Reducing ropinerole dosage

[cesoni]

can I go from 0.75 to 0.50 dosage of Ropi without adding anything to compensate for the decrease?. Im taking 600mg Gaba and 0.75 Ropi but I would like to eliminate Ropi completely. My Dr said 0.75 of Ropi is small enough that I wont have augmentation again.

[Madlegs1]

Your doctor hasn't a clue.

You are right to try and get off the Rop.

Go down by as small a dose as is possible and take a week between drops. Don't be afraid to take a rest if that is too fast.

The Gabapentin won't help with the withdrawals. Don't take any form of magnesium within 3 hours of the Gab.

Good luck.

[cesoni in reply to Madlegs1]

Can i keep the 600 gaba?, I don’t want to increase it. I want to eliminate ropinerole and just keep taking 600 of gaba. Doable?

[Madlegs1 in reply to cesoni]

Yes you keep taking the Gabapentin. It won't help the withdrawals, but will help in the long run.

At that point you may have to increase the dose- but we'll meet that when the time comes.

Sue has given you good advice on reducing the Rop, so do follow that

And jools advice on getting a low dose opioids will certainly help in the later stages.

All the best..

[cesoni in reply to Madlegs1]

That’s my fear that after im off ropinerole i will need to increase gaba to 1000 or more suffering the side effects from gapa which are not great like lost of libido.

[Madlegs1 in reply to cesoni]

Get off the Rop first.

Then you can address other issues.

As long as you remain on the Rop, or any dopamine agonist, you will suffer augmentation, which will only get worse. Trumping any possible alternative.

Just do it..

[cesoni in reply to Madlegs1]

Got it. Thank you! What i don't understand is how is it possible to remove 100% of the Ropi when that was what your body was using to treat RLS without replacing it with something else?. Once you decrease the dosage the symptoms will come back so you either take the drug or suffer the illness. What am i missing?

[SueJohnson in reply to cesoni]

Have you taken 1000 mg and suffered from loss of libido? If not you are worrying needlessly as that is relatively rare.

[teakabeagle in reply to cesoni]

600 of Gaba is it idly to be enough. Ave dose for gaba in 1200-1800. Gaba takes 3-4 weeks to kick in and it may take longer and need higher dose. Having been on a DA can make Gaba less effective.

[SueJohnson]

You will augment again!

Reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. 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.

Ropinirole and pramipexole 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 but they are not up-to-date on the current treatment recommendations.

Gabapentin won't be fully effective until you are off it for several weeks. After you are off ropinirole for several weeks increase it by 100 mg 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.

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. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin 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 . According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ."

Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.

If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 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 up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise.

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, C, 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. Keep a food diary to see if any food make your RLS worse.

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.

[cesoni in reply to SueJohnson]

Can i keep the 600 gaba?, I don’t want to increase it. I want to eliminate ropinerole and just keep taking 600 of gaba. Doable?

[cesoni in reply to SueJohnson]

What i don't understand is how is it possible to remove 100% of the Ropi when that was what your body was using to treat RLS without replacing it with something else?. Once you decrease the dosage the symptoms will come back so you either take the drug or suffer the illness. What am i missing?

[SueJohnson in reply to cesoni]

You will eventually replace it with gabapentin which should work. Unfortunately you will suffer coming off it as mentioned above but it is worth it as many people on this forum will tell you.

See if you can get kratom or cannabis temporarily to help or a low dose opioid temporarily. To convince your doctor print out the appropriate sections of the Mayo Algorithm to show him/her and emphasize you just want it temporarily to come off ropinirole.

[cesoni in reply to SueJohnson]

Thank you

[cesoni in reply to cesoni]

Sue, one last question. Right not I’m taking 0.50 of ropi and 600 of gaba every. Night. Knowing that gaba it’s not fully effective until I’m completely off of ropi, can I assume once I’m off ropi my 600 dosage of gaba effectiveness will be enough ? Also, will pregabalin be better than gaba, same side effects? Thank you

[SueJohnson in reply to cesoni]

600 mg is a low dose so it is not likely to be enough. Both pregabalin and gabapentin are OK but I would stick with gabapentin for now since you are already on it and have no side effects.

[Marzipana in reply to SueJohnson]

Hi Sue, this is Marzipana jumping into the ring again. My doctor prescribed one Hydrocodone-Acetaminophen 5-325mg at bedtime. I've done this for a week with the only result being constipation. I think my one and only dose of buprenorphine.7mg was too high, as I got extremely sick on it 2 weeks ago. I want to try a lower dose but doubt my doctor will prescribe it. This past weekend I took one .5mg Ropinerole tablet 2 nights in a row, as I was at a hotel and desperate to sleep two nights in a row. I've taken a .5mg Ropinerole one night a week since last December with no sign of augmentation. But last night (Sunday) I was up from 9pm until 4am with no sleep/constant RLS! I finally went to the gym at 4:15AM, worked out, showered and drove to an appointment for a bone density scan at 7am. I had terrible RLS in the car and while waiting for the appointment. During the scan, the technician had to keep starting over, as my legs wouldn't be still! Could that be augmentation from taking the .5mg Ropinerole 2 nights in a row?? My symptoms have been getting more and more out of control for months, but possibly because Pregabalin, Clonazepam, Tramadol, and Hydrocodone are not working for me. I have filled out an application to be seen by Quality Care in Rochester, but wonder what options I have til then. I've got 90 Gabapentin 300mg capsules in my drug stash from when I was still on it. Would it be bad to start up on that? Your conversation with Cesoni fueled my curiosity. Would a 300mg capsule be OK to start with? Thank you Sue, and anyone else who may have insight on this. HealthUnlocked rocks BIGTIME!

[SueJohnson in reply to Marzipana]

Taking it 2 nights in a row would not cause augmentation but if the 2 nights were Friday and Saturday, it is possible it was from withdrawal from the ropinirole.

Since Lyrica at 450 mg didn't work it is unlikely gabapentin will.

Yes .7 mg (corrected I meant 7 mg although .7 is still more that the starting dose I suggested of .25 mg) is a lot of buprenorphine. One should start with a quarter of a .2 (corrected I meant 2 mg tablet) which is the smallest one can get in the US and slowly increase giving your body time to get used to it. I would certainly try to see if your doctor will prescribe it.

You could try taking 2 or even 3 of the Hydrocodone-Acetaminophen 5-325mg but you will have to deal with constipation. For constipation try 2 magnesium citrate every night, drink a lot of water, get plenty of moderate exercise, eat two kiwi­fruits a day which works for 50% of people, drink oolong tea which may help RLS or Smooth Move tea and eat foods with lots of fiber. The best OTC fiber supplements contain psyllium - Consumer Reports recommend OTC osmotic laxative with polyethylene glycol (PEG): GaviLAX, GlycoLax or Miralax. There are many prescription laxatives but they should be a tried after everything else. Fybogel (ispaghula husk) is a prescription laxative is recommended by the NHS. It can take 2 to 3 days to work.

[Marzipana in reply to SueJohnson]

Thank you for your prompt reply, Sue! I'm not sure of the time difference between the US and UK, but from your responses, it seems as if you don't sleep. I will stock up on Smooth Move tea and give the extra Hydrocodone pills a try. If I take them together, it would be like an NA cocktail....I could name it HydroSmooth! Cheers!

[SueJohnson in reply to Marzipana]

5 hours time difference. It is 4:59 pm here on the east coast and I do get up early -at 5:00 am or 6.

[SueJohnson in reply to Marzipana]

Looking back at my reply I said .2 mg is lowest dose. I meant 2 mg, so did you mean 7 mg or point 7 mg?

[Marzipana in reply to SueJohnson]

The Zubsolv is 0.7-0.18Mg (Buprenorphine Hcl-Naloxone H

[Joolsg]

You will augment again. Find a new doc.And you will suffer withdrawals so find a doc that will prescribe a low dose opioid to settle withdrawals at each dose reduction.

[cesoni in reply to Joolsg]

Can i keep the 600 gaba?, I don’t want to increase it. I want to eliminate ropinerole and just keep taking 600 of gaba. Doable?

[SueJohnson in reply to cesoni]

Certainly although it is unlikely to control your RLS at that dose.

[Joolsg in reply to cesoni]

Gabapentin is now first line medication to treat RLS, so of course you should stay on it. But, as SueJohnson says, 600mg is an extremely low dose.But first get off Ropinirole by dropping 0.25mg every 2 weeks. Your RLS will flare up badly at each reduction and you may need a low dose opioid to help settle withdrawals.

Once off Ropinirole, you can slowly increase Gabapentin, but follow the dosing recommendations on Mayo algorithm. So if you take, say 1200mg, take it in two split doses of 600mg 2 hours apart.

[cesoni in reply to Joolsg]

That’s my fear that after im off ropinerole i will need to increase gaba to 1000 or more suffering the side effects from gapa which are not great like lost of libido.

[Joolsg in reply to cesoni]

Then speak to your doctor. If gabapentinoids' side effects are intolerable, low dose opioids are the other possibility.Many doctors have opioid bias, but the research and evidence is now available to show them that RLS patients do not seem to suffer the same issues that pain patients encounter.

Addiction and tolerance do not seem to happen ( unless there is a history of drig abuse).

See Dr Mark Buchfuhrer. As SueJohnson says, he's one of the world's top RLS experts.

[SueJohnson]

If you give me the city and the state you live in I might be able to give you the name of a knowledgeable doctor.

[cesoni in reply to SueJohnson]

Palm desert, California

[SueJohnson in reply to cesoni]

You are in luck. One of the world's experts in RLS is Dr Mark Buchfuhrer 11480 Brookshire Ave #108 Downey, CA 90241. [phone]. He is not close but you would only have to see him in person once if that and could then do telehealth.

[cesoni in reply to SueJohnson]

Thank you!

[RLSAndy]

Hey - i am exactly where you are im on .75 ropinirole and 450 pregabalin. I have good and bad days, atm going through hell as im a chef and working 16 hour days, being on my feet all day really effects my RLS.

Codeine has been a massive factor to me getting the DAs down i take 1 to 2 x 30mg codeine that i have to acquire as my Dr is pathetic, sometimes they work better than others. Im hoping to keep dropping the DAs every month or so as every time i drop it’s very hard with augmentation. I average about 6.5 hours sleep which i can just about function on.

Good luck in this hell like journey, all the advice the guys have given is absolutely spot on and has saved me mentally and physically.