When methodone doesn't work - Restless Legs Syn...

Restless Legs Syndrome

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When methodone doesn't work

lorri214 profile image
7 Replies

I have been taking 10 mg methodone for 6 months. I don't think it works because I get rls every night. However, not severe. When I get the rls I can usually walk it off. In November I got the tomac bands which help. I want to go off the methodone because of the side effects such as excessive tiredness during the day. I take several naps a day not planned. Also food does not taste good or appeal to me any more. I was always a good eater. Now the thought of food turns me off. I am going to ask my dr to take me off the methodone. I don't like the side effects and it really doesn't stop the rls. Can you recommend another rls drug that I might take. Thank you for all your help.

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lorri214 profile image
lorri214
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7 Replies
SueJohnson profile image
SueJohnson

You have tried about everything, methadone, buprenorphine (what happened on that one?), oxycodone, gabapentin (I suggested pregabalin did you ever try that?), Horizant, iron for your low ferritin.

I don't know anything else except dipyridamole which is unlikely to help because of your years on Mirapex.

lorri214 profile image
lorri214 in reply toSueJohnson

I tried the gabapentin for the neuropathy. It might work for the rls. I might have to try that again. I was not on it that long.Never tried pregabalin. When I see my dr.next month I will give her all these suggestions. Thanks.

SueJohnson profile image
SueJohnson in reply tolorri214

Let me remind you then how to take it then. Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). It will take 3 weeks before it is fully effective. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin) Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)." If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason (not sure about pregabalin).

Joolsg profile image
Joolsg

Have you tried Buprenorphine? The recent Opioid Register shows that many people have switched to Buprenorphine.If you try it- keep to the lowest effective dose. It does have side effects. Nausea at first and sweats and daytime tiredness. But everyone reacts differently.

lorri214 profile image
lorri214 in reply toJoolsg

I cant remember all the details. I tried the buprenorphine patch. It made me feel awful. I felt so bad I took the patch off. I'm wondering if i go off methodone I .could just use the bands. They help. Don't know how it would be without meds to go with it. Some people have done it I hear. I just want to feel normal again. Ever since I went off the mirapax in May 2024 I have felt like crap. I am seeing my dr. next month. I will have this discussion with her.

Joolsg profile image
Joolsg in reply tolorri214

The patches aren't as effective for most as the sublingual pills. But in USA you can only get 2mg pills. Here in UK and Europe we start at 0.2mg pills.I take 0.4mg. Claire_lc takes 0.2mg. Neither of us get any RLS. Some take 0.6 to 0.8mg.

LotteM profile image
LotteM

Reducing and stopping may help. It the Tomac appears to work, why not give it a try ? Just remember that reducing the methadone most likely will induce some extra RLS. Thus go slow and in between steps, wait until symptoms settle.

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