For those of you who have weaned off ropinerole completely, how long did it take for you to feel like you were at a “baseline” of your RLS? In other words, when it was just tour “natural” symptoms as opposed to a “kickback” from dropping your dose?
I have spent the last few months getting off ropinerol with the help of hydrocodone (10/375, once at night ), but now that doesn’t feel like enough to keep my symptoms consistently in check. I’d prefer 2 doses of hydrocodone daily, as that seems to really do the trick, but I’m guessing that might be out of the question for my neurologist. But I’m also not sure if I am still experiencing rebound from stopping years of ropinerole. It was only been two weeks since I stopped completely.
. Anyway… stories encouraged.
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Newmomma567
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I believe that the knowledgeable rls experts such as DrBuchfuhrer and the Johns Hopkins Dept say it takes about 14 days from the last tablet following a well managed, gradual withdrawal.
I’m not sure that this is correct. First, it seems to be very individual generally and secondly these drugs mess with your dopamine receptors and dopamine receptors don’t seem to respond well to being messed with. I suspect it takes them a lot longer to revert to ‘normal’ and I understand that experts now suspect that in some cases permanent damage is caused to the receptors by the d/a.
It took me months (maybe 6 to 8 months) to feel anything like normal but my withdrawal was from a very high dose and was badly managed and I compounded this further by rushing it.
I've never taken ropinirole myself, but I used to take pramipexole, which is a bit more potent than ropinirole. In addition, I never tried for a baseline, I was taking gabapentin before I stopped the pramipexole.
However, I have read that you'd expect withdrawal effects from ropinirole to wear off in ten to 14 days.
Since there's quite a lot of variation between individuals, it could take longer than that.
Strictly speaking "rebound" is defined to occur when an individual dose of a RLS medication has worn off (prematurely) and usually happens in the mornings after taking a dose the night before. Once you've withdrawn from the medication and withdrawal effects have settled then you cannot suffer rebound.
There is a complication since you're taking hydrocodone which as an opioid will be treating your symptoms. Hence, unless you stop taking the hydrocodone, you won't know what your baseline is.
I'm not really sure what help in your circumstances it might be, unless you are considering stopping the hydrocodone. I note that you have had RLS for some years i.e. before pregnancy. If your RLS had started during pregnancy there might be a reason for finding your baseline, but it seems it didn't.
Thanks, Manerva. The hydrocodone was the try and manage symptoms while I come off the ropinerol, from which I suffered augmentation. I tried to take nothing, but it was impossible. I also tried every other RLS drug BEFORE asking to try an opioid, but had no success.
I realize that oxy is stronger than hydrocodone (and without the acetaminophen) but I’m trying to see if I can take as little as possible because of the massive stigma it has here in the states. That, and oxy was not offered as an option for me as “I am too young.” I have had a lot of nights where one did the trick and I was able to get a fill night’s sleep almost without any symptoms. But The last few days have been horrible, and I was trying to figure out what has changed.
It's so angry-making. I was in my 30s when I was first prescribed pramipexole. Since then, courtesy of my rls, I have experienced withdrawal from pramipexole and from a high dose of oxycontin - in each case without proper support. Withdrawal from oxycontin was awful, really awful and the withdrawal symptoms went on for at least 6 weeks after I took the last tablet (I probably made things worse than they needed to be by rushing through it). BUT bad and all as withdrawal from oxycontin was, I would take it any time over withdrawal from pramipexole which was pure torture.
I did think that you were only taking the hyrdrocodone to get you off the ropinirole. It was a good idea and I'm glad your doc was OK with it.
You still won't know what your baseline is, however until you've stopped the hydrocodone.
I also suspect that if you were to find your baseline, the RLS won't have disappeared and you will still need something to help with the symptoms. Generally, speaking the idea of a "two week washout" to see what the baseline is, has been abandoned. It usually means at least two weeks suffering only to find out your RLS is out of control. Then more weeks possibly to get it back under control.
I can't say I have any idea why your symptoms are now getting worse after two weeks. Withdrawal patterns are very variable. I have come across at least one other member whose withdrawal effects don't appear until 10 days after stopping.
For some, withdrawal effects can last longer. At the moment I think it best to wait and see, horrible as it is.
I understand that with the "opioid crisis" that's currently happened doctors are now reluctant to prescribe opioids. The thing is that, that if a particular medicine is well known to be effective for a particular conditiion, PLUS all other options have failed then witholding the medicine is unethical.
Is your doctor offering any alternative that might be effective? If not then they are denying you treatment, full stop.
I appreciate that there is a stigma attached to opioids, there's still a stigma attached to having mental health problems. Does the person who suffers a mental health problem have any choice over it? Is it helpful for somebopdy with a mental health problem to actually deny it, as a lot do, because of the stigma.
You didn't choose to have RLS and if a "stigma" prevents people from getting the treatment they need then it's very wrong.
It's only a personal opinion but this "you're too young to take an opiod" thing that seems to have emerged only recently is a pathetic excuse.
Does this mean that a young person suffering acute pain shouldn't be given an opioid?
The low dose of a potent opioid given for RLS successfully for many younger people is not the same as being given potent opioids at the "end of life". End of life doesn't necessarily mean being old in any event.
How do youy know you're going to live long enough to be old enough?
The argument used to be, you don't want to build up a tolerance to opioids because it's possible that when you come to end of life, they won't work. I don't necessarily agree that's true either.
I don't normally try to persuade people to take an opiod for RLS. I don't take one myself ansd would be reluctant to do so, but it seems to me, that for you, it may be the best option.
Just to conclude, if nothing else has happened during the two weeks since you stopped ropinirole, then it's still most likely you are still suffering withdrawals. I am sorry.
Oh, you are preaching to the choir on the “too young” part. It seems completely ridiculous to me too, but here we are. If I were a diabetic, I wouldn’t be denied insulin. It’s just a weird argument.
However. It took me three doctors to get one that even considered the RLS enough of a life-altering condition that she would even entertain the notion of opioids. That, and I went in with a documented history that went back years of me trying every other alternative med in the book. This doc is actually quite sympathetic and has been very willing to work with me because I am compliant, open, and don’t abuse the drugs. She really listens, and has been willing to work with me. I just want to do this with as little drug as possible. I hate the idea of dependency on ANY drug, nevermind one that is nearly impossible to get, but here we are.
About ten years ago I underwent an in-patient rehab for over a week for Xanax withdrawal (I’m not an addict- I had a VERY irresponsible doctor that prescribed an ungodly amount -8mg per day- and I followed the directions for several years having no idea that it was a problem) and I’m pretty sure that, plus about seven years of ropinerol have done some significant damage to my system. (BTW: the ropinerol withdrawal has been ten times worse than the xanax withdrawal, and that one was done in a HOSPITAL, and then at home for about 6 months.)
So. You can understand my reluctance to have to eventually go through any other drug withdrawal ever EVER again. But again… here we are. I now have a child to raise and a Ph.D. To complete. I need to freaking sleep.
It’s good to know (on some level) that the withdrawal symptoms from ropinerol can last a few weeks. That bolsters my confidence that this too might pass.
Thanks, Manerva. I have followed quite a few threads you have responded to on this forum, and I trust your responses. I also appreciate your input. This forum was the critical factor in me pursuing alternative methods to control my RLS.
I just want to wish and send you strength and perseverance. You seem wise and sensible enough, but the challenges can it times simply be too much. I hope you have good support, especially during the more difficult times. I hope you child is doing well and giving you joy. Same for the PhD - what area? Re your work: I find that good distraction helps a lot with dealing with the RLS.
PS Hydrocodone is a "moderately" potent opioid and that's possibly why you're finding one dose is not enough The usual opiod for RLS is oxycodone which I believe is more potent and may in fact only need a low dose.
Buprenorphine is also now becoming more popular and since your doctor has been agreeable to prescribe opiates, maybe a change is possible.
It took me about 4-6 months to get off 2.5mg Ropinirole. I had been on it for over 10 years and withdrawal was horrendous. I suffered from DAWS even though I never had Impulse Control Disorder.It took about 6 months to settle and find a combination of drugs but even now, Istill get RLS every evening for about 2 hours and am awoken at least twice a night.I now take 25mg Oxycontin over 24 hoirs but I clearly need to change meds to get better coverage. That's my next fight, if I ever get to see a GP!
If you don’t mind me asking, what impulses were uncontrollable? I have noticed that when my dose increased and as I went through this withdrawal I have had a BIG problem with eating at night (something I don’t normally do). I have gained quite a bit of weight from it. I’m hoping once this devil drug is out of my system I’ll get back to “normal” and be ASLEEP at night so no snack and loose the weight I gained from pregnancy and RLS night eating.
Luckily I never had Impulse Control Disorder but I did get DAWS. Some experts think you only get DAWS if you previously had ICD but that's clearly not the case as too many people on here report having DAWS without ICD.All DAs can cause ICD and that includes overeating, gambling, alcohol and drug abuse and hypersexuality.
Ropinirole definitely causes overeating and weight gain.
I am on night 48 of being ropinirole free. I still don’t know for sure if I am at my baseline. I was on ropinirole for 16 years and my symptoms are worse now than they were when I took my first dose. But, I can say that I noticed an improvement in symptoms at about night 35. Everyone is different but I definitely didn’t hit my baseline by the 2 week mark. I take 5 mg oxycodone each night. 1/2 at 11:30 pm and the other about 2:30 am. That is barely enough to get me through but I can’t tolerate a higher dose. I am still in the process of evaluating my meds. Good luck.
I very slowly reduced Ropinerole by cutting a tablet into quarters. If I remember rightly I was taking 2 mg a night when augmentation occurred and augmentation was one of the worst experiences of my life. Reducing by the smallest amount possible is very fiddly and not exact! I reduced by a quarter of a tablet every few weeks and I think it must have taken about two-three months to completely stop. It took sometime after the last quarter, to get Ropinerole out if my system.
Fortunately, I have an informed doctor and was prescribed 2 Tramacet at night. Tramacet contains 37.5mg of tramadol, an opioid, and 500 mg of paracetamol. I also take one 50 mg of Pregabalin at night. Gabapentin didn’t suit me at all.
I went from pramipexal to oxicodone 10 mg with out weaning the pramipexal, and I did fine! I have to take the oxy around 6 pm because it hypes me up a bit , but after two months on the 10 mg I was able to go down to 5 mg and I’m doing great!
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