Advice needed.: Its now a week since I... - Restless Legs Syn...

Restless Legs Syndrome

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Advice needed.

Lubopepper profile image
17 Replies

Its now a week since I took my final dose of Pramipixole, 3 weeks since I started to take 2 × 75mg Pregabalin and my RLS is the most severe its ever been.My question is, is this normal for my RLS to be as severe as it is a week after my last Pramipixole and when will I see signs of improvment from the Pregabalin.

Sorry, if this question has been asked before but Ive reached desperation stage and my GP doesnt seem to have a clue of how this works.

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Lubopepper profile image
Lubopepper
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17 Replies
Huntingleroy profile image
Huntingleroy

Im sure Jules or Sue will reply but Im sure its still very early days . The first few weeks are pure hell ...I know ! You may need the help of an opiate like Buprenorphine if you can get it prescribed but thats not an easy task . Again ...I know ! Good luck

Lubopepper profile image
Lubopepper in reply toHuntingleroy

Thanks so much for replying, I think I just needed reasurrance from someone thats been through this, that it does indeed get better as like I said my GP doesnt seem to know much about this.

Madlegs1 profile image
Madlegs1

As huntinglroy has said.

Early days. It takes at least 3 weeks for Pregabalin to start helping.

And it won't cover the withdrawals from the Pramipexol --- for that you need some much stronger medications such as Tramadol or clonidine if the doctor won't give you opioids.

Hang in there-- it's not easy, and will take another few weeks.

But well worth it in the end.

Many others have done this before you, and got out the other side.

Hang tight.

Lubopepper profile image
Lubopepper in reply toMadlegs1

Again, thanks for replying this is the sort of information I needed to hear.

Dotmowatee profile image
Dotmowatee in reply toLubopepper

If you can get Targinact which is an opioid and licensed in the UK for rls, it should help. Tell your GP to do his research. I have no problem getting it and it works well .

SueJohnson profile image
SueJohnson

Congratulations for getting off pramipexole!👍 I know it wasn't easy.

I agree with the others. This is the worst time but it should soon get better and you can start increasing the pregabalin to hopefully get complete control of your RLS. 😀

Lubopepper profile image
Lubopepper in reply toSueJohnson

Thank you.

Joolsg profile image
Joolsg

Congratulations on getting this far.The WORST RLS of your life is NORMAL for the first week after stopping dopamine agonists.

The withdrawal schedule on RLS-UK makes this clear. You can expect zero sleep for the first 5 days and severe, violent leg jerks.

But every day thereafter, the RLS will be less severe as your D1 receptors start to settle.

It can take months for the receptors to settle and heal.

I just wish UK doctors would advise patients about the hellish withdrawal they can expect.

Video your nights and show your GP.

It might stop them inflicting Pramipexole on some other poor, unsuspecting soul.

Lubopepper profile image
Lubopepper in reply toJoolsg

Thanks, what you have described is exactly the way it has been. I just cant believe that doctors in this country are still prescribing this drug for RLS and then have no idea of how shocking the withdrawal is. Thanks so much for all this information, you guys on here have helped me so much already just by reading your comments and experiences. 👍

Joolsg profile image
Joolsg in reply toLubopepper

The pregabalin will start to kick in around 3 weeks after the last dose of Pramipexole. It's really difficult to get to that point.I used cannabis to knock me out for an hour at night.

If it doesn't settle after 4 to 6 weeks you can increase pregabalin.

Joolsg profile image
Joolsg in reply toLubopepper

healthunlocked.com/rlsuk/po...

Purpleyam profile image
Purpleyam in reply toLubopepper

It was the same for me Lubopepper. Violent jerking and completely no sleep. But within 2 weeks it had settled enough, and with help of Tramadol, to start seeing the light. I began Gabapentin along with the Tramadol and was so relieved to have afternoons reading, or napping, AND greater and greater nighttime rest. You'll find your own combination of relief soon. I still take cannabis oil at night to get sleepy. Best wishes to your journey!

Maymount profile image
Maymount in reply toJoolsg

I took Tramadol to help with withdrawal. I just take 2 x 50mg tramadol at 5pm n I'm fine. So glad to be off Prami. 4 months off now n alls gud. Wish u well.

707twitcher profile image
707twitcher

I’ll give you my story. I may be an outlier, but I don’t think I’m that unusual.

I was on Pramipexole for 12 years before augmenting. Thanks to this site I knew I wanted to try buprenorphine to help wean off it. The buprenorphine enabled me to come off the DA fairly quickly. But my underlying RLS symptoms are far worse than they were pre-DAs. When I have breakthrough symptoms, the worst ones are in my torso and upper arms. Fortunately the buprenorphine always relieves them quickly.

I tried gabapentin and pregabalin a few times in the first few months post-DA. But it never did anything for me. I’m apparently one of the unlucky ones with badly damaged dopamine receptors. But finally, after 13 months, I recently tried gabapentin again. It has enabled me to cut my buprenorphine dose in half, which helps with all the opioid side effects. I’m hoping with continued use, I can reduce the buprenorphine dose further or eliminate it.

But the good news is that the buprenorphine (and now the gabapentin/buprenorphine combination) does relieve my RLS, and I’m fine staying on it the rest of my life if needed. While my receptors may have healed, my underlying RLS is still there, and it’s worse than it ever was. Without meds I would have jumped off a bridge by now.

GaryHB profile image
GaryHB

Hi there. As the others said, good job for coming off the Pramipexole. My own experience was that the Pregabalin didn't work when I tried it after stopping the Prami. Some suggested the brain needed time to heal. Anyway I started on Tramadol and it stopped the rls completely. I am still on it. I can't advise you but just wanted to throw that out there in case it helps. All the best mate.

Golferie profile image
Golferie

please keep going, it’s so tough I know! Years on Pramipexole caused augmentation. I’m heading for 2 years off it but without 15mg of CodiPAr I would still be in a bad place. I know it’s not a lot but it works, plus of course zero sugar products from 3pm daily.

violetta254 profile image
violetta254

You will need more time to know if pregabalin will work. but It may never work if your dopamine receptors are damaged by the DAs. It did not help me at all. At least temporarily you will probably need an opioid. If you have trouble getting them from your doctor, they might be able to at least prescribe some temporary oxycodone or tramadol to get over the worst. You might need some back up research to help them understand. or you might have to see a neurologist if you aren't already to get them prescribed. In the US, I would say go to the RLS foundation website but I don't know about the UK.

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