RLS-ROPINOLE

[help3]

Thanks for all your help. i have been off ropinirole for 7 days. it has took me over 9 months to reduce dosage down. still not able to sleep for first 4 hrs at nite. getting 3 to 4 hrs of sleep at night. this miracle for me whith out taking any meds. i believe longer i go with out better i will get.i have been diagnosed with RLS over 15 years

i was taking 3-.5 mg ropinirole with 1 hydrocodone at nite . never really noticed my RLS until i stop taking hydrocodone and my rls went full throttle for last year. i spent many nights pacing floors no sleep trying to get off this awful drug. dr kept trying every med for rls and even up my doses. i having to take meds at 700 pm at nite falling asleep. not being social with any one. i could not stand to be like that. it has took reading everyone's post that has got me this far. i hope this helps some one else having same issues

[Madlegs1]

Thanks for the feedback- I'm sure that will be very encouraging for the many people in similar situations.Have you had you serum ferritin levels checked-- need to be at least 100 or more.

Also keep a food diary to check for triggers,

Also look at possible triggering medications.

Keep well.

[67Waterman in reply to Madlegs1]

Good morning Madlegs

I have had my iron tested but my "quantity labels" are different to what you are saying. I have been told:

Serum total iron binding capacity : 53 umol/L

Serum iron level : 15.2 umol/L

Transferrin saturation index : 29%

I am still waiting for Ferritin to be done.

Any thoughts? Big thanks, Sally

[Madlegs1 in reply to 67Waterman]

I don't know much about all the different iron readings.

Serum ferritin is used as a marker for stored iron in the blood and so in the brain.

You should be able to get it as part of a blood iron panel.

[Freegaza786]

help3 positive to read you are off Ropinrole.

Are you managing your RLS without medication ?

[Hidden]

Hi Help3. I really don't understand the path you have taken, all the suffering and you still have 4 hours of RLS each night. It seems to me that you have a Dopamine problem, and the current research indicates the three DA's to fix it, and/or pain killers to reduce or stop the transmission of signals to the brain. Before 'big pharma' opioids were the only help, for hundreds of years. Why go off them? You are bound to suffer if you go cold turkey. Ropinirole, total daily doses up to 4 mg are FDA approved. Using an opioid and a DA is a logical move. I use Methadone and Ropinirole, and have a one month holiday with only methadone (increased 50%) then restart Ropinirole at 0.5 every 12 months or at 2.0 mg. I take my opioid at 9pm, and DA at 10 pm, then go to bed at 11pm. I have an interaction with a new drug, but that doesn't stop the efficacy of the recommended treatment for severe RLS. Well, anyhow, good luck on your journey, I wish you all the best.

[67Waterman in reply to Hidden]

Dear Ron

I do agree with you to be honest. I have (almost) stopped Ropinirole (augmentation DID happen quite badly, and am now on Gabapentin. But in reality, I have no faith in Gabapentin, because I believe that my RLS is a Dopamine problem.

There has been much written by many on this Forum and by scientists that Dopamine is a very dangerous drug and can cause much long term harm, so it is interesting to learn that you can take a month holiday and "restart" your Ropinirole again. How many years have you been doing this.

People say that Gabapentin can take up to six months to work ... half of me us saying that I really do not want to pump my body full of such a potent drug, when I believe that it will have no effect whatsoever.

It's quite a dilemma.

Kind regards

Sally

[Hidden in reply to 67Waterman]

I was the sme, 7 years of heaven then at 4mg augmentation set in. It was a nightmare, meetings standing behind my chair, walking the isles on planes. I researched and read Dr M. Buchenfuhrers articles. He sent me a letter for my specialist. He got me approval for low dosage Methadone. I'm im my sixth year, five resets, no probems at all. So over 12 years on Ropinirole, now 2mg max, average 10mg Methadone, no increase.

[67Waterman in reply to Hidden]

Thank you Ron. Can I ask if you ever drink alcohol with Methadone? I always have red wine with my dinner every night - not sure I can live without that! Kind regards, Sally

[Hidden in reply to 67Waterman]

I used to drink a lot. Red wine in UK, white in Australia. I stopped, and only have a glass when depressed or Christmas and weddings ( so I can afford Dom Perignon). One glass of red wine has healthy oxidants, but it depends how it affects you. Two bottles really makes me bad ;). Side effect of Methadone for me is only constipation and a bit of a foggy head on reset. I'd prob risk it, even if I needed a tiny bit more Methadone to compensate. Initial starting dose is 4-20mg and I'm nowhere near that. Why do you need it? sometimes it's just a coping thing. I hope this helps.

[67Waterman in reply to Hidden]

I love red wine with a meal ... and a glass of Prosecco as an apero (we lived in France for 15 years!). Please do let me know when you next open your next bottle of DP (grin!).

[Bluepainter]

Well done Help 3. I’m on that journey at the moment. I had dropped to half my previous dose (.25 at 6.00pm and .5 at 10.00pm) but am finding the next drop to just .25 at 9.00pm difficult. Am considering going back up by half .25 until after Christmas but am a bit reluctant. Thank you everyone for the support on this forum. It’s been the only way I have learned about RLS

[67Waterman]

Dear Help3.

Great to hear from you. I stopped taking Ropinirole a couple of weeks ago ... I had been on it 17 years. Despite low dosage compared to most (0.25mg during the day, 0.50mg in the evening), over the last two years my RLS was hitting me all day long, and the Ropinirole was not really working for very long at night.

I have been on Gabapentin for 3 weeks now (900mg at 7.00pm, 600mg at 9.00pm). But, just like you, I have 2 to 4 hours of "shuffling" (RLS) almost from the minute that I get into bed until I finally get to sleep.

I am completely unconvinced about Gabapentin for my RLS .... so it would be good to get updates from you as you are taking no medication, but your effects currently mirror mine.

Keep in touch, kind regards, Sally

[Joolsg in reply to 67Waterman]

Sally, like you, gabapentin did nothing to help my RLS. Dr. Buchfuhrer believes that many RLS patients that have been on Dopamine Agonists suffer permanent damage and gabapentin and pregabalin won't work for them.I tried Oxycontin and pregabalin for 5 years but still had very severe RLS.

I'm now RLS free and sleeping 8 hours every night on 0.4mg of Buprenorphine.

[SueJohnson]

I don't know why you have ignored my advice and Dr Buchfuhrer's about the way to take gabapentin. No wonder it is not working for you plus it can take awhile. And I don't understand why you have no faith in gabapentin in spite of the Mayo Clinic updated Guidelines on RLS. I take 1500 mg of gabapentin and it has completely eliminated my RLS. However since you were on ropinirole for 17 years it is quite possible it won't work for you.

[SueJohnson in reply to SueJohnson]

Plus it does not take up to 6 months for gabapentin to work.

[67Waterman in reply to SueJohnson]

Sorry Sue. I understand your frustration. You say 300 mg 6 hours before bedtime, 600 mg 4 hours before bedtime, then 600 mg 2 hours before bedtime.

I never know what time I am going to bed every day, so aiming for the dosage at 6 hours beforehand is not possible. So I am taking 900mg roughly 3 or 4 hours before bedtime and 600mg roughly 1 to 2 hours before bedtime.

The Mayo Clinic Updated Guidelines on RLS say "Evidence suggests that RLS is associated with low intracerebral iron stores due to as yet unclear defects in iron homeostatic mechanisms and downregulation of striatal dopamine receptors. Increased cerebral glutamate and decreased adenosine MAY also play a role in the pathophysiologic mechanism of the disorder." The word "may" gives rise to scepticism.

Quote "Gabapentin can be used to treat the symptoms of restless legs syndrome (RLS). It may be especially helpful if the symptoms are perceived as less intense yet painful." I have no pain but very intense RLS.

I will keep going with the Gabapentin and I hope to be convinced by seeing it working.

[cicek]

Well done for getting so far. I can sympathise with you as I too am trying to withdraw from this awful drug which I have been on for around 15 years. I am pacing the floor every single night with no break at all and also like you, cannot socialise for fear of not being able to sit down. I cannot go to the theatre or out for a meal due to my symptoms. We will beat this despite it being so difficult and hopefully we will be stronger people for it. Good luck and I hope you get the relief you are seeking.

[Hidden in reply to cicek]

If you are on a DA, then you likely need a holiday/reset, or a switch to an opioid. Advise you speak to your GP or a knowledgeable specialist for advice. It is recommended by the RestlessLegs Foundation.