Back for advice … sleep deprived!

[VAF61]

Hi, I wrote on here when I joined this community. Circumstances have changed but RLS hasn’t other than to get worse. I was put onto Pregabalin which was increased to 225mg to take at bed time. My iron levels are serum ferritin 211ug/l. Serum iron level 17.5 umol/l. I have been taking Ferrous sulphate 200mg for the last year. I also take otc Magnesium and vitamin D. I have used the magnesium oils on my legs and the other suggested relief options but absolutely nothing has worked. I recently had posterior medial branch blocks in my spine which my GP thought would also help RLS but she didn’t accept it was completely separate and it hasn’t changed a thing. An advice referral to the Neurologist has come back now saying

either 'Ropinirole and Pramipexole are helpful but can cause augmentation. Please visit rls-uk.org/medical-treatments . you may choose what is the best option for the patient. However, management is likely to be challenging';

I have absolutely refused to even start taking these for obvious reasons and I am caught between increasing Pregabalin or coming off it as it is not helping me.

Every single night as soon as I relax in bed my right leg starts until I get up and stretch it out for about 45 minutes. Back in bed left leg starts … repeat process and right leg starts once more….. what do I do next please…. Advice on here do much appreciated as I am frustrated with my own GP and neurological input!

I am British and in the South East… 63 yrs old with RLS starting in teenage years but worsened in the last 10 years.

Can the real RLS experts help please 🙏🏻

[SueJohnson]

You can increase your pregabalin by 25 mg every couple of days as the usual effective dose is 200 to 300 and the usual maximum is 450 mg. If you get to that point and it still doesn't help then since you haven't ever taken a DA you could try dipyridamole. Post back here at that point and I will give you more information on that. If even that doesn't work then a low dose opioid is the answer.

Are you taking any medicines or OTC supplements. If so I may be able to tell you if they are safe for RLS and if not possibly give you the names of safe ones. Because having never taken DAs it is strange the pregabalin isn't working.

[VAF61 in reply to SueJohnson]

Hi Sue, thank you for your response … I will be going back to my GP with this information and hugely appreciate your advice on this!

[pianoplayerPLMD]

Your experiences sound very similar to mine: I found Pregabalin no use at all, along with a lot of other medications. Although my GP is trying his best in the end I sought help from private sleep consultant at Spire Clinic in Cardiff. He suggested I took Clonazepam, which I now take at 1mg per night and it has made a huge difference. I still get the night jerks and have to get up and walk around for half an hour, but the quality of my sleep between these times is transformed.

[VAF61 in reply to pianoplayerPLMD]

Thank you so much for your reply to me, this all helps me to either think of where to go next for help or suggest to my GP, as she is trying to help but doesn’t get this !

[Joolsg]

Interesting that he has referred to RLS-UK.Treatments listed include opioids, as per Mayo Clinic Algorithm.

If increasing pregabalin doesn't help, your next step would be an opioid.

Codeine, tramadol and Oxycontin are all short acting opioids and so don't work for many of us. That leaves the long half life opioids - Buprenorphine or methadone.

Unfortunately, Buprenorphine is red listed in many areas so you will struggle to find a GP to prescribe it without a 'shared care' agreement with the neurologist.

[snoemata in reply to Joolsg]

there are extended release formulations of codeine or oxycodone out there. not in the UK? ps: and tramadol must be avoided anyway.

[Joolsg in reply to snoemata]

Oxycontin is extended release BUT it definitely does NOT last 12 hours. The Dopesick docudrama explained that is how the opioid crisis came about. The pain relief wore off and patients needed more. Oxycontin only lasts 4 to 5 hours. But there are people on here who do well on Oxycontin every 12 hours. But many need to take it every 4 to 6 hours.Tramadol works for many people. There is ONE study that mentions augmentation but the jury is out on that.

The problems with many opioids is their short half life. That causes rebound symptoms - RLS- for many patients. That's why methadone and Buprenorphine are so effective. They have a 25 hour half life.

[snoemata in reply to Joolsg]

no, please stop mentioning tramadol. the potential for augmentation is enormous and therefore not worth a try. and if oxycodone 12h extended release (we have many generic brands here) does not work at least 12h for some people, there may be other factors at play. in addition, with any opioid, i recommend memantine, 10-20mg 1-2x/week to counteract some typical long-term side effects of these goddamn opioids.

[Joolsg in reply to snoemata]

As I stated above, tramadol has been reported to cause augmentation in ONE study, involving ONE patient.There need to be more controlled trials, followed up over 4 or 5 years.

movementdisorders.onlinelib...

I personally think tramadol may be problematic lomg term, but many people use it successfully. And it can help during DA withdrawal.

RLS-UK website does point out that tramadol MAY cause augmentation.

And I can only speak from experience on extended release oxycodone. It caused opioid rebound for me.

And many others on here report the same. This article on the '12' hours is interesting. Many patients taking ER oxycodone reported that it didn't last 12 hours.

latimes.com/projects/oxycon...

[Yorkie111 in reply to Joolsg]

I have a prescription for Buprenorphine that I have not needed yet tho I’m sure I will soon. I’ve seen the term “25 hour half life” several times but don’t know what it means. Please explain. Thank you for all your helpful advice.

[Joolsg in reply to Yorkie111]

It means the length of time for half the medication to leave your system.

[VAF61]

Thank you so much for your reply, it’s all very much appreciated.

I’m so unsure of which way to turn next!

[Islay9]

I increased to 450mg pregabalin and it’s made a HUGE difference in my sleep.

I was also taking 30mg dihydrocodeine which is the only thing that has ever “switched off” my legs.

However I was still getting breakthroughs in the night. But it was such an improvement to before.

I mentioned this to my neurologist recently and he prescribed me 60mg modified release dihydrocodeine.

Early days but it’s really helping. So I would recommend you increase your pregabalin (I did mine a bit quick so may have not needed this much but here we are) and add in dihydrocodeine x

[VAF61 in reply to Islay9]

Thank you so much for your welcomed advice! It’s very much appreciated