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Restless Legs Syndrome

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New here... Looking for options

dodonnell profile image
14 Replies

Hi... I am new here. RLS sufferer for 48 years (since age 6) and diagnosed 20 years ago.

question... what would one do for their RLS if they go off of Pramipexol? I am on pramipexol (0.5mg 2x/day) & Gabapentin (300-600 mg/day).

I've tried everything out there and am now somewhat trying CBD oil and cutting down from 600 to 300 mg of Gabapentin. I'd love to switch to CBD oil & get rid of other meds, but not sure about that. My neurologist & GP don't have much to say about it.

I'm also on Wellbutrin (300mg) for weight gain due to the medications (about 25 pounds in 2 years), Xarelto (20mg for Antiphospholipid syndrome), and vitamin D.

My regiment is not great... I still suffer greatly, but if I miss any doses, I'm headed to the nut house.

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dodonnell
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14 Replies

Hi and sorry to hear of your problem.

Firstly, the amount of pramipexole you're taking is above the official recommended dose and well above what RLS experts would say.

This is probably your main problem and it would be best for you to wean off it.

The pramipexole will most likely be making your RLS worse. In which case the gabapentin, which can be effective for RLS, won't be particularly helpful. In addition 600mg gabapentin may be little to help.

It's dangerous to stop taking prami suddenly. It can also cause severe withdrawal effects. The severity can be reduced by tapering off the dose gradually and slowly.

I found reducing it in steps of 0.0625mg quite successful. That is half a 0.125 tablet. Carry on taking the reduced dose for at least 2 weeks. You will get withdrawal effects, but these shoukd be temporary. If they've not faded after 2 weeks, wait up to 4 weeks before the next reduction.

As the prami dose reduces, you may find the gabapentin becomes more effective, but you won't really know until you've entirely stopped the prami. You may also have to increase the gabapentin.

The standard replacement for a dopamine agonist such as prami is an alpha 2 delta ligand. That is either gabapentin or pregabalin.

Some people are able to get a prescription for an opioid, either temporarily to help withdrawal or more permanently.

You can take prami and an opioid at the same time. You can take gabapentin and an prami at the same time, but it's not a good idea to take an opioid and gabapentin at the same time.

If you want to wean off both prami and gabapentin it's a good idea to wait until you've weaned off one before weaning off the other.

Iron deficiency is a major factor in RLS and iron therapy a treatment.

Here's some more information about this.

sciencedirect.com

In addition if you're takibg other medicines for any other condition these may be making your RLS worse..

dodonnell profile image
dodonnell in reply to

I have tried just gabapentin and was taking like 2400 mg which was ridiculous, and not totally working, but if I was late taking it, it was super noticeable. I also tried Neupro patch sm, med & large... all a big pain in the butt since I exercise and it would slide off or fold over. I have been offered opiods but I've always turned it down. I feel like I could have an addiction problem if I started. If I stop my pramipexole, I don't know what I would try since I know that gaba doesn't work alone, and that I don't want anything that's addictive. I'm really hoping that CBD (no THC) could be a viable option. I have never heard of pregabalin.

in reply to dodonnell

Sorry gabapentin doesn't work for you, it's not 100% effective. Pregabalin is a more potent version.of gabapentin.

CBD without THC is unikely to help.

In your case I wouldn't dismiss opioids entirely, many people take them without addiction..

For RLS only.low dose versions are used.

Merster profile image
Merster in reply to

Hello Dodonnel. I take ms contin along with my gabapentin and ropinerole of course taken at different times of the day. The morphine being a slow release tablet seems to temper and keep the ropinerole from augmenting and combined with gabapentin helps to shut down the nerve pain associated with nighttime rls and allow me a decent sleep. I would have withdrawl symptoms if I were to stop the morphine but it hasn't become an addiction . I think it might be a viable option for you to try. Two years ago I was ready to commit suicide and fortunately found this combination of drugs . I now have my life back.

JakeRLS profile image
JakeRLS in reply to dodonnell

I've been treated for RLS for over 10 years and have had it much longer than that. I've tried many of the meds that you have used with varying degrees of success. I used ropinirole and thought it was the silver bullet but after about 9 months I started to augment. To help me off ropinirole a sleep doctor prescribed Norco which has hydrocodone and acetaminophen. It was so effective at relieving my symptoms that the doctor consented to long-term use. That has been almost 4 years, so far so good. No signs of addiction or dependency and I'm very strict about the dosage and do not cheat even when the RLS occasionally breaks through. I feel like it's been a lifesaver so I would urge you to reconsider. Good luck

dodonnell profile image
dodonnell in reply to JakeRLS

Thanks for your advice. I am pretty adamant about not taking any opiod as I think I could potentially have a propensity towards addiction. I also have a clotting disorder and am on blood thinner so I cannot have anything with a nsaid. I am desperate to find a solution, but just get through everyday as best I can until something appropriate for me comes up.

Joolsg profile image
Joolsg

Listen to Manerva- great advice.

Once off that high dose of pramipexole your RLS should revert to what it was before taking dopamine agonists.

dodonnell profile image
dodonnell in reply to Joolsg

My rls was worse bf pramipexole... unbearable. I'm still suffering, but it's def better.

Joolsg profile image
Joolsg in reply to dodonnell

Do you want to stop pramipexole because of the weight gain or did the Gabapentin cause that?

Augmentation is horrible and if you’re suffering from it ( everyone does eventually on high doses- it’s a matter of when, not if) it’s best to get off it and onto pregabalin (Lyrica) or Gabapentin which both work once off pramipexole.

Opioids at low dose for RLS work very well & don’t cause addiction unless there’s a history of drug abuse & addiction.

I hope you can find a solution & resolve the RLS.

Spend a while reading the recent posts and replies- especially others taking pramipexole/Ropinirole/Neupro patch.

Redspot profile image
Redspot

Hhave tried Gabapentin and Baclofen to no avail.I have to say that Pregabslin 75mg with the occasional codeine is helping lots. I am without pain but still feel very tired....

ijsgrandma profile image
ijsgrandma

I copied my response from another post. Hope it helps you:

I get CBD capsules from Lazarus naturals online and it stops my RLS! You have to be really careful where you get your CBD. The first CBD I got locally made me sick every time I tried it. Lazarus has all their products third party tested. And no I don’t work for them. I still have some issues with getting to sleep even without the RLS. I tried THC but for it to knock me out for sleep, it leave me feeling to ‘off’ in the morning. Whenever you start taking CBD, start off slow and work your way up to what works best for you. I’m not sure it will take the RLS away if you are still augmenting but might take the edge off.

In conclusion, CBD gave me my life back. I have worked my way up to 70mg and is the perfect dose for me without breakthrough RLS. Still trying to find a good sleep solution. Planning on asking Dr about trazodone for sleep.

I’ve lived through augmentation so good luck coming down. It wasn’t fun but actually, at the time, it was a relief to go back to RLS only in evenings and nights.

dodonnell profile image
dodonnell in reply to ijsgrandma

Thanks... you say 70 mg. I see bottles with 500 mg, 1000 mg etc. I'm so confused with all this! I'm thinking that you are now taking CBD without THC, which is what I'm interested in. I don't want to have the thc or any opiods...

in reply to dodonnell

Opioids are still a good option for you. As Jools says, the ones normally used for RLS are low dose. The ones usually used are oxydcodone, methodone or more recently low dose buprenorphine.

The risk of addiction with these is less, I believe, particularly because of the low dose. Any doctor prescribing them has a duty to monitor their use. Things such as Norcan or morphine are only appropriate for acute pain or terminal care.

NSAIDS have little value for RLS.

The CBD products with THC are more likely to be more effective than CBD without. Others may confirm this, but even with THC I don't think they are particularly psychoactive. CBD can be quite expensive, you'd want to be sure it's going to work.

It is a matter of personal choice, but it's a matter of compromising between what you're accept and how severe your symptoms are.

RalphWiggam profile image
RalphWiggam

Belbuca has been a life saver for my severe RLS. Dr. Buchfurher (on the RLS.org site) introduced me to this after augmenting out of ropinerole (tried the other drugs previously mentioned but none worked) he move me to methadone low dose but it created anxiety issues (bad) so we went to Belbuca. Life changing.

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