RLS for over 20 yrs

[travelingannie]

I don't see many people who suffer with RLS mention the drug I am on..along with 4 mg of ropinirole at night ( recently upped from 3 ). I take CARBIDOPA-LEVODOPA 2tbs( 25/100 ) 3 x times a day. during the day. I wonder if I am on to much medication? I am basically managing the symptoms with this dosing , but if I miss a dose by an hour or so..it hits me hard and it takes longer for the next dose to help. I would be interested in hearing from others that take carb/levo.

[Joolsg]

To answer your question- yes you are on too many meds and too high a dose.The reason you won't see Carbidopa/levodopa mentioned much , if at all, is because it's no longer used for RLS because it is the most likely to cause severe augmentation.

If you've recently upped Ropinirole from 3 to 4mg and you're taking 2 tablets of 25/100 carbidopa/levodopa 3 times a day, you are way in excess of the maximum doses for RLS and Augmentation will be happening soon- I suspect it's happened already.

Please read the pinned post on the right on Augmentation. Effectively it's when the drugs stop being effective, you increase the dose, the RLS becomes more intense & severe, starts earlier in the day and spreads to other body parts like hands, arms, back, trunk and in my case, my face!

You have to reduce the dose very, very slowly over several months, ideally while starting a med which will help once through withdrawal. Pregabalin is the new first line drug of choice amongst British neurologists. You may need opioids like tramadol, codeine or oxycontin to deal with the withdrawals from Ropinirole and Carbidopa/levodopa as it can be very traumatic with RLS 24/7 and little or no sleep.

The temptation to take another pill of ropinirole to relieve the agony is overwhelming, but it does get better and once off dopaminergic drugs, your RLS will settle, you should have no RLS in the daytime and you should hopefully find you get good nights.

Read all the posts and replies, head over to the main RLS UK site where you can watch videos of Dr Early discussing Augmentation. The more you learn , the better you will be able to speak to your doctors ( most of whom will know very little) and get the right treatment .

[Hidden]

In one word arrrrrgh!!!

Jools spells it out

[Elijah5]

Ropinirole is very common and can be effective it's effectiveness will probaly become less effective over the I was on ropinirole for 3-5 years cardopa is for people with mild RLS Not all that effective

[travelingannie]

It does help me with daytime RLS...taking the carba/levo..but it had stopped working so Dr said take 2 _3 times a day and ropinole at night.. I also take 3-300 mg of gabapentin 3 times a day for nerve pain..

[LotteM in reply to travelingannie]

Taking the carbo/levo during the day because of daytime symptoms is adding fuel to the fire. I think we recently mentioned augmentation to you and how to go about it?

Edit: no, I was wrong. Please read recent posts and pinned posts about augmentation.