What is going on ?

[Coopersmum]

It's a month since my last post and I am desperate. I am back at work and I'm ok during the day, but on a night the pain is as bad as during augmentation. I'm now taking 300 mg Pregabalin and all night from about 9.30 till about 1am I can't sleep. My legs are painful, jumping and sometimes unbearable. I am booked in for another blood test next Monday to check my iron. Why are things so bad, I thought it was supposed to be getting better ? I feel ridiculous talking to my boss after everything I've been through and 6months on the sick my RLS is back to where it was months ago. I'm so frustrated and upset, is this ever going to end ?

[Baldrick123]

Sorry to hijack this thread but not sure how to start a new one. I am prescribed 25mg of Pregabalin as a supplement to 2mg Rotigotine patch (and yes, people on this forum have told me to get off this patch ASAP). I am travelling to Rhodes for a holiday in 2 weeks. Pregabalin is a controlled drug in the UK and in Greece. What do you do when travelling with Pregabalin to avoid being arrested by the Greek authorities?

[Joolsg in reply to Baldrick123]

Take a copy of your written prescription and a letter from GP confirming you are prescribed it for a medical condition.

[Gmc54 in reply to Baldrick123]

You start a new thread by clicking on the word 'write'.It has a blue background, and on iPad it is in the right hand side. Not sure where it will be on a laptop, but I assume in the same place.

[SueJohnson in reply to Gmc54]

Yes it is in the same place on my laptop.

[Joolsg]

Sadly, after years on dopamine agonists and augmentation, dopamine receptors can be permanently damaged.There are research studies that confirm gabapentinoids do not work for many after dopamine agonists damage.

I am one of them.

However, in your case, it is only a month since you stopped dopamine agonists abd started pregabalin. Withdrawals can last months.

However, you are trying to work and need sleep.

Many of us are retired and can wait longer to see if pregabalin will work. You cannot.

Your RLS is now refractory and you will have to ask your GP for a low dose opioid.

The most effective is Buprenorphine, but getting it in the UK is extremely difficult.

In some areas it is red listed so only a neurologist can prescribe and monitor. But some members report that their GP surgery still refuses to prescribe.

In other areas where it is not red listed you may have success.

Alternatively, Targinact, a combination of Oxycontin and naloxone is licensed for RLS in the UK. However, again, many GPs refuse to prescribe it. And many members report it doesn't cover RLS if taken twice a day. I'm one of them. Oxycontin is suppposed to last 12 hours so you take it twice a day. But it lasts 4 to 5 hours at most and then causes mini opioid withdrawals, the main symptom of which is RLS.

To conclude, you can stick with 300mg pregabalin and hope the dopamine agonist withdrawal will settle in a few months OR see GP now and explain you cannot work properly on so little sleep and ask for Buprenorphine. If he refuses Buprenorphine you can ask for Targinact as it's licensed for RLS, but explain that many RLS-UK members report mini opioid withdrawals if it's taken twice a day and that you would need 5mg prescribed 4 or 6 times a day.

Average dose buprenorphine in UK for RLS is around 0.6mg. Average dose of Targinact is between 20 and 30mg.

If your GP doesn't understand low dose opioid use for RLS, direct them to RLS-UK website and relacs.com.

Have you raised your serum ferritin above 200ųg/L via pills or iron infusion? That can really make a difference and is first line therapy. But again, years on dopamine agonists can damage dopamine receptors and we need functioning dopamine receptors to uptake iron in the brain.

[Coopersmum in reply to Joolsg]

Thank you for your honest reply. I guess I need to just play the waiting game in the hope that my dopamine receptors are still repairing themselves. It will be interesting to see my iron levels as after the iron infusion they rose from 28 to 236.

[Oscarcat63 in reply to Joolsg]

Joolsg: this whole 'red listing' business seems to be totally cruel to me !Yes I get that there always were and always will be people who abuse opioids (for whatever reason), but F@#$ me: how many people DON'T and why punish them ?

Arrgh

[Joolsg in reply to Oscarcat63]

I scream with frustration every single day.UK doctors just refuse to listen to the suffering. They keep prescribing Dopamine agonists and refuse opioids.

Complete and utter madness/negligence/ignorance.

[Islay9]

On top of 450mg Pregabalin, I take 30mg dihydrocodeine.

It doesn’t last all night so sometimes need another one but it definitely helps me get to sleep.

You might be able to get that from your GP easier in the meantime? I wasn’t on DA’s so don’t know if it will be different, but might be worth a try.

[Coopersmum in reply to Islay9]

Thank you so much Islay9 I will certainly speak to my GP, she is calling on Tuesday. At this point I am willing to try just about anything.