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Restless Legs Syndrome

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Coming off Mirapexin

Amhain profile image
12 Replies

Hello everyone,

I've had rls for 40 years and I've been taken mirapexin for years but am now off it for 5 weeks due to augmentation and sleep disturbance. I started on 75mg pregabalin increased to 175 mg over a couple of weeks but to no avail. I took tramadol for a flare up of arthritis 100 mg in the morning and 100 in the evening, and it helped greatly. The question is should I stay on this combination or increase the pregabalin to 300 mg as it seems to be the go to dose, and ease back on the tramadol when the flare up esses.

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Amhain profile image
Amhain
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12 Replies
SueJohnson profile image
SueJohnson

Assuming you have been on the pregabalin for at least 3 weeks since it takes that long to fully work, I would increase the pregabalin by 25 mg every couple of days. If you get to 300 mg and it is still not helping then your dopamine receptors have been damaged by your years on mirapex. Then you can come off it since it isn't helping, but you will need to do it very slowly or you will have withdrawal effects. If you do it slowly, you won't have any. You can continue to use the tramadol since it helps and if you get to the point where you know the pregabalin isn't helping, you might ask your doctor if you can increase the tramadol dose. Have you had your ferritin checked?

Amhain profile image
Amhain in reply toSueJohnson

Thanks Sue, I spoke to my doctor about my iron levels and he said they were normal. I believe they don't really understand about the issues with iron and rls, that what's normal for the ordinary person may not be normal for rls sufferers. I'm going to take the latest updates on rls with me on my next appointment. Also I'm wondering how much tramadol I'd need to take to control rls as it is quite severe, and the side effects of higher doses. Many thanks again.

SueJohnson profile image
SueJohnson in reply toAmhain

Did your doctor give you your ferritin number? On the tramadol 50 mg to 100 mg is the normal amount but may need to go as high as 200 mg.

Amhain profile image
Amhain in reply toSueJohnson

No Sue, he didn't give me the ferritin number, but he made an appointment to see a neurologist so I'll talk to him. With regard to the tramadol, I'm already on 200 mg daily so I expect I'll have to up that absent the pregabalin.

SueJohnson profile image
SueJohnson in reply toAmhain

Ask him for the ferritin number.

Amhain profile image
Amhain in reply toSueJohnson

Will do Sue, thank you.

wendersgame profile image
wendersgame

my iron is always "normal" and I pushed years ago for my ferritin and it was 24 even though my iron was "normal" your Hb count is irrelevant as far as ferritin is concerned.

I had to take Tramadol for back issues recently and had no idea it helped rls until i came off one night and had a terrible night.

Since then I've come off all my drugs, started a new haem iron (I was recommended to do this by someone), I'm taking a really goodmultivitamin (made sure it had B12 ) and I top up my magnesium with that too with a special magnesium for anxiety (megamag calmeze) as there are so many different magnesium salts and apparently magnesium glycinate is the best for rls.

I've had (so far 1 week in) some good success with only 1 night rls. Could be coincidence but I'm not stopping and nect time I'm in eith my GP ill talk about Tramadol as I found even half a tab helped me

Amhain profile image
Amhain in reply towendersgame

Thanks for that information, will really have to get my ferritin count, and if it's low take it from there.

Greenleaf360 profile image
Greenleaf360

tramadl is implicated in causing augmentation. There are other opio1ds are a better choice. I would recommend trying 300mg of pregabalin. All the meds have high negatives. If 300mg of pregabalin works then you dont have to open the problems associated with opio1ds. The gold standard is an opio1d if your doctor will write the script.

Amhain profile image
Amhain in reply toGreenleaf360

THANKS for that, I'll definitely try 300 mg pregabalin.

Marky1017 profile image
Marky1017

Dont be scared of opiods. They are really very effective at controlling RLS and you can usually use a smaller dose. I am currently on methadone 10mg, Ive also tried morphine ER as well each works well the methadone i like better due to a once a day pill instead of 2x a day. Finding a dr willing to prescribe opiods is a HUGE problem though. However if you can get a dr to prescribe long term opiods it will be your best bet.

Amhain profile image
Amhain in reply toMarky1017

Thanks very much, glad it's working for you, I would have no problem trying opioids, but as you say finding a doctor willing to prescribe it is another matter.

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