Ropinirole not working

[SheNew]

Hello everyone, I've been taking Ropinirole 0.25mg for 2 weeks for my rls. I have gradually increased my dose (now at 0.25mg x 3 per night). I haven't noticed any difference as yet and I have resorted (every 3 nights or so) to taking 2 x co-codamol 15/500mg at about 2 am as I am just desperate for sleep. After taking this I'm asleep within 30 minutes and get a good 7 hours rest.

My problem is that my doctor wants me to stop taking the co-codamol but it's the only thing that gives me any relief. I see my GP again in 2 weeks and am not sure what to expect from her as the next line of treatment.

I would love to hear any of your views/experiences. I am really worried that my GP will stop prescribing co-codamol as she doesn't agree with me taking it!

[Joolsg]

Usually, if ropinirole is going to work, it works pretty quickly. However, it would seem you are someone who is not going to benefit from it. If after a month on .75 things don't improve, then ropinirole is not for you. It causes augmentation and is no longer the first choice treatment for RLS. If you're getting relief from low dose co codamol, talk to your GP and discuss that as the ongoing treatment. Anyone who has gone through Augmentation and the horror of withdrawal from it would happily explain to your GP that opioids are a better drug option for those of us with RLS.

Out of interest, did your GP get bloods done? You need to know your serum ferritin level which needs to be 75 + , preferably 100+.

[Juliewils1965]

Hiya I'm on same dose as you prescribed ropinrole then took off now back on cudnt stand the pain in legs walking around all night so so tired 😴 now on pregabalin 200mg a night and amitriplene 50mg walked around like zombie but slept a little better and when I do wake up thru night I take paracetamol so don't let your doctors talk you into what to take if you have a good sleep with co codamol like I've asked previous do doctors really understand rls hope it goes well for you xxx

[Joolsg in reply to Juliewils1965]

Julie,

Amitriptyline is usually really bad for RLS. It makes RLS 1000% worse for most of us. If you are using it as a nerve painkiller, try pregabalin instead. If as an anti depressant try Trazodone or Bupropion.

If you're one of the few for whom it doesn't make RLS worse, just ignore me.

Jools

[Tracylee77]

Hi pramapraxol works for me

[Joanne7011]

I am waiting to find out from doc what my full iron count is although I have been taking gentle iron each night / I had a crap holiday as no sleep and even co dramamadol did not work - I am rubbing voltarol on legs each night / don't be put off by docs / demand help as I need help / good luck

[taylord1984]

First post but this topic has made me want to post. I'm wondering if my rls doc even has a clue. I was on 3mg ropinirole a night starting with a range of sub mg dosage for the first few days, building up to 1mg tabs 3x a day within a month. Then I said I still wasn't sleeping and that I don't care about day symptoms. He then said a could take all of it at night(3mg). Still not working BTW.

Now I'm seeing that is way to much of a dosage going by your post and the replies. I'm the same as you, co codamal works wonders but on a dosage of 30/500 x2. He want let me have co codamal though, I pinch them off my mum when really desperate.

Anyway with that said you might find taking a single 30/500 instead of 15/500x2 co codamal. As it's the codeine phosphate that will be helping the most. The paracetamol just complement the codeine. I've tried codeine on it's own and that didn't work just so you know. It is always good to lower paracetamol dosage if you still have the same results. You may need the paid relief latter in life.

[Parky1949]

Find a neurologist for your RLS, verify they are knowledgable about treating RLS and dopamine/augmentation.