Ropinirole dependency

I've just been diagnosed with RLS and have been advised to start taking ropinirole. Will I then become dependent on it for the rest of my life? Can you ever stop taking ropinirole once you start?

[Joolsg]

Did your doctor fully discuss the side effects of this drug? New guidelines in England mean you have to be made aware of Impulse Control Disorder ( people have lost their family homes & marriages due to gambling/alcohol/sex/spending addiction) & the high risk of Augmentation.

The first thing your doctor should have done is order blood tests & ensure your serum ferritin is above 100, preferably 250 BEFORE prescribing medication. 60% of RLS sufferers have dramatic improvement by raising levels.

Dopamine agonists are no longer first line treatment so I would ask your doctor to do the blood test first and then ask him/her to prescribe pregabalin or Gabapentin. They are better drugs for RLS.

Please be aware that doctors know absolutely nothing about this disease, how to treat it, what drugs are best & what augmentation is. We have to research the condition ourselves to avoid overprescribing by doctors. It’s not taught at med school & there are only a few neurologists in the UK who know about the disease in any detail.

Avoid anti depressants & anti histamines & cough & cold meds as they worsen the condition.

I was on Ropinirole for 15/16 years & suffered horrendous augmentation & a traumatic withdrawal. The drug can permanently damage your dopamine receptors which means the alpha2delta ligands like pregabalin & Gabapentin will then not be as effective as they are for someone who has never taken them.

If I were you I would hold off & wait for blood tests, raise ferritin & only if it doesn’t help consider Pregabalin or Gabapentin.

[LotteM]

Good reply from Joolsg. Can anyone in the UK post the link to the NICE guidelines (as I can't)?

[Doversoul]

I second everything that Joolsg has advised. I would also add that diet can be an influence on severity of RLS symptoms. Loosing excess weight will have benefits and will allow any medication you are finally prescribed to be better absorbed. Exercise is also an important factor, and avoiding alcohol and caffeine, altogether, but at least before bed time. The right medication is a big help but it's also necessary to make changes to life style.

RLS is a condition that has symptoms that are common suffers but , the impact of them is very much an individual experience. I have taken all of the Dopamine medications, in different forms, regular release, slow release and patch. They all eventually lead to the hell of augmentation. I have also taken clonazepam and gabapentin in addition to Ropinirole. My body didn't absorb gabapentin very well giving me stomach and bowel problems. Clonazepam had some benefit but was in addition to ropinirole and on it's own would have been ineffective, and augmentation was a continuing hell.

I have been taking Pregabalin for 2years and my life is very much better. for it. I keep to the daily max dose of 300mg and have never suffered a day of augmentation. It cannot cure RLS and there will be times when RLS symptoms are strong. However, in my case, I find that walking can help to reduce the severity and provide sufficient benefit so that I can get some sleep.

I have underlying health issues (PLMD, heart, arthritis and Prostrate) so getting off to sleep can be a daily problem . But, I can now watch a film, train journeys are no longer a problem (and air travel would likely be ok), visit friends and family, sit and read a book and get better sleep periods. at night.

[Hidden]

Here's some links to some information you will find helpful.

cks.nice.org.uk/topics/rest...

pubmed.ncbi.nlm.nih.gov/274...

sciencedirect.com/science/a...

pubmed.ncbi.nlm.nih.gov/145...

[bill54321]

Please start at .5mg 2 a night. If jerks come day time, take 1 at 12 noon and 5 night. This is because RLS may be myoclonic physical jerks in the day. Leaning back after you eat and becoming somulant(drowsy) will initiate the jerks. The literature does not tell you. I take ropinrole 3 times a day on this schedule ALL, drugs, ALL drugs, ALL drugs will become ineffective if you try for 100% relief. In the morning you are active. If you forget noon or 5 pm, don,t blame it on the meds. Also. I take tramadol( weaker pain med) with the RLS. DO NOT FOLLOW MY INSTRUCTION UNLESS YOU CHECK WITH YOU DOC> I also have neck and back issues and am 90 Yrs old and a retired Physical Therapist. I have been on this routine 2 years. You will find NO HELP IN THE LITERATURE about day time jerks except for fatique. It IS SOMULANCE< IT IS SOMULANCE< IT IS SOMULANCE. good luck. Listen to your doc. If he disagrees, see a movement specialist.

[Hidden in reply to bill54321]

Ropinirole, a dopamine agonist or any other dopamine agonist, pramipexole or rotigotine are no longer recommended for the first line treatment of RLS.

As with any drug, it's usual to start at the lowest dose possible and build it up until it works. That is if it's necessary. This is especially true of dopamine agonists as it's recommended that even if you do take one, then the dose should be kept as low as possible to avoid augmentation. E.g the recommended starting dose of ropinirole is 0.25mg per day.

However, as I write, I wouldn't recommend that anybody who's not taken a RLS medication before to take ropinirole

[Joolsg in reply to bill54321]

Daytime jerks are usually Augmentation. You’re advising an increase from 1mg to 3mg which again is inadvisable as it is above the 1mg recommended daily dose & increasing the dose leads to augmentation very quickly.

[Vichic]

Hi I’m in Australia & have had RLS for about 50 years, have had varying success for periods of time until the dreaded Augmentation. My Sleep Specialist advised stopping all Dopamine agonists as I’d had horrendous side effects such as impulse control. He started me on Opiates...which all the literature from the U.S. is advising as the best treatment. I had 5 years on OxyContin without the need to alter the dose. I have just recently started having to add Ropinirol to it, unfortunately. I really don’t want to go back down that road. I have regular Iron Infusions. RLS is torture.

[restlessstoz in reply to Vichic]

Try reading some of Shumbah's posts on buprenorphine. It might just be the drug for you. I'm on it in the form of patches which I have not had a problem being prescribed by my GP. The sublingual form is MUCH harder to get approval for. It's still an opiate but targets other receptors and is not supposed to be as addictive, however, people who take opiates for RLS don't seem to have that problem anyway as do people needing it for pain. I have read that having augmented already on DAs you're going to do the same going on Ropinirole. BTW, I'm in Tasmania...