Gabapentin/Pregabalin - Who is actually finding this helps their RLS?

[Felicity21]

There has been a lot of advice on this Forum about A2B Ligands being first line of treatment (?) and I was thinking there must be a lot of people out there who were advised to come off DA's (slowly) and go onto these Ligands. Then I am reading a lot of posts of people whereby these Ligands stop working (whether it is augmentation or not) and they are subsequently advised that "you are a candidate for an opioid".

I have had RLS for many years and have tried everything. What helps me is combination therapy. Apart from 0.5 mg Clonazepam, I take 0.26 mg of Prolonged Release Mirapex plus 2 co-dydramol (10/500) plus 1 high strength Senokot to prevent constipation. This little cocktail works a miracle for me. After my hot bath in the evening, I go to bed and sleep 8-9 hours. The amount of codeine I take is 20mg which is what I would call a low dose opioid. The concern with taking opioids is that it could lead to taking higher doses. However, with my combination there is no such risk. You see the Clonazepam does not work well with high dose opioids and Co-dydramol is a clever combination of codeine and paracetamol (10/500) whereby you can only take 1000 of Paracetamol at a time, which prevents you from taking more codeine.

Augmentation literally means increase, which may lead to symptoms coming back or the medication bringing it on. It also means it is a sign to reduce your medication. As my Neurologist told me, when that happens, you do not need to come off your DA. You could switch to another DA. Augmentation is less likely with 24 hour Slow Release DA such as the Rotigotine Neupropatch or Prolonged Release Mirapex. But the marvellous thing is that in combination with the fairly harmless co-dydramol it works very well. And constipation can be relieved with high strength Senokot.

So I would like to offer hope to all those people who may consider opioids on their own when DA's and Ligands stop working. My concern is when opioids on their own can lead to taking higher doses and higher equivalent levels of morphine.

Take care and good luck!

[Hidden]

Hi Felicity,

Thanks for pointing out that opioids on their own are not the only route to be taken when single first line treatments have failed.

I myself do not take an opioid for RLS and would be very reluctant to do so.

My comment, "you are a candidate for an opioid" reflects my belief that anybody, certainly in the UK is unlikely to be prescribed an opioid for RLS unless first line treatments have failed.

As some support for this, I note that the only opioid licensed for RLS in the UK is specifically for "second line symptomatic severe to very severe idiopathic restless legs syndrome after failure of dopaminergic therapy."

I believe you have found the best solution for yourself in a combination therapy and I believe that combination therapies are accepted.

I'm sure other members who do take opioids may be able to reassure you.

[Jules1953]

Do you also take the 20mg of Codeine with this combination you are taking.

[Jules1953 in reply to Jules1953]

Ok I get it, the Co Dydramol 10/500mg contains 10mg Dihydrocodeine Tartrate and 500mg Paracetamol.