Gabapentin with Ropinirole

[wcp2008]

I have been through 2 different neurologists over the last 10 years, as they keep moving elsewhere. I ended up seeing a PA, who of all things, recommended that I continue with Ropinirole and drink more tonic water! You'd think that she would have read my charts and see that I've been through all the "simple" remedies. Before my next visit, a new Doctor started and I asked for her. What a stroke of luck! She actually KNOWS about RLS and said that she would never have started me on Ropinirole as a first treatment. She placed me on 300mg of Gabapentin each night, with the option to increase to 300mg in the afternoon. I am at day 12 and am definitely getting better sleep. I am very groggy in the morning, but have had no other side effects. She hasn't taken me off the Ropinirole yet. I take 2mg of Ropin. ER at 7pm, 1 mg of regular Ropin at 8pm and then the Gaba at 9pm. I fully intend to get off the Ropin. I would love to hear from those of you, who have been in my situation, to see the steps you took to wean off of your DA? Manerva I know you've been where I am and I would appreciate your comments. Thanks all!

[Hidden]

Hi, I can only tell you my experience of weaning off immediate release Pramipexole of which I took just one dose a day.

It may be different for you taking an ER dopamine agonist, and taking split doses, but I guess there more similarities than differences.

As regards the Gabapentin, you may find 300mg insufficient. You can build it up in steps of 100mg, but I'd say with doses up to 600mg a day, (you may need more) you can take it all at once, no need to split the dose.

For doses above 600mg, it's optional, but you could split the dose, 1/3 about midday and 2/3 in the evening. (e.g. 300mg midday and 600mg evening). This is recommended in a recent article.

uptodate.com/contents/treat...

It partly depends on how groggy you feel next day. However, I found some of the grogginess I felt when I started on it, wore off after a few weeks. Additionally, the grogginess may reduce as you reduce the ropinirole.

The other reason for splitting the dose is because of the absorption characteristics of the drug and you can actually absorb more of what you take if you split the total dose rather than taking it all at once. For RLS however, it's best to have the larger part of it in the evening. For better absorption, you only really need to separate doses by about 3 hours.

Incidentally, Pregabalin is absorbed much better than gabapentin.

It might be a good idea to try the gabapentin for a few weeks and be getting an effective dose, before reducing the Ropinirole.

With reducing a dopamine agonist, I reduced it in very small steps, which involved cutting the tablets. There was a practical restriction on this as since the smallest dose tablets are so small, it's quite difficult to cut them in any less than halves

I reduced the dose every 4 weeks, but that is probably unnecessarily slow. You may just have to try and see how fast suits you. What can happen is that when you reduce the dose, RLS symptoms may increase at first then settle again. If they settle again, then that's when to reduce the dose again.

Reducing the dose in any time less than a week is likely to be too fast.

It's true that we are all different, I can only say that whereas a lot of people find it hell to wean off a dopamine agonist and some find an opiate or a benzodiazepine help with withdrawal effects, I just found that as I reduced the Pramipexole, my augmentation faded and RLS symptoms virtually disappeared.

I don't know why, apparently, I've been so lucky. I sometimes wonder if I ever really had RLS at all, but still have quite vivid memories of daily severe insomnia and violently twitching for hours on end.

You might not be so lucky, but if you first ensure you're getting a sufficient dose of gabapentin (say 900mg) then reduce the ropinirole in as small an amount as you can manage, as slowly as you can bear, it should be significantly better than if you aren't taking enough gabapentin and/or you reduce the ropinirole too much, too fast.

[wcp2008 in reply to Hidden]

I am totally “in” when it comes to reducing the dose in as small amounts as possible, as slowly as possible. My hope would be to barely notice as I do it. I haven’t been on the Gabapentin long enough to even know how well it works, other than making me tired at bedtime and groggy in the morning. The doctor did say the effects would lessen with time. I am definitely getting more sleep, but what I assume is augmentation, has me standing and watching tv for a short time in the evening before the Ropinirole kicks in . However, it seems lessened maybe by taking the Gabapentin. The doctor did say she could put me on an earlier dose as well. I opted for the least as a beginning. Thank you for always being here for the rest of us. I’ll be back!

[Joolsg]

I think I reduced Ropinirole too quickly. I was on 2.5mg of normal Ropinirole and I reduced by 0.5 mg every 10 days. I had been on it for 15 years.

I had an horrendous withdrawal- I wouldn’t have made it without the help and encouragement of people on here and my husband staying up with me all night massaging my legs until I keeled over.

I took tramadol every 4 hours during the worst nights and used illegal cannabis to get an hour’s sleep a night.

I started Gabapentin about 2 weeks before I stopped Ropinirole and took 900mg at night only. I continued tramadol 50mg and Gabapentin 900 mg at night for about 3 months but they didn’t really help at all.

As soon as my neurologist told my doctor to prescribe OxyContin and pregabalin, I started to get some good night’s sleep.

It’s a matter of trial and error to find the right combination of meds and the correct dose to control your RLS once off Ropinirole.

Definitely get your full blood count taken- raising serum ferritin above 100 and serum iron above 60 seems to alleviate some augmentation symptoms and , for 50% of sufferers, helps settle RLS completely.

Good luck getting off Ropinirole and let us know how it goes.

[wcp2008 in reply to Joolsg]

First and foremost...you are right about the support received here and of course from my own family. When the doctor and I believe I’m ready to begin reducing my Ropinirole dose, I will heed your’s and Manerva’s words. Slowly and a little at a time. The option of opioids and marijuana are not there for me presently, as I work at a prison and would have to pass a drug test, if required to. Opioids that help many get a bad wrap, because of those who don’t take care in the use of them. I have always opted for the least, when it comes to meds(little did I know what a large dose my Ropinirole had actually become)! But, I am not at all against whatever helps me sleep. Others really have no idea how frustrating it is to be so tired you could drop, but once you do...well you know what I mean! I do need to have my iron a ferritin levels checked. I’ve been on an iron supplement for about 5 months, but haven’t had the levels checked since before I started. I thank you for your time and most certainly will be back in touch. Hoping to get the neuroma in my foot taken care of, which I have mentioned before. This I believe exacerbates the RLS in my right leg. Money and time make it difficult to consider being off my feet for any length of time...let alone concern of RLS being a problem. But, there is likely to be painkillers involved in the short term! Thanks again Jools!

[Joolsg in reply to wcp2008]

Make sure you time the withdrawal so you have 2 weeks off work after you drop the last dose because you will get very little sleep. I wish you strength. It’s tough but possible. It’s a shame you won’t be able to take Tramadol or cannabis but it would be impossible given your job.

Best of luck.

[wcp2008 in reply to Joolsg]

I do expect to retire in 2.5 years, so I may have to deal with what comes my way until then. Maybe RLS will be better recognized by the medical community and opioids or something else will be an option. I will definitely try backing off of the Ropinirole by quarter pills, until I'm only taking the ER. I don't think those can be cut, but maybe there's a lower dose than 2mg available. Time is all we have, where RLS is involved! Sleep well! My friend!

[Franklin123]

Hi - interested to know what Ropin ER is? I am gradually raising my iron levels - thats ferritin. It seems the brain of a rls sufferer needs more iron. I have always been anaemic, through my life, and realise now that the answer is to get the iron levels up. Most doctors do not realise the need for this and therefore still prescribe the Ropinirole. I had a bad time a few months ago and decided to ask for an `increase in ropinirole` because I thought a stress free and pain free life would be better than the feeling of hopelessness. The neurologist came back with pregabalin, which I could not take - tried for about a month. So decided to take matters in my own hands and now take a good quality iron late at night. Dr Buchfurher is the man to follow. I have also reduced my Ropinirole by 05mg. but do take Solpadol to supplement. My ropinirole is now 1mg a day before dinner. I am in less pain and my rls is definitely lessened. Good luck.

[wcp2008 in reply to Franklin123]

Ropinirole Er is an extended release form of delivering the med. It is much slower to act, yet longer acting. I think the doctor who prescribed it, believed it would help throughout the night, which it probably did at first. But, that along with the regular tab of the same med is a higher dose than I should be taking and I deal with a mild form of augmentation. I get the RLS symptoms earlier in the afternoon and feel it in my shoulders and arms sometimes. I would like to find a kinder form of iron as I don’t like the side effects of the ferrous sulfate I am taking. Must get my levels checked again. I hope to see Dr Buchfurer some day, if my new Dr doesn’t work out. I am only about 4 hours away from Johns- Hopkins, so it may just happen. I’m glad to know that you have less pain and symptoms from the RLS. I wish you luck also...thank you for your time and input!

[Franklin123 in reply to wcp2008]

It is good to know sometimes that someone understands. Take care.