Getting off Neupro patch what to expect

[Bat3353]

Hello friends I’ve had RLS for over 30 yrs currently I’m on Ropinorole 3mg at night and a Neupro patch 3mg things have been ok I’ve been on this for more than 10 years no side effects I’ve read on this group that it’s not suggested ok so last night I cut the patch in half and I slept ok now what should I do now and what should I expect should I replace it with other meds I tried gadapentin and it didn’t work any suggestions greatly appreciated thank you

[Joolsg]

You posted before and we were not sure what you are asking.We all cautioned against you being on 2 dopamine agonists at high dose because they will inevitably worsen your RLS.

Are you RLS free? Why did you try gabapentin if you were on Ropinirole and Neupro?

I am guessing that you are NOT RLS free and your symptoms are actually getting worse which is why you tried gabapentin.

Gabapentin doesn't work if you are experiencing augmentation. Gabapentin only works around 4 weeks after your last dose of Ropinirole/Neupro.

If you dropped 1.5mg of Neupro patch without withdrawal symptoms- that is great news.

Normally we suggest reducing very slowly.

You could try dropping the other half patch in 2 weeks time. If you get severe RLS- you will know you are reducing too fast.

SueJohnson suggested you tell her where you are in the USA so she can direct you to an expert. I think you should do that.

[Bat3353 in reply to Joolsg]

Hi what do I do afterwards and also how do I get off ropinole I’m on 3mg at night

[Joolsg in reply to Bat3353]

You have to get off ALL dopamine agonists.Here's the withdrawal schedule from our website.

rls-uk.org/useful-resources

This is a UK help forum run by RLS-UK.

Scroll down to Useful Resources.

Are you still on the Patch AND 3mg Ropinirole?

To reduce the patch- cut a 1mg patch and reduce by a ¼ every 2 weeks.

Alternatively switch to 3mg additional Ropinirole and then reduce Ropinirole pills by 0.25mg every 2 weeks.

You get withdrawal symptoms at each reduction. You can ask for 30mg codeine, 50mg tramadol or 10mg oxycodone to take for 4 or 5 nights to settle the symptoms.

Or try medical cannabis.

When you are 4 weeks away from dropping the last dose- start gabapentin or pregabalin at night only.

The dosing is set out on RLS-UK website under 'medications'. There is a separate table of doses and timings.

Withdrawal takes months and can be brutal.

You also need to ensure your iron levels are above recommended levels via pills/infusions.

I've just noticed that you're already down to half the patch. Are you now on half a patch and 3mg Ropinirole. Or just 3mg Ropinirole?

If 3mg Ropinirole , reduce by 0.25mg every 2 weeks. You can go faster if you tolerate the withdrawals.

Start the gabapentin or pregabalin 3 or 4 weeks before last dose.

[SueJohnson]

That's great that you were able to cut the patch in half without any side effects. I would wait a few days and see if this continues. Then try cutting the remaining half in two and see how you do. Normally you would wait 2 weeks between reductions and wait until your symptoms settle.

Once off the patch then continue by reducing by 25 mg of ropinirole every 2 weeks but check if you are on the slow release ropinirole . The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut if needed.

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, beginning dose is usually 300 mg gabapentin (75 mg pregabalin). (Pregabalin is more expensive than gabapentin in the US.) Start it 3 weeks before you are off ropinirole (pramipexole) although it won't be fully effective until you are off ropinirole for several weeks which is why it didn't work for you. 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 don't take it within 2 hours for the same reason (not sure about pregabalin).

Have you had your ferritin checked? If so what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.

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...

Did you ever see Dr Nura Festic at Jacksonville Sleep Centre who I recommended to you?