Need advice on where to go from here in my attempt to get off Ropinerole. Also welcome thoughts about my theory about how my RLS began.

[Bganim1947]

I take Gabapentin 600 mgs. morning and late afternoon, when I take my daily dose of Ropinerole 2mg. Extended Release. I find my regular Gabapentin to be helpful for nerve pain from a botched foot operation 12-years ago. I also take 100 mgs of Tramadol at that time and 1 or 2, 28 mg. capsules of Iron Bisglycinate w/OJ. This works pretty well unless I'm overtired or emotionally stressed.

I have been slowly reducing my dosage of Ropinerole w/guidance from the wonderful folks on this website. My goal is to get off Ropinerole completely, but I'm questioning what will happen w/my RLS? Will it go away? I know, Dream On! But it seems the less Ropinerole I take, the less I suffer from flare ups.

So I do need advice about what kind of plan I can follow to manage my RLS from here if and when I get off the Ropinerole?? Any thoughts? Ideas? Recommendations?

There was a time when I didn't have RLS--is that true others here. Many people say they've had it since childhood. I never got it until a failed foot/ankle operation 12 years ago, after which a podiatrist put me on nortryptine for nerve pain. That helped my foot and ankle pain, but I think it may have triggered the start of my RLS. I'd be interested to know if anyone has any thougts or opinions about my RLS trigger Theory?

[Izzybelle22]

Hi Bgamin1947. I have the same question as you...where to now? I have been on ropinirole for about 15 years with phenomenal success...until recently. About 6 months ago I started to experience augmentation and that sucks beyond belief. I still take ropinirole (2mg twice a day) but it is taking much longer to kick in and when it finally does, it is not as useful as it had been in the past. I have lost months if not years of sleep due to this disorder but I have heard that a common cause of RLS is genetic - it runs in the family. The best help is on the RLS website RLS.ORG here in the US. I have been a contributing member for years and if you sign up with them, they invite you online to all of their webinars which are fascinating. 15 years ago I thought I was all alone with this God-forsaken affliction, and today that couldn't be farther from the truth. Coming to Health Unlocked is one of the best websites I have been on and everybody here is so caring and helpful. I wish you the best of luck and should you hear anything insightful, please share. Thanks.

[Bganim1947 in reply to Izzybelle22]

Nice to read your story. Where are you in the US? I'm in Rhode Island.

Have you tried Iron Bisglycinate? That alone has enabled me to gradually & slowly reduce my Ropinerole dosage--now down from the 12mgs where I was getting almost daily augmentation. It is also called gentle iron--much more effective that iron sulfate, which I was taking for years to no avail.

Iron bisglycinate seems to be the key to managing my RLS and intervening when I notice a flare up coming on. I usually just take it before bed w/OJ--essential to take with Oj or vitamin C to help it assimilate into the body properly and faster. But now if I notice an augmentation bout coming on, I take one addition 28 mg. Capsule of iron bisglycinate, and usually in less than 5 minutes it is gone.

I do have to take care not to take this additional dosage of iron to often, since too much iron can cause a serious toxic reaction.

Unfortunately though, I don't think the iron alone will be enough to manage my RLS after I'm off Ropinerole. We'll see what others on this site have to say about that.

[Izzybelle22 in reply to Bganim1947]

Hi Bganim1947. Thanks for your input. First, quick question...were you taking 12 mg of ropinirole a day? Here in Maryland, the law only allows 4 mg per day. That apparently is the legal limit. And yes, the iron I am taking along with the ropinirole is Iron Sulfate 65 mg and it hasn't done a damn thing Thank you very much though for the "other iron, Iron Bisglycinate." I had heard of it in passing but never got the proper name of it although I am sure in was handed out many times over on this website. Thanks again for the info.

[Bganim1947 in reply to Izzybelle22]

Sorry just saw your post. Yes, 12 mgs. Of Extended Release Ropinerole per day prescribed by my neurologist a few years ago. The folks on this site clued me into the fact that I was going through constant augmentation as I was way over dosed. I promptly fired him after writing a letter chastising him for calling himself an RLS specialist. When I first saw him I was on 4 Mgs. ER, then every time I came back concerned about the extreme flare ups I was experiencing, he just upped my dosage from 4 to 12 mgs in less than a year.

Thanks for the info about dosages over 4 mgs being illegal in the US. Wow!!!

[Bganim1947 in reply to Bganim1947]

BTW. I took iron sulfate for years. It did nothing for me either. When someone on this site told me about iron Bisglycinate as a way to deal with augmentation, I went right out and bought some. It was at my local drugstore, and over-the-counter supplement, one capsule 28 mg. It made an immediate difference. Now as soon as I start to feel an episode of RLS coming on or augmentation, I take one 1 iron Bisglycinate with a glass of orange juice, and within 10 minutes it's gone. It's a miracle supplement. I don't believe I would have gotten from 12 mg down to 2 mg of Ropinerole in six months had it not been for iron Bisglycinate also called gentle iron. FYI it must be taken with orange juice though. It helps to fully activate the affects.

[marsha2306]

I didn't get RLS until I was 63. I take 600 mg gabapentin at 9:00 pm and thank goodness it's under control.

[pmarland6833 in reply to marsha2306]

Hi all ~ I also take 600 mg of Gabapentin. Took my RlS away at first (only used it for aprox 2 weeks ) then I started to wake up after only 2 hrs of sleep. Didn't have RlS, but can't go back to sleep. Plus my hair is getting thinner by the day. I've read on this site that this med has this reaction for some. Lucky me...What do I do now.? I can't keep loosing my hair. Any suggestions on what I should switch to ?

So frustrating !

[macewan13]

I came off Ropinirole a couple of years ago after experiencing ghastly augmentation. I needed codeine to help. I then went on to Lyrica but still needed the codeine and put on weight rapidly.

I am now on the Neupro patch - the same family as Ropinirole but less likely to cause augmentation. I also take one 50 gramme Tramadol at about 7 pm and another one during the night if necessary. So far, so good. It's been nearly a year. I still get occasional bad evenings or nights, particularly if I am very tired but, on the whole, it's ok.

My RLS is genetic, so I can't help you there but I'm sure others on this forum can.

[Bkc1777]

Hi.

Well done for coming this far. I have gone cold turkey and went through hell for 5 days :)) luckily I wasn't on it for long.

My rls was worse when came off but slowly got better. I kept a food diary and cut out caffeine, chocolate and alcohohol at first. Started with low foodmap diet but then introduced food one at a time. I started taking iron bisglycinate (which was a miracle cure) b12, folic acid, magnesium and calcium. In my case alcohol that contains sulphites is a no no. Have not introduced caffeine back into my diet yet but I am happy without it.

I tell you what, apart from occasional nights I think I am rls free now (I am scared to say this cause I don't want to jinx it:)) When it flares I take iron with o/j and it seems to calm down.

I remember having mild rls but I used to get up and walk around room was good enough to get rid of it until when I was in Turkey last August. I had 2 weeks of hell and started pramipexole. I believe it was the heat triggered it but who knows. I carried on taking pramipexole and was about to run out tablets and I called to doctor begging him to prescribe more before I ran out them. (This was around March I think) I put myself on the lowest dose after that till April. Then after reading on this site I decided that I will give it a go and even though I had terrible few days now I think IT WAS ALL WORTH IT.

So hopefully your experience will be similar to mine. it might take a while but stay patient and finger crossed you will get there.

Hope,

Bx

[Cindymcn in reply to Bkc1777]

What is iron bisclynate?

[Bkc1777 in reply to Cindymcn]

Iron Bisglycinate is an extra gentle form of iron which is highly absorbable unlike synthetic iron medications.Iron Bisglycinate tablets have iron + Vitamin C which further helps increase absorption of iron from the gut into the bloodstream. Unlike many iron tablets, is a non-constipating iron supplement and contains a form of iron called ferrous bisglycinate which does not irritate the stomach nor the digestive system helping to prevent constipation commonly associated with synthetic iron supplements.

B. X

[Hidden in reply to Cindymcn]

Iron bisglycinate has been a miracle supplement for me as well. I've started taking magnesium during the day as well but it is my bedtime dose of iron that allows me to sleep without RLS.

[Zappa]

I take .50mg ropinirole about 20.00 hrs then around 23.00 hrs take one tablet of madopar ( levodopa) 100mg/25mg (benserazide this most times gives me 3 to 4 hrs sleep after this it's hit and miss until getting out of bed around 08.30 I think that you may take half the ropinirole you take 1.mg and ask your Dr to try the Madopar also sorry I can't suggest any thing else

Good look Zappa

ps if you have any tips about RLS please leave a note on site

[involuntarydancer]

Bganim, I don't want to get your hopes up - I am not a medical expert - but I do wonder if, in the unusual circumstances of your case, you might find a particularly big improvement once you get off the ropinerole completely. Your dose of ropinerole was so unusually high that it was surely causing awful exacerbation to your RLS symptoms.

The gabapentin and tramadol you are already taking for your foot are good for dealing with RLS also and it may be that once the ropinerole is completely eliminated and your system resets itself, they will suffice to deal with your RLS also.

You have done incredibly well to reduce your dose as much as you have already. In your shoes I would certainly be aiming to get off the ropinerole completely. I would also seek to stay off all dopamine agonists for at least a month. Maybe you could increase your intake of tramadol to help for that period as initially (as you already know) the symptoms are likely to disimprove. If you do encounter continuing problems - after you have completely eliminated the ropinerole - you could perhaps slightly increase your tramadol dosage or the gabapentin or you could consider using neupro (at a very low dose). Really (to state the obvious) you need to get rid of the ropinerole before you will find out.

I am one who did not develop RLS until adulthood - for me it came on in each pregnancy and unfortunately did not go away after the last one.

Good luck with your continuing reduction in ropinerole. Keep us posted - it is always interesting to hear how you are getting on.

Rachel

[Bganim1947 in reply to involuntarydancer]

Hi Rachel,

Thank you so very much for your reply to my questions. I've been thinking exactly the same thing. Following Jools advice, a week ago, I went from the 2 mg Extended Release Ropinerole to two 1 mg regular Ropinerole tablets. I had some daily maddening bouts of augmentation for a few days after, but my trusted Iron Bisglycinate along with tramadol and Gabapentin calmed it down in a half hour or so.

I agree with you that I really need to get past the Ropinerole completely, but slowly. Let my body ease past all the meds from my surgery. I really think the Percocet aggravated my RLS too. I was also thinking that just the Tramadol and Gabapentin plus iron might just do it. Time will tell of course, but thank you ever so much for reinforcing my own emerging awareness about this condition.

I will also follow Jools' recommendation that I continue to decrease my dose of the 2 mg regular Ropinerole down maybe each month by .5 mgs, since these pills can be cut in half, which the Extended Release pills couldn't.

This entire experience has really convinced me of my need to write about this in articles and maybe eventually a book. I am appalled at the lack of knowledge in the medical community, the lack of adequate medication available that can help not worsen this condition, and the huge number of people who suffer mostly in silence, unaware of what is going on in their bodies. This is a serious condition that requires serious attention on all fronts. I've actually written my first article on my experience with the titration off this horrible Ropinerole medication, and what I've learned from the folks on this website and the RLS society--I did join a while back. I am waiting to submit my article to AARP and the RLS Society newsletter for starters as well as a few local healt-focused publications here in RI until I complete my titration off Ropinerole. I don't want to talk about how my efforts to get off it ALMOST worked. 😏

Thank you all for your help, I couldn't have done it without you.

BTW: anyone have stats on the number of people world-wide who suffer from some form of RLS? I will check online.

[involuntarydancer in reply to Bganim1947]

Wow; writing about it is a very good idea. Go you!

Yes, I ABSOLUTELY agree with Jools' advice to come off it slowly and changing from slow release to a form you can sub-divide was masterful. I didn't mean to suggest you should just ditch the last 2mgs - titrating down slowly is the only way.

The only figure I have heard re number of sufferers is 10% but I think this includes all levels of severity. Also I have heard that it is much more prevalent in northern european populations (seem to remember Sweden being mentioned - possibly by Dr. Early in one of the Johns Hopkins videos) but hard to know where the figures come from because it is certainly recorded as prevalent also in India.