Restless Legs Syndrome (RLS) Discussion Board

Dr Buchenfuhrer recommended methadone to get me off ropinirole ( 4mg)which I have taken for many years and is a nightmare with augmentation.
This is only day 5 but I'd like to share my experience.
I started on 5mg Methadone nocte orally which I believe equates to 7.5mg due to the long half life.
I was allowed to go to 10mg if I was feeling good.
Instead I have kept at 5mg but reduced ropinirole to 2mg. The result is awesome.
I am getting 12 hours of freedom from RLS and it is a real life changer.
It is early days and I do feel dopey on a morning. I take fybogel and movicol to ward off constipation.
I feel that I may reduce ropinirole further tonight and slightly increase methadone.
I'll let you know

Welcome. How wonderful that this is working so well for you Halved your ropinerole and feeling so positive.
The dopey morning feeling is likely to fade after a while.
There are different points of view regarding how quickly or slowly the ropinrole should be reduced - it will be very interesting to hear how you are getting on, please keep us informed.
Well done.

I agree that it is great that you are improving as you get off of ropinirole and YES, please keep us informed. I ask that as from a rather selfish standpoint in that I am hoping to make the same change in the next couple of months in order to get off of pramipexole. It would be great to have a success story to use when I have the discussion with my doctor.

Ronofold - are you planning on staying on methadone indefinitely, or are you just using it to get off Ropinirole? If the latter, please also share your experience in tapering off methadone, once the Ropinirole is out of your system. Some RLS experts believe opioids simply delay the inevitable and you will experience withdrawal symptoms when coming off methadone, similar to what you would have experienced coming off Ropinirole had you done it without the opioid, so I am curious (as I'm sure others are) what your experience will be, if that is your plan. Good luck, and I hope things continue to go smoothly for you.

I stopped taking Mirapex (a similar drug), five years ago. I have been taking Methadone ever since. I take 5 mg tabs, and divide it into two or three times during the night, depending on how my legs are. I have no problems.
At first I had nausea, but that went away.
I wouldn't go back to the other drug in a million years.
I am very strict with myself. I never increase the dose. I add other things when it's really bad, which is very seldom.

Some RLS experts believe opioids simply delay the inevitable and you will experience withdrawal symptoms when coming off methadone, similar to what you would have experienced coming off Ropinirole had you done it without the opioid

I've been seeing this type of thing here lately and I wonder where it comes from. Is it coming from the real experts who have treated multitudes of augmenting patients, or from other people who may not be as expert? I haven't kept up with the literature, I must admit. Nevertheless, I don't see how it's possible to delay the withdrawal. The opioid treats the symptoms while the DA receptors are re-establishing their baseline density, so that when you stop the opioid, the DA receptors are all cool and everything is good. Primitive view and probably wrong, but I'd like to know if there's actual evidence that delayed withdrawal happens, or has something been misinterpreted?

I doubt it would be necessary to taper off the methadone. Withdrawing from an opioid after a couple of weeks is not an issue for most people, though rarely someone will have problems.

Beth, I heard one of the Foundation webinars that was presented by Dr Early. I think that it was during his presentation of augmentation that he stated that his approach was to go without opiods because that just delayed the ultimate withdrawal problems. From my standpoint, I agree that I do not want to face getting off of DAs without help from a opiod, especially if the next step in treatment is going to be an opiod as opposed to an alpha-2-delta med. But there have been plenty of his patients who went through the experience and believe that they are better off now.

So, at least one of those experts is Dr Early.

Rustsmith wrote:I heard one of the Foundation webinars that was presented by Dr Early.

Yes, that is where I heard it as well. It is Dr. Earley's and Dr. Allen's theory. That is why they advocate the 10-day/no coverage drug holiday. My own uneducated/oversimplified theory is that opioids flood the brain with dopamine, which then bombards the dopamine receptors so they are unable to properly reset. When you go off the opioid, the dopamine levels drop drastically, causing the receptors to go haywire, hence the withdrawal symptoms. There was a discussion about this in another topic. I believe some internet research was cited along these lines, about how opioids affects the brain and dopamine. If you search "opioid" and "dopamine" you should find the topic.

I would love to hear from folks that have successfully used opioids to get off a DA, then later tapered off the opioid, to see if this actually happened. Drs. E & A cite clinical experience, but I have yet to read about it on this board from one of our fellow members. I'm guessing most folks that use opioids to get off DA's stay on the opioid long-term, which would effectively make this a moot point for them.

I'm going through Mirapex withdrawal using Lyrica, and it's definitely better than no coverage at all, so I'm curious why Drs. E & A don't at a minimum advocate using an alpha-2-delta ligand to help us through this. To me, no coverage is just crazy, based on personal experience and everything I've read on this board. They never indicated that withdrawal symptoms are delayed using this class of drugs, just opioids, and I don't believe they affect the dopamine receptors at all, so to me (again, my uneducated/oversimplified opinion), it just makes sense to use this class of drugs first, then go the opioid route. Based on my own experience, it seems if you want to go the fast/furious route to get off a DA, then use an opioid. If you're willing to be patient and taper very slowly off the DA and can handle the sleep deprivation and barely tolerable withdrawal symptoms, then the alpha-2-delta ligand option is the way to go.

I was lucky enough to get a nurse practitioner who worked with Dr. Allen. She used percocet and neurontin to help me taper off 3-4 mg Ropinirole (this was back when 4 mg was "ok" per FDA). I found weight gain on neurontin to be unbearable so I switched to just percocet (10-15mg/day) in 2011. Also tried iron infusion due to low ferritin but that didn't help me. Last February, I switched to methadone because 15mg of Percocet wasn't covering symptoms. I am now, like Debbluebird, fanatical about not increasing my methadone dose. I am NOT going to blow this. I use hot water bottle, massage, baths, and gentle exercise when I have breakthru symptoms, maybe once a week.

Ronofold, I hope your journey continues to be successful!! That dang Ropinirole, what a nightmare that was...it was my best friend in the beginning and my worst enemy by the end!

Joanie

I got off of Mirapex in July. After a ten day drug free period I went on Gabapentin. Now am having depression issues with Gabapentin and have begun to taper off of that. I believe the next course of action maybe Methadone. Has anyone had depression issues on Methadone? Sounds like those who have used it on long term basis have had fairly good success.

Jaybird8-

No depression issues for me. I did have nausea for first week or two. It wasn't bad and it does go away

Jaybird - congratulations on tapering from Mirapex. I regret to tell you depression is in fact a side-effect of methadone. I took neurontin (gabapentin) for many years and never had a problem with it causing what I thought was depression. In fact you can take a very large dose of gabapentin (ie 3000mg daily) with relatively little risk, according to a previous neurologist. I took this much when attempting to taper from Mirapex many years ago, but I took 1200mg for many years prior for neuropathy. - Unfortunately, I believe that methadone has in fact increased my depressive symptoms.
In response to previous questions about tapering from opioids - I attempted a drug holiday in late October and was only able to tolerate 48hrs. The withdrawal sx were extreme. I could make the distinction between methadone withdrawal and RLS symptoms (including PLMD). Or, is it possible to distinguish, with certainty, the withdrawal from the RLS? I believe the RLS symptoms were far worse than the methadone withdrawal. It was no different than the many times I attempted to titrate from 1mg mirapex, many, many, many times. In a word - agony.

Jusdt goes to show how different our brain chemistry can be. If anything, methadone is the best mood moderator I've used. It never makes me too happy, just normal. I feel like I used to before all of this started.