I’ve been weaning off Ropinirole for at least a month and last week I reduced from 1mg to .75mg. The reduction from 2mg to 1mg was fine.
I have been awakened each night with the most vicious RLS I have had in twenty years. Both of my legs are jerking, twitching and completely living a life of their own. The need to violently move them is constant for two to three hours. I’ve never known RLS to involve the entire lower part of my body with both extremities synchronized, jerking and twitching together.
I’ve been on 900mg Gabapentin for two months. I can’t tell if it’s working while I’m in the process of weaning off the Ropinirole. Is this an extreme reaction to lowering the dose .25mg? It’s been a week of hell and I don’t think I can go through two more reductions.
Has anyone experienced this “lower body” involvement from a slow withdrawal of a DA? I’m wondering if it could be some other type of sleep disorder. The odd thing is I’m able to initially go to sleep, but am awakened hours later by this violent jerking. Does anyone have experience with a sleep disorder or other disease process that mimics this behavior? I’m not even sure it’s RLS at this point. Any information would be greatly appreciated.
Thanks so much everyone and please stay safe.
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Nlthomp
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That does sound like withdrawals, which as you've figured out are not easy. I'm glad that you've managed to come down on the doses but from here on, you'll most likely need an opioid to get through. Tramadol is the widely used one but as I am finding out it is not potent enough to get you through Dopamine agonist withdrawals. We need something stronger like Oxycodone or Methadone to get through the withdrawals. Perhaps, you could try slowing down further on get off them. Let your body settle on a dose for a while, have some rest and then continue.
Others will likely chime in. I'm interested in hearing what they have to say.
Thank you so much for responding. I’ve never experienced anything like this. It’s almost as if I’m having seizures, but I’m awake! I will reach out to my doctor, but here in the US, it’s almost impossible to get a prescription for an opioid. I’m very lucky to have Tramadol, but as you said, it isn’t enough. I’m not sure I can do this. It’s absolute hell, but I’ll try to cut the pills in half. We’ll see, but honestly I’m feeling hopeless, exhausted and not sure it’s even worth trying.
It is always the final drops down that cause the real trouble.
As she says, some form of opiate is desirable for the last while, otherwise it will be tough.
But keep in mind, that you will get through this episode.
I came off Fentanyl 70 and it took me 18 months to finally get it down to zero. With a lot of holidays from tapering down-- I like to call them plateaus!!😊
I used clonidine and valium just for the final week. But there are other medications that can also help with rhat final spell.
The main thing is to go down as slowly as possible, and by as small doses as possible , let your body get used to the new situation each time.
Give yourself a reward each time you successfully go down.
You could try taking paracetamol at night-- I don't really know if it will help or if you personally are able to take it, but certainly worth a try.
I’m not sure if I am strong enough to do this, but your suggestions are appreciated. I’ll try taking the acetaminophen tonight and cut the Ropinirole in half. You must be a very strong and determined person to have weaned off Fentanyl! Congratulations!! I wish I had a physician who was helpful or knowledgeable, but her response was to refer me for a sleep study and no Oxycodone. Well, it’s daytime now, so I won’t have to deal with it for another ten hours. Yippee!! Take care of yourself and thank you once again 😊
Nithom, if your doctor will mot prescribe an opioid during this horrible phase of withdrawal, would you consider kratom? In some states it is legal. Make sure you get a reliable supplier with an independent quality assessment. I have recently bought some to help me through difficult times - but by far not as bad as your DA withdrawal - as I am trying to switch from oxycodon slow release to pregabalin.
Thanks so much Lotte. I was able to speak to Dr. Glen Brooks in NY, and he prescribed buprenorphine to help me get through this withdrawal. I am grateful to you for responding and will definitely keep your suggestion in mind. Best of luck to you with your switchover to Pregabalin. I hope it works for you 😊
Just to reassure you that it is far easier to reduce from a large to a lesser dose of a dopamine agonist than it is to reduce from a low dose to an even lower dose, i.e. the lower the dose gets, the harder it is to reduce.
Yes, it’s truly a miracle that Dr. Brooks was willing to help me with this over the phone. He is the most understanding, knowledgeable and caring physician I have ever met. I will be flying to NY to see him as soon as I can.
You are so correct about the weaning process. I thought it wouldn’t be a problem, as I was able to reduce from 2mg to 1mg without any side effects.
This final reduction is insane. The spasms, jerking and twitching is out of control. It feels like someone had taken over your body. I hope I can get off this DA with the help of buprenorphine. It’s literally ruining my life.
Thanks for your response. Be safe and stay well. 🙏🏼
Well done nltjomp, I hope the buprenorphine works for you. Will you let is now soon, but also after a few weeks and months?
And so far (2 weeks) little luck with pregabalin, it cannot yet (?) cover the increased restlessness due to the reduction in oxycodon from 10 to 7.5mg. I'll try a little longer and also have to increase the pregabalin dose (now 50mg) further, but slowly.
Hi Lotte. I wish you luck with the Pregabalin. I thought Gabapentin would ease my withdrawal from Ropinirole, but it did nothing. It sounds like we’re in a similar predicament
I’ll most certainly let you know if the buprenorphine helps. I’m starting at a minimal dose, so it may not be strong enough. Dr. Brooks said to let him know... so I will call him to follow up.
Great advice from everyone here. It’s the only support I’ve gotten. By regular physician refuses to acknowledge RLS as an actual disease. When will this ever change? 😩
Remember that it is difficult to assess the effectiveness of gabapentin while you're still going through withdrawal, as is your situation right now. It may work, but the withdrawal may 'overrule' it. Maybe you can try the gabapentin again after you have stopped the ropinirole completely and withdrawal effects have eased.
Keep it up for now. Withdrawal from a DA generally is and will be difficult, but I hope very much that the buprenorphine will help. I took tramadol during withdrawal and that did the job for me. But I had been on a much lower dose (0.75mg) for less than a year.
If the buprenorphine works, remember to try to reduce your dose after you have completely weaned off the ropinirole and the increased RLS as a result of that has settled. It is always advisable to find your lowest effective dose.
Just to add that not only might your withdrawal symptoms be masking the effectiveness of the gabapentin, but it may be that 900 isn't an effective dose for you. It is for many people, but perhaps not for you.
That may be true. Unfortunately, my physician won’t increase the Gabapentin because I’m on buprenorphine. We’ll see how that works out. Thanks for your reply 😊
Brilliant- buprenorphine is one of the best opioids for RLS - read Shumbah’s posts. Her RLS is completely under control now. Sadly they won’t prescribe it here in England or Methadone even though all the experts regard them as the best, safest RLS treatment.
You should now be able to get off the dopamine agonist safely ( but still go slowly) and hopefully your doctor will continue to prescribe Buprenorphine.
Thanks for the good wishes, Joolsg. I wish this medication was available for you in the UK. It’s strange that we can get a Rx for Buprenorphine, but not Oxycodone! The system is ridiculous and finding a doctor that understands RLS is nearly impossible. I’m so lucky to have seen Shumbah mention Dr. Brooks on this forum. He is brilliant, kind and compassionate. All the best to you. Be well 😊
It’s definitely withdrawal. I had constant jerking and twitching every 10 seconds and 20-30 mins sleep every 24 hours during the worst of it. Cannabis was the only thing that helped.
The longer you’ve been on DAs, the more extreme the withdrawal.
It lasted 10-14 days after the last dose and it took about 3 months to find the right combination of meds for me.
Stay strong because once you’re through withdrawal the severity of RLS will lessen and you should find you only get it at night. Hopefully, you may find the right dose of meds completely controls it.
Hi Joolsg, It seems like everyone that has gone through this recognizes the symptoms. I don’t think it’s something that’s easily forgotten! I started Buprenorphine last night and had a very long, nauseated and uncomfortable night. But, my legs didn’t move an inch lol! I’ve been in touch with Dr. Brooks, who is incredible btw, and we’re going to cut back a bit to start out. I’m not sure whether I’ll stay on it just to get past the withdrawal or whether it will be a permanent fix. It seems like a good option for me if the RLS continues.
Thanks for sharing your knowledge. It’s greatly appreciated. Stay safe 😊
Just an update, as promised. I was unable to tolerate buprenorphine, so my course of treatment has changed.
Unfortunately, I was so sick, day and night, that I was unable to function. Even with the lowest possible dose, cutting a 2mg pill into eight pieces, the constant nausea, headache, tremors and chills became unbearable after five days.
Currently, I am taking 75mg of Pregabalin. It’s been a week now and my RLS is under control, without side effects.
According to Dr. Glen Brooks, my reaction to buprenorphine was highly unusual, especially at such a small dose. He said most people are treated successfully with minor discomfort. I believe that is true, and possibly I was just overly sensitive to the medication.
And, so the journey continues....
Thanks for your thoughtful responses. Be safe and stay well
Thanks for the update, Nlthomp. So sorry the buprenorphine didn't work put for you. But very useful that you posted this negative result.
Congratulations that the pregabalin 75mg works for you. I am happy. I take the same amount to try to reduce my oxycodon slow release, but that hasn't been successful yet.
Hi Lotte, thank you for the reply. I’m sorry to hear you are having trouble reducing your oxycodone. After I had knee replacement surgery in 2013, I became dependent on oxycodone. Thinking back now, it makes me laugh, having the surgeon tell me he had never heard of that happening 😂 Of course, it’s a huge and widely known issue following major surgery! Physicians certainly are a special breed 🙄 I had to cut my pills into the tiniest little pebbles and stay on each reduction for a minimum of two weeks. It took a very long time, but it is possible to wean off this way. I’m having a difficult time with Ropinirole reduction and am going to cut my .25mg tablets into halves or quarters and try again.
Don’t give up Lotte. Perseverance is key. Best of luck to you and please keep us posted
Hi Nlthomp, nog that is not the reason I have difficulty reducing. When I reduce - no problems - my legs are not well controlled and I am up 2-3 times a night again, walking around for an hour each time before I can get to bed. And that doesn't settle after more than a week. I need 7.5-10mg of oxy to control my legs sufficiently to get some decent sleep. And the 75 mg of pregabalin doesn't make ip for the reduction of even 2.5mg oxy.
I think I'll revert back to the 10mg oxy and just deal with the tiredness during the day. I have had a stressful time that may well well have added importantly to the tiredness. Time will tell.
Oh, I understand. So, the reduction is so you feel less tired during the day. I guess it’s a trade off then. Personally, I’d rather have my legs somewhat better at any cost. It’s agonizing having to deal with the legs, no less having to get up 2-3 times at night. I’m so sorry to hear you’re dealing with this. Is this always the case, or do you have periods where it is less active?
I assume you live in the UK where buprenorphine is unavailable? Shumbah does very well with it and says her legs are no longer an issue. I hope that it becomes available for you to try in the near future.
You’re not alone in this god-awful battle, Lotte. Please keep us posted.
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