Ropinirole : I've got a silly question... - Restless Legs Syn...

Restless Legs Syndrome

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Ropinirole

mwsteele profile image
35 Replies

I've got a silly question that someone here may know the answer to...

I currently take 1mg of Ropinirole at 9pm..I know it is supposed to have sedative effect however I'm not getting anything along the line of "sleep" until about 8 hours later. So my question is: does anyone know or have experience of taking it earlier in the day?

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mwsteele profile image
mwsteele
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35 Replies
Joolsg profile image
Joolsg

I don't think it's the drug for you. You have only been on it for less than 2 months and have had the dose increased to 1mg yet still not getting any sleep. If it was going to work for you, you would be getting some sleep between midnight and 6 am.

Maybe this is a good time to review all the med options, take the info to your GP and consider another med.

Pregabalin has had good results, here is a link to a study showing its efficacy

pharmpractice.ku.edu/journa...

[Sorry, for some reason this laptop doesn't show the link above in blue so copy and paste the link into your browser].

Maybe, if you stop the ropinirole now, as it isn't working, you may not suffer withdrawal.

Clearly this is something to discuss with your GP before you consider increasing the ropinirole to the maximum of 2mg.

As others have replied previously, augmentation is common on ropinirole.

Best of luck,

Jools

mwsteele profile image
mwsteele in reply toJoolsg

Thanks, I'm due at the doctors anyway next week for my b12 injection, I'll mention it then.

Bganim1947 profile image
Bganim1947 in reply toJoolsg

I have a question for my site mates: how many mgs. of iron Bisglycinate can I safely take per day? I am now on 28 Mgs. before bedtime, but since I've titrated down to the 4 mg. dose of Ropinerole ER from the 12 Mg. dose I had been on since January, I have been experiencing a little annoying twitching in my right leg when I take my 5 PM dose of Ropinerole. But it doesn't happen if I take it with iron. Any thoughts about the safety of taking (2) 28 Mgs of the iron Bisglycinate twice a day? I'm a 70-year-old female.

Joolsg profile image
Joolsg in reply toBganim1947

Hi Bganim,

Post this question as a new posting and you will get more responses.

What is your serum ferritin level? I f you don't know, go to your GP and get bloods done and then if serum ferritin below 75 you can take supplements to raise level. Normal levels for people without RLS are much lower than for those of us with RLS. Dr Buchfuhrer in California advises levels should be nearer to 200 to get best results.

Discuss results with your GP, but one 28mg of bisglycinate is a low dose and shouldn't cause any harm until you get your blood results. I'd hold off on higher doses until you know your results.

Jools

Bkc1777 profile image
Bkc1777 in reply toBganim1947

Hi,

I used to take 2 at the beginning if one didn't work. You can start with one and see how you feel. I used to take one and if I didn't feel relief then I would take another one after half hour.

But like Jools said get your ferritin levels checked please.

Hope you feel better asap.

B. X

Bkc1777 profile image
Bkc1777 in reply toBganim1947

But then I must say I wasn't taking iron bisglycinate with DA ever. So best to check with the doctor.

mwsteele, are you saying the Ropinerole is not helping to keep you RLS quiet...? or that you just cant drop off to sleep as in insomnia. ?

mwsteele profile image
mwsteele in reply to

It's calmed down the leg twitching immensely, but that's it...I still can't sleep. Doc won't give me sleeping tablets for obvious reasons.

Bganim1947 profile image
Bganim1947 in reply to

I've been titrating down from 12 mg ER Ropinerole since January. Iron Bisglycinate, 28 Mgs 1X/ day at bedtime W/OJ has enabled me to do it without any more augmentation or withdrawal symptoms.

Now that I'm on 4 mg of Ropinerole after four months, I'm experiencing a little twitching, not every day, when I take a nap around 5 PM in right lower leg. The iron stops it almost immediately, but if I take it at 5 pm can I take another 28 mg of iron Bisglycinate at 11:30 PM if needed. I think maybe I went to 4 mgs a little too fast--down 2mgs of Ropinerole each month. I was completely symptom free at 6 mgs ER.

The twitching in my right leg is not at all like my original RLS when I came to this site in Jan., which was a full body involvement--unbearable.

I was on 325 mg of iron sulfate for quite a few years. Itdid nothing my last ferritin test was about 100. I'll get another BP test on Monday.

I have heard of people complaining that Ropinerole altho is working to keep their legs quiet they instead are awake with insomnia. I know doctors are reluctant to give sleeping tablets.

mwsteele profile image
mwsteele in reply to

I'll get there in the end...still new to this condition

Maureen133 profile image
Maureen133 in reply to

I bought some calms to help me sleep.

mwsteele i have been reading some of your previous post. Are you still having the sudden falling asleep episodes...? If so then you need to discuss that with your doctor and think that maybe its not the med for you.

mwsteele profile image
mwsteele in reply to

That sudden part has gone, I get tired because of lack of sleep like I used to before RLS...

datsoon1 profile image
datsoon1

theres a simple answer, take the pill earlier ??

mwsteele profile image
mwsteele in reply todatsoon1

That's what I was asking...obviously I'll check with my doctor, but I wanted to see if anyone had experience of it much earlier in the day

datsoon1 profile image
datsoon1

what time were you taking the pills ??

mwsteele profile image
mwsteele in reply todatsoon1

I've tried every half hour between 8pm and midnight

datsoon1 profile image
datsoon1

as they take quite a time to react with you...we are all different... try making it half hour a day earlier see where that gets you, good luck

mwsteele profile image
mwsteele in reply todatsoon1

Thanks

datsoon1 profile image
datsoon1 in reply tomwsteele

good luck

mwsteele profile image
mwsteele in reply todatsoon1

Well I've tried taking it earlier as suggested and got less sleep. Maybe it's not the right med for me after all. Doctor in a few days so hopefully we change. Thanks though

BarbaraMacQ profile image
BarbaraMacQ

Yes I take ropinerole earlier in the evening. Been on it over 9 yrs. needed to start off on .25 and slowly increased over a few weeks . Was taking 3mg for several years but with the iron I can now manage with 2mg. 9pm would be far too late for me and my rls would have kicked in by then. I've found that about 1 to 2 hours after taking It i have to go lie down so I take by 7.30 latest and always in bed by 9. for my best result I take on empty stomach with the iron then have my supper then bed and can usually get a good nights sleep. It has some nasty side effects nausea, congested nose, runny eyes but it's been my lifeline as without it I'm walking the floor all night every night..........

mwsteele profile image
mwsteele in reply toBarbaraMacQ

Thanks for your reply...I think I need to experiment a bit with times.

Franklin123 profile image
Franklin123 in reply tomwsteele

Hi - I find that I have to take my ropinirole around 5p.m. BEFORE Dinner. It seems to take longer to work if I have eaten. Last night was particularly bad - codeine and paracetamol and 0.25 extra ropinirole during night, but hopefully better tonight - at least I am still here! Keep positive.

khills profile image
khills

I take ropinerole at 5-6 pm before RLS kicks in. I go to sleep about midnight and have a great evening free from RLS. I also take tramadol with it which also really helps.

mwsteele profile image
mwsteele in reply tokhills

Thanks for your reply, I'm going to give it a go I think...

vocalistuk profile image
vocalistuk

I take my evening meds at 6-7pm with or just after eating and rarely go to bed before midnight - 2am unless I am feeling shattered.

Bganim1947 profile image
Bganim1947

I've been the whole root through Ropinerole--as many on this site know. With the help of everyone here, my pharmacist and GP, I left my neurologist who had increased my Rolpinerole Extented Release from 4 to 12 Mgs. In less than a year that was causing severe augmentation, and began to reduce my dosage of Ropinerole by 2 Mgs. a month. Like everyone who has tried to get off Ropinerole, I was worried about withdrawal. But for me, the augmentation was intolerable. The most important advice I received my first night from a member of this website was to try Iron Bisglycinate as I reduced my Ropinerole. It worked, and hasn't stopped working. It's been 4 months and I am down to 4 Mgs. Extended Release daily plus the Iron Bisglycinate.

Yes, you may want to speak with your GP and get off the Ropinerole--at 1 mg./day it it should be easy. But first have your Doc order a blood test to check your iron stores, most RLS is caused by low iron stores. If you are low, then try the iron or ferrous bisglycinate once a day a half hour before bedtime with a glass of OJ. It will makes you a little drowsy--a great side affect for an RLS sufferer. I take my Ropinerole at 5 PM. It does make me a little sleepy. Since I began taking the iron Bisglycinate though I haven't experienced augmentation at all as I have been coming off the Ropinerole. I think Ropinerole is a dangerous medication. Also I was taking iron sulfate for years, it didn't help at all. The iron Bisglycinate is my magic bullet for RLS.

mwsteele profile image
mwsteele in reply toBganim1947

Interesting you should mention iron, I had a blood test done and my ferritin level (which apparently should be around 100) is 427!

Maureen133 profile image
Maureen133

I take 1mg at 10 am,1mg at 5pm and 1mg at bedtime.sometimes I take 1mg at 4 in the morning,if its bad.I don't have any side effects.it's not a cure,but it helps.

involuntarydancer profile image
involuntarydancer in reply toMaureen133

Hi Maureen, it's no joy to post this, but that is a high-ish dose you are on. It is a great drug when it is working but you should monitor yourself carefully for side effects - particularly compulsive behaviour (gambling, shopping, internet use) - at that dose. I would resist increasing the dose any further and find something else to supplement it to deal with breakthrough symptoms.

Ellaine11 profile image
Ellaine11

Yes I take 2mg about 2pm then another 2mg about 9.30

Hedgie22 profile image
Hedgie22

I have just switched from Pramipexole 0.088mg as it was no longer helping to Rapinorike 0.50mg. It hasn't helped the rls and I'm just not getting to sleep. However these doses seem v low compared to some of you! Not sure what I should do!

vivimay profile image
vivimay

Hi, I have been on ropinirole now for around 6 weeks.I find I have to take mine late afternoon around 4-5pm.But I am on 4mg now , I feel it can cause a bit of restlessness soon after taking it so the earlier the better for me anyway. Hope this helps.

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