Reducing down from 2mg Ropinirole

[jollyjune]

After taking Ropinirole for 4 years, the 2 mg I am taking does not help at all in fact rls is getting worse, I gather I must be augmenting. So two months ago I started to reduce 1/4mg over two weeks I am now down to 1mg and in agony. I have not seen my gp for 18months but I am thinking of asking for something to help the withdrawal symptoms. I suppose I will have to replace the ropinirole when I get off it or can I ask for a replacement before I have completed the reduction. There is a long way to go !!!!

[Hidden]

Reducing in steps of 0.25 mg (a 1/4mg) may be a too big a reduction. So first it might be better to reduce in steps of 0.125mg ( an eighth of a mg).

Secondly, reducing every two weeks is probably too fast, you may need to wait up to 4 weeks before reducing again. Unfortunately this may prolong the withdrawals, but it may also reduce their severity.

Thirdly, and also unfortunately, the lower your dose gets, thr worse the withdrawal effects at each reduction. So you may have to take it even slower as the dose gets lower.

If your symptoms get worse as the dose gets ,lower, this is withdrawal effects, NOT augmemntation. Augmentation should improve as the dose gets lower.

It's a good idea to think about what you're going to replace the ropinirole with before you actually stop it. The replacement can, (and perhaps should be), started before stopping the ropinirole entirely.

The standard replacement for a dopamine agonist such as ropinirole is an alpha 2 delta ligand, i.e. pregabalin or gabapentin. These take ablout 3 - 4 weeks to start working and may not really help with withdrawal effects.

Alternatively, you can replace ropinirole with an opioid. One advamatage of this is that opioids can help to manage the withdrawal effects.

Tramadol or Codeine are commonly used to relieve withdrawals (in the short term) or to manage RLS, but aren't ideal in the long term.

Low doses of methadone, oxycodone or buprenoprhine can be used for RLS.

Unfortunately, different people have different luck in getting a prescription opioid for RLS, my GP flatly refuses any. Recently quite a few members of this forum have been successful in getting a prsecription for Temgesic (low dose buprenorphine). If you stress the pain aspect of your RLS, you may be more successful.

Some people find that over the counter paracetamol and codeine does help.

You ought to also ask your GP for blood tests for serum iron, transferrin, ferritin, haemoglobin, vitamin B12 and vitamin D.

If your ferritin is below 75ug/L then you may benefit from taking an oral iron supplement. An over the counter one will do. This is not a quick solution it may take months.

Note if your GP just says your ferritin is "OK" or "normal", this is meaningless as normal is anything over 15ug/L.

Here' some info about this

sciencedirect.com/science/a...

If your GP questions iron blood tests or the use of alpha 2 delta ligands or codeine for RLS you can refer them to this web page

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

[jollyjune in reply to Hidden]

Thank you so much for all your help I will certainly give your advice a go. Is it possible to get rid of this awful RLS or do we just have to try to manage it.

[Joolsg]

Manerva has given you excellent advice.

I had a terrible withdrawal from Ropinirole and took tramadol every 4 hours during the last week and I also used illegal cannabis which gave me 30mins sleep after 3 days without any.

[joepublic]

I take Gabapentin to counteract the augmenting but that only worked for about 6 months. Trying opioids next then will attempt reduction of Ropinirole.

[Country]

My worst nightmare is trying to come off ropinirole. Restless leg syndrome does get worse with age and a result I have increased the dose over the years and now am on 5 mg per day. I first started mild restless leg syndrome in my forties. I researched and discovered ropinirole probably in my late fifties but did not request it from my GP till my sixties. By the age of 69 I wanted to exceed the normal maximum dose and my GP sent me to a specialist who came up with some alternatives but allowed me to increase to 5 mg a day which I am still on at 75. I take one mg at 6pm with two paracetamol and then 3 mg with two paracetamol about an hour before bed. When I wake often about 4am I take a final 1mg. I sleep well but have quite a tough time in the early evening if not captivated by a good film, good company or a close fault game of Scrabble with my partner. Sitting in a meeting in the afternoon or evening is out of the question. The cinema or theatre is out of the question unless I can stand up some of the time without anoying other people.

Good luck with you new medication.