Aimovig

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jairalhill
Posts: 6
Joined: Thu Mar 07, 2019 11:30 pm

Aimovig

Post by jairalhill »

This could be sheer coincidence, but it's sheer fortuitous. I was ready to go out of my mind. Full body RLS. I didn't know where to turn. Knew my GP didn't have a clue how to help. However, I suffer from chronic migraine as well so I think out of desperation in wanting to help me, he decided to try Aimovig for my migraines. So guess what. Not only have I found relief from my migraines, the RLS has settled down to just its normal, mildly irritating wiggles at night. Can anyone explain it? All I can say is HALLELUJAH!

stjohnh
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Location: Palo Alto, California

Re: Aimovig

Post by stjohnh »

Interesting if this is a real effect. Aimovig is a calcitonin gene-related peptide function inhibitor. Calcitonin gene-related peptide receptors are apparently found throughout the body, but mostly their function is unknown (other than related to migraine headaches). It is possible you have found a new physiologic path that RLS uses. Until today I'd never heard about this gene or the receptors.
Blessings,
Holland

ViewsAskew
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Location: Los Angeles

Re: Aimovig

Post by ViewsAskew »

Darn glad for you!!!!
Ann - Take what you need, leave the rest

Managing Your RLS

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.

badnights
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Location: Northwest Territories, Canada

Re: Aimovig

Post by badnights »

@ jairalhill How long has it been working? Please keep updating us! If this effect lasts, it could be a new thing to try for many of us.

PS I'm going to move this Topic into the Prescription forum. A shadow topic will remain in Physical Treatments.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

jairalhill
Posts: 6
Joined: Thu Mar 07, 2019 11:30 pm

Re: Aimovig

Post by jairalhill »

Got my first Aimovig shot on May 1 so it's very early. But the effect on the RLS (and migraines) has been such a relief.

badnights
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Re: Aimovig

Post by badnights »

Wild. Very encouraging. What is the dosing schedule? How many shots to go ? How far apart are they?
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

ViewsAskew
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Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Aimovig

Post by ViewsAskew »

badnights wrote:Wild. Very encouraging. What is the dosing schedule? How many shots to go ? How far apart are they?
I can just see you sitting forward eagerly asking these questions, rapid-fire, lol.
Ann - Take what you need, leave the rest

Managing Your RLS

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.

badnights
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Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Aimovig

Post by badnights »

lol. yes, I'm very curious to hear the answers!
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

jairalhill
Posts: 6
Joined: Thu Mar 07, 2019 11:30 pm

Re: Aimovig

Post by jairalhill »

The shots happen once a month, self-administered like an epipen-type injection. Two dosage amounts are available: 70 mg and 140 mg. I'm taking the 70 mg. It was interesting. Near the end of the first month, the migraines happened rapidfire and the RLS (really starting to dislike that name "leg" since it's more than the legs that are affected) got worse. The second dose of Aimovig settled the migraines down right away, and the RLS calmed down within a few days to its "normal" annoying hours instead of all day long. I'm hopeful. Let's see what Month Three brings. I think the manufacturers of Aimovig need to do a study for RLS sufferers. It's expensive stuff: $575/month, and insurance companies don't like paying for it.

badnights
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Re: Aimovig

Post by badnights »

Unless -- - some feature of the migraine was causing the WED/RLS; like the WED/RLS was a side effect of the migrains. Then taking care of the migraines would take care of the WED/RLS. In which case aimovig will be useless to those of us without migraines.

Well, that's a depressing thought! But it has a fairly benign side-effect profile (so far; it's too new to understand long-term effects) so maybe I can be a guinea pig - convince my doctor to try it on me.

By the way, if you hate the RLS name, another official name exists, and that's Willis-Ekbom disease (WED). Either one is acceptable. The Foundation chose to go back to RLS because they felt their advocacy work would be more effective without having to promote a new name. But the WED name is being used and hopefully - if we keep using it ourselves - will gradually take over in the medical literature.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

jairalhill
Posts: 6
Joined: Thu Mar 07, 2019 11:30 pm

Re: Aimovig

Post by jairalhill »

Okay, folks, here's the latest. After a thorough discussion with my neurologist, we've upped my dosage of the Aimovig to once every two weeks (one 70 mg every two weeks). The Once a Month injection was controlling the migraines for the month, but for the RLS, the effect was wearing off after about 2 - 2 1/2 weeks. So, my neurologist shrugged her shoulders and said, "Let's try a shot every two weeks and see how you do." All I can say is Yippee Skippee. Yes, I still get pretty restless between about 3-7 p.m., waiting for my first dose of ropinirole for the evening, but I'm so so so much happier. It's not a 24/7 restless body marathon any more; just the normal don't-get-me-out-of-my-normal-evening RLS routine. I don't know how to get Amgen Novartis' attention, but I think this drug has a greater application than for migraine sufferers. Anybody know how to get a trial drug study started?

ViewsAskew
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Re: Aimovig

Post by ViewsAskew »

That is great news!

Did you have the full body RLS before the ropinerole? Just wondering if you are augmenting on it.
Ann - Take what you need, leave the rest

Managing Your RLS

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.

RLKamm
Posts: 3
Joined: Mon Feb 17, 2020 5:55 pm

Re: Aimovig

Post by RLKamm »

I am new to the forum. I’m a physician. I’ve been on Aimovig for over a year. It has had its ups and downs for my migraine. Even switch to a different class of drugs. Now I’m back on it and it is working great for the migraine. However, the RLS it’s worse than ever. Sorry to be the bearer of a bad review.

Brynmr
Posts: 70
Joined: Sat Jul 21, 2018 3:15 pm

Re: Aimovig

Post by Brynmr »

RLKamm wrote:I am new to the forum. I’m a physician. I’ve been on Aimovig for over a year. It has had its ups and downs for my migraine. Even switch to a different class of drugs. Now I’m back on it and it is working great for the migraine. However, the RLS it’s worse than ever. Sorry to be the bearer of a bad review.
Not for me. I bailed out at $575 a month.

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