the neural processes of encoding and processing noxious stimulias. I had to look it up.) are understudied and unaccounted for in previous studies when dealing with RLS.

This is inline with my experience. It's not surprising that a NSAIDs can be effective in patients with Refractory RLS.

The second study has biomarker potential: Elevated S100A12 and ADM could rank patients into inflammatory subtypes. This would help in situation where IV iron or CGRP inhibitor should be considered! This is really good news, but more studies are needed.

Anti-CGRP drugs (e.g., erenumab) used in migraines may reduce sensory hyperactivity in RLS without dopamine agonist risks. I don't know a lot about erenumab, but I am looking into it.

Thanks for posting!

WideBody profile image
WideBody

Thanks so much for the studies and links! This news is really exciting for me since it hits three key areas:

Inflammation and RLS: I've been taking Ibuprofen, Naproxen Sodium, and Tylenol (also tried Nabumetone). They’ve all helped improve my RLS symptoms, even though they're a bit of a crutch.

Hypersensitivity: When I first researched RLS, I came across the term "exaggerated response reflex," which explains why a sleep mask and ear plugs are so helpful. I wear them every night and can’t sleep without them!

Adenosine: When I read about Fremanezumab’s CGRP neutralization and its potential to restore adenosine signaling, I almost jumped for joy! You know I take Dipyridamole, which is about 90% effective in reducing my RLS. Initially, I had weird dreams and headaches, but now I'm 100% RLS-free with no more headaches. It’s been the most effective with the least side effects compared to other drugs I’ve tried.

This is like a trifecta for me! I'll be following the studies closely. I also have a very understanding doctor who prescribed Dipyridamole based on a double-blind study I showed him. I need to look more into Fremanezumab’s method of action and side effects and would love to hear from anyone who has taken it.

This is such great news for those of us with Refractory RLS or "long term iron-insufficient" RLS (my made-up medical category). For those with genetic RLS, this might not be the right path.

Thanks again for the good news! Enjoy your Sunday.

Cheers

Joolsg profile image
Joolsg in reply toWideBody

Lots of studies linking migraines/headaches with RLS.It is interesting.

WideBody profile image
WideBody in reply toJoolsg

I had 23 and Me done years ago. I should look into that gene as well.

SueJohnson profile image
SueJohnson in reply toWideBody

I did too but it wasn't included.

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