Finally off ropinorole!

[ParisianTN55]

After 7 months I am finally off ropinorole. I started at 10 mg. I am still struggling with withdrawal symptoms. I am taking 600 mg gabapentin. My Dr gave me the option of taking pregabalin but gave me 25 mgs twice daily. I don’t think it’s enough. I think I was better off on gabapentin. I’m having a lot of depression now. I’m also taking 50 mg of Tramadol daily to get me through until symptoms stop. What is the usual time for symptoms to go away now that I’m off ropinorole? Also, a little advice about the need to move when symptoms are bad. I discovered that a rocking chair works as well as walking for me and settles my legs down pretty quick. Thanks for any advice.

[Madlegs1]

For alleviating the fizzies, I find massage good- I use one of those pistol type yokes and give my calves a good going over. 10 mins usually does the trick.

[707twitcher]

As you've probably read here, gabapentin and pregabalin (basically the same drug, but some people respond better to one vs the other) frequently don't work for people who have been on DAs for a while. It's unclear whether this is a permanent situation or if it might change as you are off the DAs for a longer period. Your doctor doesn't seem aware of the gabapentin to pregabalin conversion factor of 6. If you are on 600mg of gabapentin, an equivalent dose of pregabalin would be 100 mg. This is still a very low dose. Many people here take 1800mg or more of gabapentin (300mg of pregabalin). Likewise, 50mg of Tramadol is very low. 100 - 300mg seems to be what most people here take. If your doctor won't prescribe higher doses, I'd suggest finding another, more knowledgeable doctor.

[SueJohnson]

I agree with Twitcher. In effect by switching to pregabalin you cut your dose in half. Also unless you are having symptoms from the withdrawal during the day, take all the pregabalin 1 to 2 hours before bed.

Depression is common coming off ropinirole. It should improve, but you can ask for a prescription of Wellbutrin or trazodone.

Your withdrawal symptoms may last awhile since you came off it faster than usual. Keep using your tramadol and increase it as needed as Twitcher said you are taking a low dose.

[ParisianTN55 in reply to SueJohnson]

Thanks again Sue for your advice.

[Joolsg]

Huge congratulations. 10mg of Ropinirole is mind blowingly high.As others have advised, 600mg gabapentin is too low. Ask your doctor to use rls curbside. Funded by rls.org it enables doctors to seek advice from RLS experts.

The depression is normal. It can take months to settle, as your brain starts to heal.

rlscurbside.org/

[ParisianTN55 in reply to Joolsg]

I have an Rx for gabapentin 100 mg besides the 300 mg so I can increase it some. Hoping it is going to work.

[Joolsg in reply to ParisianTN55]

The average effective dose of gabapentin is 1200-1500mg taken in split 600mg doses 2 hours apart.All set out in the Mayo Clinic Algorithm.

If your doctor won't consider increasing to the average effective dose ask him to use rls. curbside and look at the Mayo algorithm.

And if he still refuses, you will probably need to find a doctor that follows the new research and treatment as set out in Mayo.

[SueJohnson in reply to Joolsg]

Actually Mayo says 1200 to 1800 mg

[Rayme]

hi Parisian, that's great that the rocking chair helps you. It sure beats stumbling around on your feet when you're tired and sleepy. I hadn't thought of it before and might just go buy myself I nice rocking chair! Thanks.

[4inthemorning]

Agree with others comments here, 10 MG is really high dose. I tapered off 4MG 2 years ago and did it in two weeks per Johns Hopkins treatment plan and then two weeks with nothing.

Brutal and the anxiety of coming off ropinirole was beyond difficult, That drug really messes with your mental state.

Then went on low-dose oxycodone in evening which is by far the best for me.

When my legs rarely act up due to a stressor event, I do a yoga pose called legs up the wall ( viparita karani ), again for me, highly effective for many many years now starting the medication switch.

[wildlegs]

I’ve taken 100 mg of Tramadol for ten years now (after a 30 year battle) and it works. I take one tablet at six pm and another at eight pm. After experimenting for awhile this works best for me.

[ParisianTN55 in reply to wildlegs]

It seems to be working for me but my Drs. won’t prescribe it. I have an Rx from a previous injury. My husband also has an Rx that I can use for now. Thanks for the advice.

[rls-insomniac]

I was on the same dose of ropinirole as you. It took me around 18 months to wean myself off this evil drug. I wonder if you came off it too quickly. That said it took my body a long time to recover, around 9 months. It was a horrendous experience, and one I never want to repeat.I tried all the drugs including pregabalin but they didn't work. I think my receptors have been frazzled due to taking such a high dose for so long! In the end I managed to persuade my consultant to trial buprenorphine and after a shaky start, it did help me. It's not perfect and I still get attacks of RLS, but they are less intense. I take 600mcgs. It's really helped me.

I really hope your symptoms settle down soon.

[ParisianTN55 in reply to rls-insomniac]

I have been tapering off for 6 months. I was on 10 mg for about a year after slowly increasing it over 4 years. I tried to taper off slowly but once I got down to 2 mg the taper didn’t seem to be working. I got frustrated and decided to stop when I got to one mg. The Tramadol and gabapentin seem to be working. I’m not sure if the RLS will ever go away but I’m hopeful.

[rls-insomniac]

I can understand your wanting to 'get it over and done with ' but it can be brutal to do it that way for some people. I tapered down fairly quickly in the beginning but took my time once I'd hit 6mgs as it was becoming too difficult for me. So I slowed right down. I'd been on ropinirole for 16 years and had been taking 10mgs for around 8 years. I'm glad that the tramadol and gabapentin seem to be working. Just let your body settle down a bit. It does eventually get better.