Getting off DAs: I’m weaning off the... - Restless Legs Syn...

Restless Legs Syndrome

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Getting off DAs

Need-Sleep
Need-Sleep

I’m weaning off the Neupro patch. Just like all the other DA drugs I kept creeping up the dose of the patch as well.

Anyway, if anyone has any encouragement for this awful journey off, I could use it. How long did it take you? What do you use now?

Thanks

26 Replies
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Hi, I've been weaning off ropinirole for quite some time now. It would be a good idea to taper down very very slowly. My dosage was very high and initially, I started tapering down quite quickly but after about 4/5 months, I found it too hard and started to taper down more slowly at 0.5mgs every 3/4 weeks and eventually by 0.25mgs every 2 weeks. I won't lie, it wasn't easy. Unfortunately symptoms do become exacerbated and you will suffer with sleep deprivation. I found that each time I tapered down it took about 5/7 days for things to improve. My sleep did improve as did my symptoms. I then used the rest of the time to "recharge" a bit before I took the next step to taper down. I did eventually resort to my GP for help and initially I was fighting a battle with him but eventually he was on my side. I took my last 0.25mg pill 10 days ago. Initially it was pretty grim, no sleep, exacerbated symptoms again BUT my GP prescribed me opiates to help whilst tapering down and for the final withdrawals. Things have slightly improved but it does take a while for the DA's to leave your system and until I reach that stage I don't know how my RLS will be.

I am not sure whether you intend to try and manage your RLS without any further medication once you are off the DA's. You may find it difficult without meds. In addition to the opiates I have been taking 900mgs of gabapentin whilst I was tapering down and still do.

What is your plan of action? Are you taking any other meds other than the patch? It will be of some help to read posts on people's experiences and advice on how to tackle tapering down and eventually stopping the DA's. In particular those who are weaning off the neupro patch.

I would add that everyone's experience in tapering down and going through withdrawals differ. So do read how others have dealt with this. Good luck in your endeavours.

Good advice from rls-insomniac. It's a daunting task to wean off a DA, but it can be done and it's well worth doing.

It's correct that the slower you do it, the less severe the withdrawal effects will be. How small can you cut the patch?

If you're going to replace the neupro with gabapentin, it's a good idea to start taking it at least 3 - 4 weeks before stopping the neupro. IT may or may not help with withdrawal effects, but it may take that long to work effecfively.

Some folks take a benzodiazepine or a "Z" drug temporarily to help with the sleeplessness, if your doctor will prescribe one. An opiate can be helpful, but generally speaking you'd be very lucky to find a doctor to prescribe one for RLS.

As a last resport some folk try paracetamol and codeine - over the counter.

Follow the instructions - paracetamol is dangerous if you exceed the stated dose.

It really is worth sticking it out, don't give up!

I’m sorry you’re having a tough time.

I never went on the patch as I augmented on Ropinirole and withdrew in 2016 & had been advised by the knowledgeable people on here not to touch another DA. Sure enough, the useless neurologist at King’s tried to persuade me to use Neupro ‘ it has the least risk of augmentation’. I knew this was incorrect if you have already augmented on a DA.

It took me 3 months to get off 4mg of Ropinirole and I wish I had reduced more slowly.

As rls- insomniac has advised, withdrawal is different for everyone but you will be so glad you did it. The daytime RLS will disappear and nighttime RLS will be less intense. You may even be lucky and get 100% cover with new meds.

I found deep heat cream helped a little, very hot baths, deep tissue massage and,best of all, illegal cannabis. It gave me 20-30 mins of desperately needed sleep during the worst nights.

The difficult time is the 10-14 days after the last dose / application of the patch.

It can take months to find the right combination and timing of meds so discuss what you will take now with your doctor.

Pregabalin is a good option.

Stay strong- you can do this.

Need-Sleep
Need-Sleep in reply to Joolsg

Oh no, it will be worse possibly for 2 weeks after?

The dr had me on 4 mg patch- obviously way too much, I am down to 1 mg, hope that gabapentin will work when DA is out of my system. The high 4mg dose made me have lots of MS symptoms- I was convinced- but now all those symptoms are gone—it was the DA making me so sick. Anyway, I feel so much better during the day, but of course nights are bad. I tried weaning off once before and quit—-was just so hard. I had high hopes patch would work...

Now I feel like I have nothing to lose- DAs at no matter what level no longer work, and now I realize how awful they made me feel. I hope I can get off, I use CBD oil, it is hit or miss if it works.

Do you use a sleep specialist? Neurologist seems just as clueless as regular doctor.

Joolsg
Joolsg in reply to Need-Sleep

I received the best advice from this site. My MS neurologist admitted she knows very little about RLS. My GP was appalling. By the time I saw the RLS team at King's College in London ( 9 month wait), I had already been through withdrawal and had started Oxycontin and pregabalin after researching and buying "Clinical Management of RLS" by Drs Buchfuhrer, lee, Allen & Hening.

I no longer trust doctors or neurologists in the UK as they know next to nothing and have given me negligent advice and treatment in the past.

I read research articles from the USA and am part of a US study on low dose opioid use for RLS run by Dr Winkleman in Boston, Massachussets.

It is very rare to find a GP or neurologist who knows enough about RLS to treat us safely so I educated myself. Many others have done the same.

You have come to the best site. Spend a few hours reading all you can on here about dopamine agonists and augmentation and withdrawal.

The advice from US experts is to reduce dopamine agonists as slowly as possible ( minimum 3 months, up to a year). They suggest using an opioid like tramadol or oxycontin if the withdrawal symptoms make reducing too difficult.

The 2 weeks after the last dose are the toughest for most people. Expect little or no sleep and constant twitching and leg jerking. It seems that the higher the dose and the longer you've been on DAs, the more difficult the withdrawal.

raising your serum ferritin above 100, preferably 300, can also help reduce augmentation and make withdrawal a little easier so get a full blood count test.

Also make sure you're not taking any other meds that can worsen RLS, like anti depressants and anti histamines.

Take it slowly- now is the best time to be doing this if you're not a key worker and don't have to be at work during lockdown.

I wish you the strength to stick with it. You can do it.

rkatt
rkatt in reply to Joolsg

The same thing happened to me. I augmented on Pramipexole and Dr Lechziner of Guys tried to put me on the patch. Needless to say I wasn’t having any of it!

Joolsg
Joolsg in reply to rkatt

Oh my god. I thought he was one of the decent neurologists. What is it with British neurologists? I honestly think it’s because they don’t see/ treat enough people with RLS. They don’t realise how common augmentation is and how insidious DAs turn out to be. We just have to keep putting out the message on here that once you’ve augmented on Ropinirole or pramipexole, you’ll augment again very quickly on the patch.

I too was on a 4mg Neupro patch and am now told by my Movement Disorder neurologist and my MS neurologist that my RLS is so bad because of it. It took 6 months for me to get down to 1 mg. I also take Methadone 5mg twice daily and it has saved my life . I would love nothing more than to get off the patch completely but have tried many times and just can’t do it. I so feel for you. It is not an easy task to withdraw but can be done. The slower the better as others have said. Perhaps Gabapentin will help alleviate your symptoms while you withdraw from the patch, but opiates would be best. Good luck to you and stay strong!

Joolsg
Joolsg in reply to divasmom8

I really hope you manage to get off that last 1mg patch. You must be in the USA to be able to get Methadone . I know it’s regarded as one of the safest opioids ( and most effective) for RLS.

divasmom8
divasmom8 in reply to Joolsg

Yes I am in the US, Colorado specifically . We have an amazing teaching hospital here with the most up to date treatments and research for movement disorders and MS. I am very fortunate!

nini8082
nini8082 in reply to divasmom8

Im curious about the methadone. I was thinking of asking my new neurologist on Tuesday if she thinks this would be a good thing to try for me since I've been on every other medicine out there. I am so tired of this. Have suffered for years.

divasmom8
divasmom8 in reply to nini8082

It has been my experience in the US that most neurologists won’t prescribe methadone. Please find a neurologist that specializes in movement disorders as they are more up to date with effective treatments than typical neurologists. I once had a neurologist doctor tell me he would NEVER have put me on Methadone but would have continued to prescribe DA’s. It’s very very frustrating and does more harm than good!

I go to my regular doctor in a few hours. Doctors now scare me...trying to get my point across seems impossible. I am asking her to refer me to a sleep specialist in hopes of someone knowing about augmentation.

I also got off Prozac in hopes that may help, now use Wellbutrin. My anxiety comes from all day worries about going to bed- will it be an awful night or a bad night. I’ve been on DAs for 12 years now. If they would have simply checked my iron...

It is very scary to think I’m trapped by all this. I’m still stunned how awful the high dose hurt my health- my upper body, shoulders would twitch nonstop, or it would be my legs- no sleep. Then in the day I had awful swelling and water retention, my joints hurt it became hard to get on/off the toilet, I would have awful stinging feeling all over my skin, and very sharp pain in my eyes at random times. All that is gone now that Im weaned down to 1 mg. Now just nights are rough. I take liquid iron, calcium lactate, magnesium....b12 shot, vit D....

Tried different diets.

Will the people who said these meds were good and safe for RLS ever be accountable?

Joolsg
Joolsg in reply to Need-Sleep

I agree with everything you have said. Before you go to the doctor, write bullet points of all the key points and print off the articles on here about augmentation and DAWS.

I take my RLS medical textbook to every appointment now. Think they’re sick of me but at least my MS neurologist accepts I’ve read more research articles than she has so am more up to date. Take a friend or family member with you as well and don’t be intimidated.

A good GP will acknowledge they can’t know the latest info on all illnesses and will be willing to look at the articles and information you provide.

If I had the money I would start a legal class action against the drug companies for the trauma of Augmentation and withdrawal and the permanent damage those poisonous drugs have caused. They’ve known about it for years and refuse to send out alerts to GPs and patients and still maintain 4mg is a safe maximum dose.

rls-insomniac
rls-insomniac in reply to Joolsg

I spoke to my GP and my consultant today. I gave my GP an update of my current situation and symptoms and he wants me to start tapering down on the oxycodon which is what I had expected. That said he was happy to prescribe me with more oxycodon to keep me going for another 2 weeks. He has been beneficial in me getting off ropinirole and has been checking up on me every 2 weeks with a telephone consultation. I know that I am very lucky to have him on my side.

Then out of the blue my consultant rang me from Papworth to see how I was getting on since my initial consultation. I advised him of the progress I had made (courtesy of my GP) and he was pleased with the outcome so far. We then went on and had a discussion about DA's. I questioned him as to why consultants were still prescribing DA's for RLS in light of the side effects and especially augmentation. I said that I thought the first line treatments were starting to be gabapentin/pregabalin. Whilst he acknowledged that things were moving in that direction, he was still in favour of DA's as a first line treatment. Just unbelievable!! I then lectured him about the side effects and augmentation, the difficulty people have in coming off them etc. He said that in "his experience in working at the sleep clinic, DA's worked for 70% of people" Oh well, clearly it would seem that he's never experienced RLS. I also asked him how long he thought it would take for the ropinirole to be washed out of my system (it's day 10 for me without having taken any), and he said that as I'd been on it for so long, he thought at least a month.

That said, the consultant did acknowledge that one size did not fit all in relation to medication for treating RLS and it is very much a matter of try it and see. He also appeared to suggest that if the usual medication eg. DA's, gabapentin/pregabalin/opiods etc. didn't work, that he might be prepared to try out different meds including those that are very much off licence so to speak, in an attempt to bring relief to a sufferer. That at least, is a slightly more forward thinking response!

Joolsg
Joolsg in reply to rls-insomniac

DAs do work brilliantly for most people for many years BUT then they literally ruin your life. I suspect most neurologists who still prescribe them don’t see enough people with RLS or with augmentation. Hopefully that will change.

rls-insomniac
rls-insomniac in reply to Joolsg

Agreed, the more you take and the longer you take them, then the more ruinous they become!

I'm sure doctors seeing people and prescribing a DA will see that it works for 70% of people, it may do. Then they may never see that person again. They don't see years down the line, the suffering they're causing.

Joolsg
Joolsg in reply to Manerva

Exactly.

Manerva
Manerva in reply to Need-Sleep

Just to emphasise, you don't have to stop the DA and have nothing. There are other options e.g. gabapentin or pregabalin. You can start one of these before you stop the patch.

I’m curious. Did the patch help you?

Need-Sleep
Need-Sleep in reply to nini8082

Yes, for a while, then had to raise dose for it to work over time.

nini8082
nini8082 in reply to Need-Sleep

I have been on ambien which was years ago, Mirapex, sinemet, currently on Gabapentin 800mg and requip. I am still in torment. I wouldn't wish this on anyone.

Manerva
Manerva in reply to nini8082

The typical mimimum effective dose for gabapentin is 900mg. 800mg is probably simply not enough. If 900mg doesn't work then you can increase it further. If you get up to 1200mg and it's still unsatisfactory, it's worth trying switching to pregabalin.

Of course if you're still taking a dopamine agonist you will need to withdraw from it as you may be suffering augmentation. If you have stopped taking a dopamine agonist recently you may still be experiencing withdrawal effects.

Hopefully you're not entirely relying just on medication to improve your RLS.

Have you had your ferritin level tested? If it's under 100ug/L an oral iron supplement will help raise it. If you cab rause it to 100ug/L there's a 50% chance your symptoms will improve.

If you have a deficiency in either magnesium, vitamin B12 or vitamin D supplements in those may help. Even without being tested for these deficiencies you could try taking these supplements. It may take some time to see any effect.

I wonder if you also considered that there may be sonethibg aggravating your RLS e.g. if you're taking any other medications that are known to make RLS worse.

Update- my dr had me get an MRI because of MS symptoms (which are gone now that I’m towards the end of getting DAs out of my system). Of course the MRI was normal. She has referred me to a sleep dr, and gave me ambien and tramadol to help with my withdrawal. My routine is CBD from Haleigh’s Hope 10:1 during the day as needed for any leg pain (at times it feels like painful pressure from the sensitive inner part of my foot up through my legs). I’m unable to nap during the day still because as soon as I rest this pain will start and legs will do their dance. Early evening I start with more CBD (only 0.3 mL goes far with me at a time), then around 6 I take a gabapentin which seems to take a while to slowly make me hopeful for sleep...then I take 1/2 a Tramadol and right before I hope to sleep an ambien. Yesterday was my first day/night with zero DA in 12 years!! Makes me cry to have this accomplishment. The night, of course was still awful. My whole body goes from laying still to jerking uncontrollably into a fetal position with quite an uncontrollable “grunt”, I don’t know, maybe every 30 or so seconds? I give myself more CBD, then gave up and a bit more tramadol and fell asleep.

So, day 2 will be today without this killer drug. Yes, it “helped” me for 12 years get sleep but my body like a gear kept turning and asking for more, switching brands, then asking for more, only to give me all over my body severe RLS ( my shoulders needed to jerk in and out and of course my legs. Usually it was either upper body jerks or my legs a given night). My days were filled with anxiety over the nightmare that awaited me each night. My last option was the patch and you guessed it...my body begged for more. Until the neurologist, who has no clue, put me on 4mg patch—-which made my joints so stiff I couldn’t get up and down from the toilet, had to hold on to my husband to walk through home depo, made me swell up like a balloon, horrible pin prick feeling on my skin and behind my eyes, all with RLS awful at night. I also felt the psychotic need to divorce my husband—absolutely insane thoughts. But- this finally made me wake up to the fact that for some of us this medication is poison. I will get off. You will get off. rls.org has a video that explains what nightmare we are all going through. It helped me a lot to see and hear that I’m not alone.

Anyway- on to day two of no DA. This.Is.Hard.

Also, I’m on strong probiotics, liquid calcium and magnesium, and of course iron, vit D and B12 shot. Hopefully this will help what may have been a low iron level problem to begin with 12 years ago (I had just had a baby. They never checked iron, putting me on DA was the protocol.

I also am switching from SSRI to Wellbutrin.

Also, there are great podcasts about RLS from leading doctors to educate other doctors. These have really encouraged me as they know DAs should be the absolute LAST resort to ever give a patient with RLS because of what people like us are going through. They also give hope that when DAs are out of our system, lots of times the RLS is gone (can you imagine) or treated with iron and managed. They also say their patients have found freedom on the other side.

There is hope. I will keep journaling here. Thanks to the support on here, oh how I need it ♥️

rls.org/treatment/managing-...

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