Coming of Pramipexole

[Gizmo1coco]

I’m 59 and my earliest memory of RLS is when I was 7. I have been on pramipexole for 5 years and my symptoms are getting worse through augmentation. I take 0.18 but more nights I have to take an another one as well. I also take a gabapentine at night to help me sleep. My iron levels is 108. I want to talk to my doctor today about switching to gabapentin which terrifies me. What is the best way to do this as I want to be able to talk to my doctor already knowing the best way to do this . Thank you

[ChrisColumbus]

Welcome to the forum: unfortunately very few UK doctors know anything much about RLS, they are not taught about it and tend to follow out-of-date NHS/NICE guidance.

There is a lot of helpful information on rls-uk.org/

Pramipexole and the other dopamine agonists are no longer first line treatment for RLS amongst experts. Have you seen the RLS-UK piece on withdrawing from dopamine agonists?

rls-uk.org/_files/ugd/b0a19...

Have you had a fasting full panel iron test, as raising serum ferritin can help many RLS sufferers? If not, ask for this. See the following:

rls-uk.org/_files/ugd/b0a19...

Are you taking any other prescribed and OTC medications for other things, as some can trigger or exacerbate RLS? See this list of medications to avoid:

rls-uk.org/medications-avoid

Your doctor may or may not be willing to listen to advice coming from other than the NHS: do come back and let us know how it goes and for further advice from people who have been through what you have.

[Gizmo1coco in reply to ChrisColumbus]

Thanks Chris for you response this has been most helpful. Unfortunately I was not able to get an appointment for the doctor today but will wait to Monday until I'm off work so I get a chance to talk to her properly. I'm trying to gather as much information as possible before I speak to her as last week she suggested taking a holiday from pramipexole to reset the brain or changing to ropinirole. Both suggestion's I am definitely not doing. I'm not taking any other medication that would exacerbate RLS. Thanks again for your help

[Joolsg]

Welcome.Start by looking through RLS-UKwebsite which contains all the latest research and treatment advice, based on the USA Mayo algorithm for RLS treatment and the new AASM guidance.

As ChrisColumbus has advised- there is a Useful Resources section and you can print off the iron therapy and withdrawal section.

There's also a list of medications that worsen RLS.

Sadly, your GP will know zero about RLS- other than to prescribe dopamine agonists like Pramipexole, which are now 'end of life' treatment amongst experts.

Read all posts from the last few days headed Augmentation/Pramipexole/withdrawal.

Withdrawal is hellish. But, as Dr Andy Spector says- there's no RLS as bad as someone suffering dopamine agonist augmentation.

Once off Pramipexole, your RLS will improve and you'll find a combination that works.

When did you start gabapentin?

Did the RLS get worse at night and the GP prescribed it in addition to Pramipexole?

[Gizmo1coco in reply to Joolsg]

Thanks Joolsg for your response. Your comment about Dr Andy Spector is really encouraging. Makes me realise I'm definitely doing the right thing as I have been putting this off for a while now.

I have been on gabapentin for years as I suffer from sciatica but recently have been taking it for sleep.

I will do more research before I speak to my GP.

Thank you

[SueJohnson in reply to Gizmo1coco]

If you are taking it for sciatica you are probably taking it 2 or 3 times a day. When you are off pramipexole and take it for RLS the amount you take during the day can be in addition to what I mentioned to take at night for RLS.

[Gizmo1coco in reply to SueJohnson]

I was taking it 3 times a day but just now I am only taking 1 it a bed time to help with sleep but good to know I can intake it in addition when my sciatica is bad. Thank you

[Madlegs1]

As the others have said.

The urgent thing is to get your doctor to help you get off the Pramipexol.

It is his humanitarian duty to do this,.

As long as you are on Ropinerol, no Gabapentin is going to do twiddly pop for you.

Be firm.

Good luck.

[Gizmo1coco in reply to Madlegs1]

Thanks Madlegs1 for your response.

I'm definitely going to be firm. Trying to gather as much knowledge as possible to be forearmed.

Thanks again

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

This is my usual advice. It will repeat what others have said but add some things too.

Ropinirole, pramipexole (Mirapex) and the Neupro (rotigotine) patch are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed them but they are not uptodate on the current treatment recommendations.

First off check if you are on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular pramipexole because the slow releases ones can't be cut if needed.

To come off pramipexole, reduce by half of a .88 tablet every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

On the gabapentin or pregabalin, the beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off ropinirole (pramipexole) although it won't be fully effective until you are off it for several weeks. 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 1-2 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 divide the doses on 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 of pregabalin)."

If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium or antacids don't take it within 2 hours for the same reason (not sure about pregabalin).

Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a... You could also print out some of the things from RLS-UK and take them with you to show the doctor.

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.

[Gizmo1coco in reply to SueJohnson]

Thank you so much Sue for all this info I really do appreciate it.

Having all this info will really help when I speak to the doctor as Chris said best advice is from people who have been through this.

I have tried a few of your suggestion but some I haven't so will give them a go.

Thanks again for all your help

[Dotmowatee]

I suggest Targinact which is a slow acting opioid that is licensed in the UK for restless legs. Gabapentin did nothing for me but this drug does. I am only on a low dose.

[Gizmo1coco in reply to Dotmowatee]

I’ve never heard of that. I will look into it. Thank you