Severe rls

[Glasgow44]

I have suffered years rls doc has just put me up to 4mg patch its not working help also tried ropinrole and progablin what next help

[Hidden]

Hi and sorry to hear that the medications aren't working for you.

Ropinirole and rotigotine are both dopamine agaonists (DAs). Pregabalin is an aplha 2 delta ligand (A2D).

If you could give more detail about what medications you've used in the past and what you're using now, it would be possible to give you more specific inflormation which could help.

I often ask people specific questions which would help me to be able to make specific suggestions, but people rarely answer them so I can only give you some ideas to think about. Apologies if you already know what I'm about to write, but people often don't.

As regards the DAs - All DAs cause complications and two commonly occurring are loss of efficacy and augmentation. Loss of efficacy precedes augmentation.

If either of the DAs you've used originally worked but then stopped working, as now, then this is loss of efficacy.

If the response to this has been to increase the dose, this only increases the risk of augmentation.

If the response has been to switch from one DA to another e.g. from ropinirole to rotigotine this might bring short term inprovement. However, loss of efficacy will soon recur and continued use of a DA will increase the risk of augmentation.

Augmentatiion is characterised by -

- symptoms get more intense

- they spread from legs to arms, shoulders, abdomen

- they happen earlier in the day

- they happen quicker after relaxing

Pregabalin can be effective for RLS but it has limitations

- You have to be taking a sufficient dose i.e up to 400mg

- You have to be taking it for at least 4 weeks

- If you take it at the same time as taking a DA and you have augmentation, then it probably won't work

- If you start taking pregabalin and then reduce and stop the DA, then it may not appear to be working during the reduction and for some time after stopping the DA because of DA withdrawal effects.

If you took at least 150mg pregabalin for at least 4 weeks and continued to take it at least 2 weeks after ceasing to take any DA at all AND if necessary increased the dose up to at least 300mg AND it still didn't work, then it's probably not going to work. Otherwise you wouldn't know if it was going to work or not.

When neither DAs or A2Ds work then you have "refractory" RLS. It's generally recognised that the medical treatment for refractory RLS is an opiate. You may be able to persuade a doctor to prescribe either tramadol or codeine for RLS, but neither of these are really potent enough. Seeing a specialist may enable you to get a more potent opiate e.g. low dose oxycodone, methadone or buprenorphine.

There are alternative treatments for RLS which don't involve medication.

The most significant of these is iron supplementation as brain iron deficiency (BID) is strongly associated with RLS.

Although not a direct measure of this a blood test for "ferritin" is useful in indicating if iron supplementation may lead to an improvement in RLS symptoms.

If ferritin levels are less than 75ug/L then you may benefit from taking an oral iron supplement with the aim of increasing ferritin to at least 100ug/L 50% of people with RLS gain relief from symptoms with this level of ferritin. If the right supplement is taken the right way, it may take at least 3 months before any improvement can be expected.

If ferritin is more than 75ug/L or more than 100ug/L and symptoms are still troublesome then an IV iron infusion may be necessary to raise the ferritin level and up to 60% of people with RLS may benefit from this.

Another consideration when RLS is not responding to medication is to look at if there is any aggravating factor making your RLS worse. This could be any other medication you're taking or it could be something you're eating or drinking.

In summary..

Loss of efficacy is very common with DAs such as ropoinirole or rotigotine

You may be suffering augmentation casued by the DAS in which case it should be reduced and/or stopped.

There are several reasons why it may appear that pregabalin doesn't work.

When both DAs and A2Ds fail the next medication to be tried is an opiate.

Iron suipplementation is a treatment fir RLS

Aggravating facators shlould be avoided.

[Joolsg]

If you’ve switched from Ropinirole to the patch and have now increased the patch dose to 4mg it screams ‘Augmentation’. Did your GP discuss this with you? If not, you need to educate yourself by reading all the posts on this site, especially Manerva’s replies.

We’ve all been in your position with Dopamine agonists and many of us have managed to get off them (slowly) & are now much better.

Please read all you can about augmentation and withdrawal and I wish you good luck in getting off the patch and onto a better alternative med. Pregabalin will not have helped if you were taking ropinirole or the patch- it works once you’re off them.