Weaning off Ropinirole

[mickeyrose]

I am currently in the process of Ropinirole withdrawal. I was on 3mg per day having started on .5mg. My legs had started to play up as early as 11am in the morning, and I guess I was augmenting. My GP has put on Gabapentin 200mg at night and am reducing the Ropinirole by 0.25 each week. At the moment most night are okish, I am currently down to 2mg, however when I get a bad night (and there have been a few) I pop a couple more ropinirole. Is this undoing the good work? Gabapentin sometimes takes 3 hours to kick in too.

[SueJohnson]

You may be reducing too quickly. The usual recommendation is .25 mg every 2 weeks. You will have increased symptoms. You may need to reduce even more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. Do not take any more ropinirole. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. But in the long run, you will be glad you came off it. On the gabapentin, beginning dose is usually 300 mg gabapentin . Normally you would start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. After that 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. 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 of gabapentin 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 daily." If you take magnesium take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of them. 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...

[SueJohnson]

Did you ever have your ferritin checked? It is especially important to have it checked when you are suffering from augmentation and if below 100 an iron infusion will quickly bring it up.

[mickeyrose in reply to SueJohnson]

Yes, my bloods came back with severe anaemia, for which I am having tests to rule out any underlying health issues (none so far). If all clear I may be able to go back on HRT which I am sure will help. I am 61

[SueJohnson in reply to mickeyrose]

HRT containing estrogen makes RLS worse for some people. What was your ferritin? You should ask for an iron infusion which will quickly raise it. If you can't get it or in the meanwhile, take 325 mg of ferrous sulfate or 25 mg of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every day at the same time and not within 24 hours of each other, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. Ferrous sulfate for most people does not cause constipation but iron biglycinate is much less likely to. If you take magnesium or calcium take them at least 2 hours apart since they interferes with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron. Also antacids interfere with its absorption. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.

[Joolsg in reply to mickeyrose]

mayoclinicproceedings.org/a... serum ferritin is now the first thing RLS experts recommend. You would probably be drug free if your anaemia had been treated.

This is why education of doctors is so important. A simple blood test and either pills or, better still, an iron infusion would probably have resolved your RLS.

Show the Mayo algorithm to your GP. Hopefully, he/ she will read it at some stage.

Also have a look at Kate Condon, a retired NHS consultant talking about iron infusions and serum ferritin at the RLSUK AGM. There's a video. Home page - under 'first time visitor'.

rls-uk.org/

[Birdland in reply to mickeyrose]

mickeyrose, I had occasional RLS until I started HRT which through my RLS into overdrive. At the time I was ignorant to triggers and chose to go on ropinirole instead of stopping HRT. Horrible mistake. Sixteen years later after successfully getting off 8mg nightly of ropinirole my RLS has never gone back to only occasional. Although it is so much less intense than when I was augmenting. I guess bottom line is be very careful when it comes to hormone replacement. Best of luck to you.

[SueJohnson]

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, 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, 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, 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, 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.

[Joolsg]

Yes, you are undoing the good work. Do not add more Ropinirole. Augmentation is the overstimulation of the D1 receptors by Ropinirole. They cannot settle and repair until you stop Ropinirole.Slow down and reduce by 0.25mg every 2 weeks and ask for a low dose opioid for the increase in Severity of RLS. Codeine, tramadol, oxycodone. Or cannabis. I found smoking/ vaping cannabis was more effective than tramadol. It's now legal in the UK. Try Sapphire Cannabis Clinic. You have to pay, but it may be helpful, particularly if your GP refuses a low dose opioid.

Tell your GP that withdrawal from Ropinirole is often more difficult than from heroin.

Read Suejohnsons detailed advice.

Gabapentin takes 3 to 4 weeks to work properly and average dose is around 1200-1800mg. So 200mg won't make much difference. Also, gabapentin is not very effective while you're experiencing severe increase in symptoms (augmentation) and withdrawal. It is most effective around a month after your last Ropinirole dose. So when you're down to 0.5mg of Rop, start to increase the dose of GABAPENTIN to around 900-1000mg. You can then adjust the dose upwards once off Ropinirole completely.

It is really, really difficult but stick with it because once you're through withdrawal, the intensity will decrease and the RLS will settle.

[Little_apple in reply to Joolsg]

So much to learn from your comment! Thank you! I am on a med that is similar to Ropinirole. It’s Azilect. It’s also an MAOB inhibitor. I was prescribed it for PD. I did not have RLS when I started taking it. I am confident it has literally caused my RLS. My (clueless) doctor advice I just stop taking it bc he was going to switch me to an agonist. Needless to say, just stopping it cold Turkey did not go well.

I’m so grateful for your advice!

[Joolsg in reply to Little_apple]

If your doctor planned to switch you from azilect to Ropinirole or Pramipexole ( dopamine agonists) you probably wouldn't experience the normal withdrawal symptoms.However, if you decide to stop the azilect and do not start another similar med, you may experience withdrawal because, in your case, you also have RLS.

Typical withdrawal symptoms are a severe worsening of the RLS and the leg jerks become violent and involuntary. Sleep becomes very difficult and disturbed.

The RLS experts advise going slowly and taking at least 6 to 12 months for high doses, especially if the patient has been taking them for more than 6 months.

Cold turkey with no similar replacement would be hellish.

[Little_apple in reply to Joolsg]

A few questions:

“Typical withdrawal symptoms are a severe worsening of the RLS and the leg jerks become violent and involuntary.” After 10 days off Azilect, I was hit HARD with RLS. Based on your statement above, was what I was experiencing not by baseline but maybe worse than my baseline (normal unmedicated) state?

Wouldn’t switching to Pramipexole , being a dopamine agonist, make my RLS worse in the long run?

“Cold turkey with no similar replacement would be hellish.”

Oh yes, it was hellish! My neuro literally said, “you don’t have to wean off, it does barely anything anyways.” I’m looking for a different neurologist! He gave other questionable (bad) advice regarding my PD. He’s a movement disorder specialist from a major university. Stopping Azilect cold Turkey was literally petrifying. I did not sleep at all, not a moment, for 4 consecutive nights. I bounced on a trampoline and stood on a vibration plate until I could no longer stand up from exhaustion.

I can not remain on Azilect because it’s worsening or causing my RLS. But I have PD.

I’m sorry I’m taking so long with my questions. Do you think reducing Azilect but supplementing with Tyrosine and or Macuna Pruriens would be a way of helping ease off the Azilect?

[Joolsg in reply to Little_apple]

Switching to Pramipexole or Ropinirole would worsen the RLS in the long run.You are experiencing withdrawal from.azilect by going cold turkey and it takes at least a month to return to 'baseline RLS'.

Most RLS experts would prescribe a slow reduction and low dose opioids to deal with the increased RLS with each reduction.

I have tried tyrosine and mucuna pruriens years ago, but neither helped and I don't think they will deal with the severe withdrawal you are currently experiencing. I know some people find they help mild RLS, but withdrawal induced RLS is too severe.

If you have PD and NO RLS, withdrawal from.azilect should be much easier. Because you also have RLS, you're having a typical withdrawal experience.

I found the only things that helped were tramadol, codeine and medical cannabis. The cannabis gave me 30 mins of much needed sleep after 4 or 5 days of zero rest.

[Little_apple in reply to Joolsg]

“tramadol, codeine and medical cannabis. ”

I will try to get the medical cannabis first. Thank you for all this info!

We bought a compression therapy device. I wonder if they are popular for RLS.

I literally fell asleep with it on my legs vigorously squeezing me bc although being “squeezed” it was so relaxing as a break from RLS!

rapidreboot.com/how-does-co...

[Joolsg in reply to Little_apple]

They can help. Anything to distract from those non stop awful sensations. You should share the device info as people often want to try devices.

[Birdland in reply to Little_apple]

Little_apple, I showed my knowledgeable neurologist my bottle of macuna pruriens. She is aware of what a horrible time I had with ropinirole augmentation. She was adamant that I throw the bottle away saying that it is also a dopamine agonist Although natural it can cause same issues as ropinirole.

[HipHop1972]

Hi mickeyrose, yes it’s a dreadful journey trying to get off Ropinirole. Like you I was augmenting and RLS-UK (Joolsg) told me I needed to come of it, I was on 6mg / day I started reducing on 23 October 2022 and am now down to 3.25mg / day. I’m not currently taking any additional medication apart from Cocodamol once a day to take the edge of. As Sue mentioned you have to do it very slowly I have to wait up to 3 weeks before the next step and yes it’s hell 3-4 hours sleep max and pacing round the house pain in knees and legs. Yes you get the urge to pop more pills, but unfortunately that undoes all the great work you’ve done so I’m afraid you have to stick with it and have been told by people who have achieved a Ropinirole free life that it’s worth it. So dig deep and stick with it we will get there with the help of wonderful people who like us suffer but give such great support.

🏅

[KickingOff]

hi mickeyrose

I was experiencing absolutely exactly the same as you. I had been on as high a dosage as 8mg of Ropinorole a day but was augmenting like mad so the doc put me on 300mg of Gabapentin and told me to cut down the Ropinorole.

I was actually doing relatively well as I had cut down to 2mg of Ropinorole but, like you, found the Gabapentin took a while to kick in. Then, about four weeks ago, the RLS took a major turn for the worse and I was getting very little sleep and life was just miserable.

I took matters into my own hands and, following some research online, discovered Neupro patches were being found to be effective for RLS along with their intended treatment group, people with Parkinson’s Disease.

Ten days ago I started on the Neupro patches (two a day) and I have been almost RLS-free ever since, apart from a slight relapse when one of my patches came unstuck. I have also given up the Ropinorole and Gabapentin completely! Life suddenly seems bearable again, 65years after I first experienced RLS! Good luck, Gill.

[Joolsg in reply to KickingOff]

Gill, the Neupro patch is Ropinirole in patch form. It's another dopamine agonist.Sadly, the vast majority who are switched to the patch from Ropinirole or Pramipexole experience augmentation again within the first year. You then have to start withdrawal all over and it's harder as the patch has to be cut into quarters.

As you had reached 2mg of Ropinirole, you only had around 4 months to go to be off it.

Gabapentin doesn't help RLS while you're augmenting. A low dose opioid helps the withdrawal symptoms with each drop.

I hope you reconsider and look at the relevant articles. Dr. Winkelman explains it well in this paper.

Medical cannabis is also very helpful to reduce the flare up of RLS symptoms with each reduction.

sleepreviewmag.com/sleep-tr...

[SueJohnson in reply to KickingOff]

Have you had your ferritin checked? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you advice.

[Linda-In-Shelton]

I was so fearful of withdrawal that I quit cold turkey 3 years ago. I don't recommend it and it certainly isn't the preferred way, but it worked for me. It was horrible. I am so glad to be off it.

I tried every which way to get help to withdraw safely. I couldn't convince my doctors that augmentation was even real. I currently take 1200 mg gabapentin. I've had no symptoms of RLS. I still don't sleep well, however, and I would bet I still have the leg movements at a lesser level. I didn't perceive side effects from gabapentin as I've seen mentioned here.

I take an iron supplement once a week to prevent iron deficiency. Don't know whether I need it. I've tested normal to low, but never unusually low, especially since menopause.

[SueJohnson in reply to Linda-In-Shelton]

Do you divide the 1200 mg of gabapentin into 2 doses 2 hours apart as it is not as well absorbed above 600 mg? For example take 600 mg 1 to 2 hours before bed and the other 600 mg 2 hours before that. If not, you may find you can reduce your dose to 1100 or even 1000 - still taking 600 mg1 to 2 hours before bed and the remainder 2 hours before that. Also f you take magnesium take it at least 3 hours before or after taking gabapentin or pregabalin as it will interfere with the absorption of them. On the iron, improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you advice. In the meanwhile take your iron every other day at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take magnesium or calcium take them at least 2 hours apart since they interfere with the absorption of iron. Don't take tumeric as it can interfere with the absorption of iron. Also antacids interfere with the absorption. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after after 3 months.

[billjack2]

I have not had to withdraw so can't give you any advice I'm afraid,Been on ropinerole for 15 years and apart from an increase once have had no problems think for me there a miracle,Hope you manage to sort it

[Opie__]

I have been off Ripinirole since 11/14/22 but I only took 1 1/2 Requip at the time. It wasn't too bad til I was completely off and then I didn't sleep much for about 3/4 weeks. I started Gabapentine 900 mg when I was down to 1/4 mg. Like Sue and Jools said, it didn't help any for about 3/4 weeks and then kicked in. Cannabis is not legal in my state but I started taking CBD oil 3%, not sure how much help it was but I am still taking it just in case. Thankfully I am retired so work was not a problem. I am RL free except for a few twitches once or twice a week. The thing that helped me the most was cleaning or exercising when the RL started. Once RL kicked in (could be right as I went to bed or several times a night), I would get up immediatly and exercise or clean for a couple of hours. I could sleep then for an hour or so and the cycle would start over. It isn't easy but so thankful to be over it. Be sure to ask any questions on here, there are so many knowledgable folks that helped me "kill the beast" of Ripinrole. Good luck

[CoMtWo]

I'd strongly suggest you not add back your ropinerole, as that will undo weaning off it. Rather, take your gabapentin earlier in the day and more before bed. It is a struggle - it too ne 6-7 weeks to get off Pramipexole by upping my gabspentin as I reduced the Pramipexole. But once off, after a week of just being on gabapentin (600mg taken starting late afternoon, then before bed in 100 mg increments). After that, I went on one 600mg tablet of Horizant atv5pm with food. I'm still on it after 5 years and generally pain and fidget free. Stay the course.