I have been on 2mg er ropinerole for 10+ years - up and down on doses; mixed with a variety of other low dose meds; became 'refractory' a while ago - my RLS is advanced and has been so for 15+ years.
I retired 2 years ago and decided it is time to finally be liberated from the evil 'R". ... I have begun to augment again. Scary stuff.
I am in the process of transitioning to 100% low dose Methadone (from 2mg er ropinerole/5mg Methadone).
My doc. tells me I should not experience heavy Ropinerole withdraw, which I do not quite believe. He is recommending I 'transition dose' immediately at 20mg Methadone (5mg every 6 hours); and because I am at the lowest ER level - to stop the Ropinerole cold turkey.
And while I understand the transition process, I have a number of questions about this and cannot find any info in the RLS literature answering these.
1. What does Ropinerole withdraw actually feel like?
2. How do I know I am through withdraw?
3. Will 10-20mg daily Methadone dosing actually be able to manage most of my RLS ongoing symptoms?
It has now been 48 hours without Ropinerole and I experienced itchy skin which drove me a bit crazy; headaches. This seems to have subsided today. IS this IT? Or what should I expect?
HOWEVER, even with the relatively high Methadone dosing - when I lay down to sleep the first two nights, my legs tremble, cramp and dance most of the night - keeping me brutally awake. All night. The Methadone masks the insanely uncomfortable RLS tingling and burning symptoms (yeah!) BUT after around 5.5 hours, I have to dose or go crazy.
Does anyone have enough experience with methadone to answer these questions?
1. Is this just transitional period? Will my leg trembling, cramping actually go away with Methadone? Or is something else going on?
2. Does Methadone only deal with the 'pain' symptoms; and not the trembling/cramping/jerking? Or do I have to be on another additional RLS med to manage these particular symptoms?
HELP!
Written by
Steino
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Wow. Going cold turkey is not usually advised because you can get acute withdrawal symptoms as a result which I believe is what you are experiencing. Normally it is advised to reduce by .25 mg every 2 weeks. Personally I would advised you to go back on ropinirole and reduce more slowly. Then the methadone should cover your withdrawal symptoms.
I'm also surprised your doctor put you on 20 mg methadone. According to the Mayo Clinic Updated Algorithm on RLS the usual effective dose is 5 to 20 mg. And you shouldn't need any other RLS medicine and very likely after things settle down will be able to lower your dose.
Is your doctor by any chance Dr Buchfuher?
Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before and fast after midnight and 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. 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 some advice.
I second Sue. You only stopped the ropinerole very recently and have a good chance of experiencing much worse withdrawal symptoms soon. And they will last a while. Up to months. Based on common experiences of people on this forum.
I also agree with Sue that -therefore- it may be wise to restart the ropinerole and reduced slowly and in small steps. That can lessen withdrawal symptoms markedly. Very important: you will have to switch to ‘normal’ ropinerole (not ER), to be able to reduce. Talk to your doctor and let her/him prescribe smaller amounts of ropinerole (it comes in 2mg, 1mg, 0.5mg and 0.25mg tablets). Do not take yoyr next reduction until (increased) symptoms have more or less stabilised for at least a few days. To go low, go slow is the rule of thumb.
And indeed, 20mg methadone is a relatively high dose for RLS. You may not need that. When you withdraw far more slowly from the ropinerole, you most likely will experience that you will need far less. Maybe 2.5 or 5 mg daily only. You may need more only during the last stages of the ropinerole withdrawal and the first days (weeks) after you last ropinerole dose.
Do some reading on this forum, as you are not the first to make this transition from ropinerole to methadone. You’ll see how ot works out for most and learn about the different journeys. Good luck!
Thanks Sue and Lotte, You are echoing my concerns. I do track with all the algorithms/research/reports etc so am up to date. And am concerned enough about my doc's approach to seek your advice We just moved to Idaho and he was referred to me recently and can prescribe low dose methadone for RLS - a rare commodity these days.
Dr. B is not my doc. I was planning on reaching out to him next week as a second opinion. Do you advise I do so?
My ferritin/iron levels are within range. I checked these in June.
Thanks Lotte for suggesting I break loose from Ropinerole ER. I have been through this before - started at 6mg ER believe it or not - a few years back. So I know how hard this is.
I will do a reset today (Saturday) - with 2mg ER Ropinerole; cross fingers I didn't do any damage. The last Ropinerole I had was 2pm Thursday, so I missed one dose. I will back it up with 5-10MG Methadone, as I have been doing for a few years.
It will take a bunch of days to get a second opinion and recalibrate my approach. You hope you all know how invaluable you are!
Methadone and Buprenorphine can reduce severe Ropinirole withdrawal for some people, but not all. Ropinirole is a brain altering chemical, so any withdrawal should be done slowly to allow your brain to adjust.Standard Ropinirole withdrawal symptoms are SEVERE, all over RLS, violent leg jerks, total inability to stay still for DAYS.
So take SueJohnson and Lotte advice. Go back to 1mg Ropinirole and reduce by 0.25mg every 2 weeks.
You may then be able to reduce the Methadone dose about a month after yoor last dose of Ropinirole.
The reason I thought Dr Buchfuhrer might be your doctor is he often believes in stopping cold turkey and adding methadone so no advantage in contacting him.
You say your ferritin is in range but what is normal for others is not normal for those of us with RLS. Do you know what your ferritin is?
Hi Stenio, You received spot on recommendations from the above members. I agree 100% with their suggestions. I have been on methadone for about 3years. To answer your last two questions; Those trembling cramping sensations you referred to should indeed diminish with 20 mg of methadone. I have been on 10 mg for about 2 years. As the days pass, let us know how you are doing.
I agree with the advice given above. I had a horrendous withdrawal by going cold turkey. I also feel that 20 mg is very high to start with. Although you may well be different to me, I felt very ill on methadone to start with even at 5 mg. I am now on 10 mg.
Thinking of you tonight ( I’m just going to bed in nz). I wish you all the very best for a not too difficult withdrawal.
Hi again Steino, for me, withdrawal from DAs felt like RLS in its most extreme form . Meaning 24 hours a day, whole body, at times violent moments. on the forth day of zero sleep I began to micro sleep, where my brain shut down for milliseconds at a time. I banged into walls, tables, chairs , anything in my way. My husband gave me a bike helmet to wear to protect my head. Bruises all over my body. I would curl into a ball and cry, then violently kick out. I could only lay down for seconds at a time. On the fifth day I began to hallucinate. My eyes were so tired and sore that I would shut one eye at a time to rest it. I looked trrrible, stumbling around the house. I fell off a chair. I fell off the toilet. I didn’t know how I was going to get through the next 5 minutes let alone the whole night.
On the fifth or sixth day I started to sleep - just a few minutes at a time to start with. Then 5 minutes, then 10, and very slowly and gradually I started to recover. I got to drs, who prescribed gabapentin and codeine. I slept for 2-3 hours at a time. More codeine, another 2-3 hours sleep.
I did not know someone could exist for so long without sleep.
I'm on 7.5mg methadone, started 6 months ago. Had never been on DA'S though. The methadone takes care of the RL movements for me with a breakthrough night a couple of times a week. So much better than it was as I can often sleep 6 to 7 hrs with only a minor breakthrough. I never had painful RL, it was always about of extreme irritation and tension in my lower legs and so the need to move them.
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