Tapering Ropinirole - the last stretch

[Hazuki]

I'm so glad for this forum and the others like it. I have a question about the latter stages of tapering ropinirole. First here is a summary of my situation

- 15 years RLS sufferer

-The last 14 years have been on ropinirole

-Over the past 5 years have been going to GP each time my RLS got worse and had my Ropinirole dose increased until i was taking 4g a night

- Started taking kratom 2 years ago to help with Fibromyalgia (didn't know it affected RLS)

- Stopped taking kratom about 6 months ago and my RLS went bananas, haven't had a good night's sleep since

- That's when I first learned about augmentation

- Saw a neurologist who didn't have a clue about RLS and insisted that I try pramiprexole but only made it worse, so bad I was suicidal

- Had to badger my GP on a daily basis until they gave in and prescribed gabapentin

- Have been slowly increasing the dose while decreasing my ropinirole (I have a stash left over from before)

So, I'm now taking 700mg gabapentin and I'm down to 0.25g ropinirole.

Each drop in ropinirole has been utterly horrible but with kratom and cannabis on hand to get through the worst bits I'm almost there.

What can I expect when I drop to 0mg? I'm nervous that the RLS won't improve at all and also expecting the symptoms to be even worse than it's ever been before. Is it really bad and does it last for weeks?

Thank you all and please know that there are lots of people finding great advice and support here!

[Joolsg]

Well done for getting down to 0.25mg. You've been sensible & done it slowly and started to increase gabapentin.I made the mistake of reducing too fast & I didn't start gabapentin before withdrawal so my experience won't necessarily be the same as yours.

Many people seem to manage the last drop very well, with few withdrawal symptoms.

Mine was dreadful and I had 4 or5 days with zero sleep and constant 24/7 intense RLS.

I did find cannabis to be really helpful so recommend you have lots to hand.

Once through the 4 or 5 days, the symptoms started to settle and other meds started to work.

I think you will be fine as you are on gabapentin and have tapered slowly.

It WILL improve. You'll be so glad you got off Ropinirole. I would recommend you return any unused Ropinirole to the pharmacy so you're not tempted to start taking it again.

Good luck.

[SueJohnson]

Congratulations on getting down to .25 g ropinirole. The usual advice is to reduce .25 mg every couple of weeks but now especially as you near the end you will want to reduce by a smaller amount and less frequently. Let the increase in symptoms settle before making a further reduction. Hopefully the kratom will help, but if not you may need a stronger opioid like methadone or Tramadol or buprenorphine. You may very well have increased symptoms for several weeks but then they should reduce and the gabapentin will take over. increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. Most of the side effects of gabapentin or pregabalin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily." If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 and your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

[SueJohnson]

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music and yoga. Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

[BAK524]

I too am tapering off of ropinerole. I have been on 1mg for almost a year. A month ago I experienced obvious augmentation symptoms. I am now at .5 mg. I have experienced increased RLS within a few days of each reduction. Also experiencing more insomnia, increased anxiety, and muscle cramping. I have suboxone to help if things get unbearable. I'm attempting to control my RLS with gabapentin and dipyridomole.

[Hazuki in reply to BAK524]

Good luck to you! My understanding is that the Gabapentin won't have much of an effect until the ropinirole is out your system but it's definitely good to be taking it in advance.

I had my first night with 0mg ropinirole last night and although the insomnia was worse the RLS was actually a little better, also I haven't had much RLS during the day today either which has been a relief. Here's hoping tonight is also not too awful.

Sorry to hear about your increased anxiety. I can totally understand, I'm currently avoiding any and all interactions with other humans as it's just too stressful right now

[Opie__]

I have been down to .25 mg of Ropinirole for about 10 days now. I only took 1 mg a night and .50 mg during the day when augmentation started. I stopped the late afternoon dose about 3 months ago. .I started Gabapentin a couple of months ago for neuropathy but only 300 mg. It really wasn't as hard to give up the extra .25 mg as I thought. I am able to sleep but usually only 2/3 hours at a time. When RL start, I get up and do some housework or exercise and usually can go back to sleep for another 3/4 hours sleep. I am nervous about 0 Ropinirole, should be in 4/5 days. I am now taking 900 mg of Gagapentin but neurologist said he would increase if needed. I would never have know how to make this journey without the folks on this site. Their help has been invaluable to getting this close to being of DA. Good luck

[Hazuki in reply to Opie__]

I completely agree, without the guidance on here and on Reddit I would have surely failed.

I hope you don't suffer too much when you go to 0mg, for me it hasn't really been much different than the last few reductions, hopefully you get a similar or better experience

[Birdland]

For 16 years I took ropinirole and was up to 8mg every night. It too me a long time to slowly reduce and finally stop ropinirole. I found that the worst time was when I reduced to 0. I had horrible symptoms for 4 weeks after dropping to 0. I hadn’t added gabapentin, just a small dose of methadone.

[Hazuki in reply to Birdland]

Wow 8mg is a lot! I'm glad you were able to get off it

[DogBella in reply to Hazuki]

I was also taking 8mg . It has been 4 weeks since my last dose. Still I have no improvement. After the 4weeks did your symptoms just stop or was it a gradual improvement?

[Hazuki]

Thanks for the replies everyone.

I'm on day 3 without ropinirole, the symptoms have been persistent but they haven't got more intense, if anything the RLS is maybe a little better. However I have terrible insomnia on top of the RLS.

Still, I thought it would be worse, I'm generally not an anxious person but preparing to come off completely was really quite worrying

I hope I get to sleep again soon

[SueJohnson in reply to Hazuki]

You might try ativan or ambien for your insomnia.