Pregabalin users: Hi I've just finished... - Restless Legs Syn...

Restless Legs Syndrome
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Pregabalin users

Hi I've just finished withdrawal from Pramipexole now I'm taking Pregabalin 75mg along with Targinact 5mg/1.25mg prolonged release. I have been taking Pregabalin for a month but they don't seem to be working, I'm trying to get an at for my doctor tomorrow, is there anything else I should be taken to help my RLS as I have not slept for the last 48 hrs . Any feed ba k would be great. Thanks Maureen

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Hi Maureen

Well done for getting off the pramipexole, that must be a great feeling! You don’t say when your last dose was, it can stay in your system several weeks, hence the Pregabalin may not work for some time.

You are also on a very low dose, I take 150mg a night and you can go up as high as 300mg. It maybe that you need to ask your doctor to up it a little. I’ve been taking it for 4 months and am really pleased with how it works for me.

Good luck

Pam

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Hi

I've been taking Pregablin for 12 months and it has changed my life for the better. I am taking 150mg morning and the same at night. It's important to increase the dose slowly by 25mg tablet increase 7/14 days to reach a level that you are comfortable with.

At night I still suffer 'cycling' legs but this passes after 20 mins or so. I also, suffer RLS in the night when getting back into bed. But again this passes and I get back to sleep. The 'cycling' is both legs, but the RLS is always my right leg, whereas, pre pregabalin, the RLS always commenced in my left leg and eventually progressed to the right one.

I have never been prescribed Targinact, so no idea what the benefit is along side Pregablin. I have been prescribed Trazadone 75mg at night, which gets me off to sleep quite quickly (150mg tablet cut in half).

The Sleep Centre at Guy's hospital have advised me to drop the Trazadone at night and just take 300mg of Pregablin, which I did try - probably I should have given a couple of weeks, but had problems getting off to sleep, and switched back to taking the Trazadone along side 150mg of Pregablin.

After 8+ years of Ropinirole plus add ons, that never worked for me, I am now having a normal life. Yipee!

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I like what you say. I’ve just started Pregabalin and hope it works as well for me. I’m battling to come off Pramipexole. It’s hell. Down to half a tab but it’s fighting back furiously. I’ve had dark thoughts. But also high hopes.

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Don’t expect it to work until you are off the pramipexole and maybe even a few weeks after your withdrawal until it is completely out of your system.

You done so well to get to this point - don’t let it beat you now. There is life after dopamine drugs and it’s much better!

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As you come off the pramipexole you ought to be introducing the pregabalin taking 25mm tabs until you feel ok. It will be tough coming off Ropinirole but when you are off it you will feel much better when you have the right amount of Pregablin in your system,

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Hi Maureen.

I am not familiar with the drugs you mention other than replys on the forum. I was on Pramipexole 3 to 4 mg. for many years. I kicked it, with some difficulty last Jan. Fortunately, I was able to get into the RLS Clinic at Emory in Atlanta, where I live. They tried Horizant for a month, but I didn't like the side affects, so I ask for a Fe. Infusion and the Dr. agreed. Since then I have had very little trouble with my RLS. It has been an amazing turnaround for me. I still occasionally have a problem at night but can typically turn over and go back to sleep. I am fortunate and do not take any drugs for it on a regular basis. Very occasionally, if it persists at night, I will get up and stretch. If that does not work I will take a 10/325 Oxycodon/ Acetaminiphen. This happens, maybe once or twice a month. I hope my experience helps you in dealing with your RLS. I suggest you find a RLS Clinic and ask about an Fe Infusion.

Best of luck to you.

Bill

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Hi Maureen

Targinact is the only drug licensed in the UK specifically for RLS. It is OxyContin with Naloxone ( to prevent constipation) and should be taken twice a day to maintain a steady flow of opioid to the brain.

5 mg is the lowest possible dose. The studies on Targinact show the optimum dose is 30mg a day.

I suggest you discuss with your doctor and raise the dose initially to 5mg morning and night (10 mg a day) and if this isn’t effective go up to 20mg a day.

The 75mg of pregabalin should only be taken just before bed to act as a sedative and to ‘add on’ to the Targinact.

I’m sure you’ll get much better relief with a slight increase in dose of Targinact.

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Also, you’re probably still suffering withdrawal symptoms as you’ve only just come off pramipexole. It can take months for withdrawal to settle down. Raise your serum ferritin level above 100 as well- that will really help to settle the RLS.

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