Stuck on ropinirole

[Rish]

Hi everyone it’s been a while since I was last on here, if anyone can remember I was taking 3 2mg Ropinirole in 24 hours and I tried my best to come off them! It was torture. Anyway I had a week where I got fed up with everything and I stopped all my medication apart from ropinirole, I discovered stopping my diabetes metformin I got down to takin 1 2mg ropinirole in 24 hours which was great but then I ended up very unwell with kidney problems. I am back on the diabetes medication and back upto3 2mg ropinirole 😞 fed up don’t know what to do.

Hoping you are all as well as can be x

[Hidden]

Rish, I can't really explain what's happening with you. You seem to be suggesting that there is a relationship between taking Metformin and RLS. This could be possible, but I doubt it.

In any event, the consequences of not taking a diabetes medicine are potentially more dangerous than taking a higher dose of Ropinirole. You should really not be stopping the Metformin.

I am assuming that by 3 2 mg you mean you are taking three 2mg tabs of Ropinirole, i.e. 6mg rather than thirty two mg. This is usually written as

3 X 2mg

This is quite high and more than the recommended daily dose. However, if you do want to reduce it, you will need to reduce it slowly and also replace it with an alternative.

[Hidden]

Hi Rish you must take your metformin. How were you coming off the Ropinerole, explain to us. Its usual to wean down very slowly, maybe you were reducing to much to quickly? Its usual to take something like tramadol which helps with the withdrawals, and some take gabapentin aswell.

[Rish]

Hi , yes taking 6 mg sorry for the way I wrote it! Yes I tried to reduce the Ropinirole but I could not sleep ,sit or even stand my legs were buckling and my body itching! Anyway I got myself so fed up I stopped all my medication apart from the ropinirole well I noticed that I got down to taking just one 2mg in 24 hours that was great but I got kidney problems and I think it was because I stopped taking my metformin so I started taking it again and then the ropinirole didn’t work so I’m back up again to 6 mg 😞 I’m wondering if the metformin stoops the ropinirole working fully? Hoping you can understand this 😃

[Siberiancats in reply to Rish]

I was on a previous drug which then ceased to to work. GP has now put me on Rapinirple which is next to useless as it’s having no effect on me. Anybody have any suggestions as I’m desperate?

[Rish in reply to Siberiancats]

How many tablets and mg do you take? I find I have tried them all , they work for a while then stop and now I’m stuck on them but higher dose than the Rls recommend! I can’t get off them I have tried .

[ironbrain]

Three 2 mg tablets a day (one between about 2:30 and 3:30 p.m., another between about 5:30 and 6:30 and another at bedtime) is the dose I'm on, and have been for quite awhile.

When my RLS was only just starting, an intake of carbohydrate would give relief – the higher blood sugar level would boost dopamine production. Later on, I found a drug called mirtazapine would actually bring on RLS symptoms – presumably because it has a tendency to make cells take up sugar and thus lower blood sugar. When I at first saw metformin is intended to lower blood sugar, I was surprised it didn't worsen RLS. As I read further, I saw it acted on mitochondria. One theory, quite a strong one I believe, is that mitochondria hogging iron is the cause of RLS. Maybe, therefore, metformin alters mitochondrial iron use/absorption.

Also just spotted that interleukin-17 (IL-17) affects mitochondria. IL-17 is much associated with our autoimmune responses, and is found to be at raised levels in RLS sufferers. I've been wondering how IL-17 might affect iron levels relevant to RLS.

[Tamaroy]

Your Metformin is really important, it can play systems up important nevertheless, try dropping Rop every other day or maybe high dose low dose every other day stay on that for about 3 weeks then try dropping again, remember that you have the power not Rop, don't try to quit it too quick. Good luck!

[Rish]

Thank you but I have tried dropping of them I just can’t do it my legs go mad and all I do is cry! Even when walking or standing my legs buckle and it’s awful! I’m seeing my doctor on Wednesday so I’m going to ask about the diabetes tablets . Thank you all for your information and commitments it’s much appreciated x

[Tamaroy in reply to Rish]

Manerva has helped me, knows what they are talking about, and I see they have given some advise, take heed.

[Rish in reply to Tamaroy]

Yes I know the advice is good but I have tried many things and some things work for one and not for others! I have been taking many tablets to try help me get off the ropinirole and it doesn’t work I am also a person who will take extra if it doesn’t work within the hour so yes I do overdose but my body seems to reject it as normal people would be knocked out! The neurologist said it was fine for me to take 6 mg of ropinirole but it doesn’t last long ! I find nothing helps and it’s torture! My rls is 24/7 and has been since I was 19 years old . When I have operations they have to double up on pain relief and anaesthetic s because I can feel everything the last one still brings tears to my eyes because I can still feel the surgeon cutting me open and how it all felt , my body doesn’t seem to take much effect from medicines. When I come off medication I do it without reducing it I stop them within that day and I get no side effects so to me that says it’s not working . The only one I can’t get off unless I have another of it’s kind to replace it is ropinirole and I don’t start off on a low dose no point I have told the doctors I need similar dose or it won’t work and how I know it because I have tried it! So at the minute I am off most my medication I only take the metformin and ropinirole .

[Hidden in reply to Rish]

Rish you are augmenting so, the 6 mgs wont last long, and you will find you want to increase it to get relief, Your body is asking for more and more and more Dopamine, as you keep increasing the dose. I have PM you, in the hope it will help. x

[Rish in reply to Hidden]

Thank you Elisse x

[Hidden in reply to Rish]

Also you saying about taking a similar to Ropinerole, you cant do that, once you are augmenting on a dopamine med then to try to take another one like Mirapex you just keep augmenting, x

[Tamaroy]

Metformin played my hubby up, he is now on Gliclizide with no side effects, ask your Doc about those too. Maybe the Metformin is the culprit.

I have been there and done that Rish, after 42yrs of RLS I am still trying, really accept that your legs will do what they will do, heaven knows we on this site would love there to be a fix for all drug, it might happen but not now.

Good luck fellow sufferer.

[Rish]

Here are a list of my medications I am supposed to take

1..ropinirole 2 mg 3 to be taken in the evening 2..pregabalin 75 mg 2 to be taken twice a day 3..gabapentin 300 mg one to be taken at night

4..codeine phosphate 15 mg take 4 at night

5..Metformin 500 mg two tablets twice a day to be taken with food

6...gliclazide 40 mg One taken with main meal once a day

This is what I’m supposed to take and it’s all here with me I got fed up of taking them and stopped them apart from the Metformin and Ropinirole I don’t even take the gliclazide any more I’m fed up of all these tablets.

[Hidden]

Now that Rish has posted all the meds she should take and the doses, can our more experienced members who have augmented on a DA now see if they can help her. She cant take Tramadol, so cant change the codeine to Tramadol. Maybe a different opiate could work better for her ? I have already advised her to reduce her dose more slowly, Any more advice for her ?

[Rish]

Managed to get myself down to taking one 2 mg Ropinirole it’s been very hard and emotional but getting there .