I have been weaning off Ropinerole for a while now.
I am down from 4mg per day to .5 mg per day. However I when I try to come off or even try .25 mg, my legs always start up.
My neurologist reckons my RLS is secondary due to a spinal tumour I have.
When I get an attack, my left leg feels it has a tight belt round it, causing severe pain
I am taking 2 x 300 mg of gabapentine three times a day, but cannot do without that .5 of Ropinerole
Congratulations on getting down as far as you have! Try reducing in smaller amounts and taking more time between reductions. If you don't have .25 mg tablets ask for a prescription for them since you will need to cut them into a smaller size. ) Wait till the increased symptoms settle before making the next reduction. Ask your doctor for a low dose opioid temporarily to help with your symptoms and if you are not having symptoms during the day, take all your gabapentin at night (600 mg 1 to 2 hours before bed, 600 mg 4 hours before bed and 600 mg 6 hours before bed as it is not well absorbed above 600 mg) Hang in there. You can do it.
Well done on getting down to 0.5mg. I think your neurologist is right about the spinal tumour causing RLS as anything affecting the spine seems to trigger RLS. Are you on any meds for pain caused by the tumour as they should help you through withdrawal.?Unfortunately, most people will have severe withdrawal symptoms when they drop the last dose of Ropinirole. Very few manage to avoid it. Experts compare it to heroin or crack cocaine withdrawal.
It's something you have to get through.
The experts set out what to expect in the 2 weeks after the last dose and it reflects what I experienced.
After the last dose, I had zero sleep and constant, all over, severe RLS 24/7. It was really horrendous and the only thing that kept me going was knowing others had done it and that the RLS would start to settle after the first 4 days.
It did settle and I'm so glad I stuck with it as, once off Ropinirole, the intensity of the RLS reduced and had gone from my arms, back and face.
I used tramadol every 4 hours during that 2 weeks period but it didn't seem to help much.
I did use illegal cannabis at the time, as I was so desperate and severely sleep deprived and it helped by giving me 30 minutes sleep. Cannabis is now legal in the UK and you pay privately for a prescription. It may be worth applying through an online private cannabis clinic so you have some to help through that last 2 weeks.
As Sue advises, you may need an opioid as well, to get you through that last withdrawal stage. Tramadol or Oxycodone should help. Ask your neurologist or GP.
It is definitely worth sticking with it.
You will notice the difference once you're off Ropinirole.
As Sue advises, Gabapentin is best taken at night usually for RLS, but during withdrawal, the RLS is pretty much constant day and night.
I wish you strength.
I have now been off ropinirole for over 3 weeks and still have severe pain. From 8 mg down to .5 when Dr. B advised to stop entirely. The doctor prescribed Hydrocodone which did not help, then prescribed Methadone which made me sick. Today I started Percocet but still have severe night pain which keeps me from sleeping. I only get a couple of interrupted hours of sleep each night . I may get an hour or so napping during the day. How long might this pain last at night as it has been over 3 weeks without the ropinirole?
It can take months for the withdrawals to settle. Methadone would cover your severe pain and withdrawals but nausea is a common side effect.I started a similar drug (Buprenorphine) in July 2021 and was bedridden with nausea and vomiting for a week. I was about to give it up as I couldn't eat and was so miserable. However, it COMPLETELY stopped my RLS and I was sleeping 8 hours for the first time in over a decade.
So, I started to use my medical cannabis oil (20% THC) just at night and it stopped the nausea. After 10 days, I stopped the cannabis and the nausea was gone. My neurologist had agreed to prescribe Zofran, a hospital prescribed med in the UK, that stops nausea but side effects looked scary.
So, if I were you, I'd reconsider methadone and ask for an RLS safe anti nausea med like Zofran or get some cannabis. Chemo patients use cannabis to stop nausea.
I wasted 5 years on Oxycontin and pregabalin after withdrawal from Ropinirole and they didn't help much at all. I still had 2 hours of severe RLS in the evenings and was woken 3 or 4 times a night with RLS.
Buprenorphine has given me 18 months completely free of RLS, night or day and 8 hour's sleep every night.
You could wait a few months to see if low dose percocet or hydrocodone or pregabalin work, but I think you could try methadone again with cannabis or Zofran to stop the nausea.
Thanks for your reply. I was so very sick with the methadone that I don't think I could go there again. I was vomiting and lost 10 pounds in a week but no sleep. Last night with the Percocet I sleep for two hours straight.
I understand. I had a terrible week of nausea and vomiting but it did settle. If you still had RLS on the methadone as well as nausea, it makes sense to try the other meds.
Look at the Mayo algorithm. The 2 classes of drugs left to you are low dose opioids like codeine, hydrocodone, tramadol and oxycontin or the alpha2Delta ligands- pregabalin, gabapentin and Horizant (US only). I'm not familiar with Percocet as it isn't available here but it seems to contain paracetamol as well as oxycodone so be careful with long term use as paracetamol can affect the liver..Sometimes a combination of both at low dose works better than one at a higher dose. I hope you find a combination of meds that helps but give it time as the withdrawal from high dose ropinirole can take a few months.
Make sure your iron levels are above recommended levels.
I have been where you are Scottie99. That last little bit is the hardest. Good news is I was finally able to get off it completely but it took a long time. You must go VERY slowly from here. My doctor, who is a RLS specialist, advised me to shave the pills down little by little. The reason my doctor told me is that Requip has damaged the dopamine receptors in your brain. I was taking a tiny little sliver of a pill in the end. Then I tapered off by taking it every other day for a month followed by every 2 days then every 3 days. Go slow! You’ve come too far to turn back now. Also, you need to take something during the transition. For me that drug was Lyrica. Gabapentin and Lyrica cause me terrible side effects. But I only had to take them until I was able to get off Requip completely.
It took me a year to stop 0.5mg of Requip. So, please do not give up. Take it slowly. You have come too far to turn back now. Great job!
Hi. Yes, congrats for having a plan and sticking to it. If they won't prescribe an opioid to help you get through, order some red vein kratom powder online (as tea from the netherlands, per Joolsg). It will cut the pain and the rls (within minutes) until you get off the ROP and figure out your long term plan. It has been a lifesaver for many of us. I can find the link, if interested. Hang in there!
Thanks for your kind reply.
Yes, I have some kratom ( red Borneo, I think!) as per kind recommendations on here.
It helps a fair bit, though not completely.
What would we do without the helpful people on this forum?!
I know, right? You are welcome! Yes, 1-2 teaspoons of that should help you, although I have to take it several times per night, depending. Sleep is everything!
Could you please share the link for red vein kratom powder? I am in US, will they let me order? I am getting close (I hope) to stopping Requip. I am down to .5 a day, doing ok during day but night is difficult.
Kraatje.eu. Sorry, I don’t know where they ship to.
It seems like a great company in the US. thedodahman told me about them originally and it is the company I use.
Thanks
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