RLS - Pramipexole and CBD oil

[Rls29]

I have suffered with RLS syndrome for 35/40 years or so. After many different medications I remained on Amitriptyline for years. My RLS became much worse earlier this year with severe jerking and very little sleep again. My GP put me on Pramipexole, to be increase from 1 to 3, as needed. I was ok on 3 tablets for a few weeks but then the symptoms returned with a vengeance. I spoke to my GP who said a I could increase to a maximum 5 tablets, and so my prescription was increased. I've since realised I've gone into Augmentation, my symptoms have been dreadful. I'm taking things into my own hands and am slowly weaning myself off Pramipexole (now down to 2 tablets). Two nights ago I had 2-3 drops of CBD oil (500mg). I slept really well the first night (still woke 3 times for the loo, but managed to drop off to sleep again). Last night I took a little more (I find it hard to judge how many drops are going in!) I was awake with a 'very strange head' between 1 and 2am, but then dropped off to sleep again.

Whether or not CBD oil alone will settle my RLS longer term I don't know, but it has certainly had a remarkable effect these last two nights.

[Joolsg]

I'm pleased to hear it's helping. Reduce the Pramipexole very slowly. Sadly, most GPs don't realise how serious RLS is or how dangerous dopamine agonists are. Augmentation isn't taught which is why they mistakenly increase the dose. The top RLS experts in the USA have know for over a decade that instead of increasing, you have to decrease the dose. Amitriptyline worsens RLS for 99% and is on the list of meds to avoid on RLS help sites, including this one.

Has your GP taken bloods? Raising your serum ferritin above 100 can alleviate some of the Augmentation/withdrawal symptoms.

Check if you're on other meds that worsen RLS like sedating anti histamines, anti nausea meds, anti depressants, statins, beta blockers or PPIs.

If withdrawal symptoms become unbearable, ask your GP for an opioid like tramadol or Oxycontin ( short term ).

You will need to discuss alternatives for when you're off Pramipexole. Don't go on another DA like Ropinirole or the Rotigitone patch as they will cause Augmentation as well.

Pregabalin or gabapentin seem to help many or low dose opioids.

Let us know how the withdrawal goes.

Good luck.

[Rls29 in reply to Joolsg]

Thank you so much for your informative reply Joolsg. I should have mentioned I've also just started taking prescribed iron tablets. My ferritin levels were 64, and so my GP agreed for me to increase the levels. I had thought up to 75, though I see many posts here that recommend levels of 100 for people with RLS. I'm also taking Vitamin D.

I've also cut out chocolate the last few days and drink decaffeinated tea and coffee....so hoping a combination of everything will help. I had thought of asking for Gabapentin should things become a lot worse again.

Thank you once again for your help and support. Very much appreciated.

[Joolsg in reply to Rls29]

I'm glad the GP prescribed tablets. Many on here raise levels faster by taking ferrous bisglycinate ( gentle iron) once every OTHER night. Studies on iron dosing every other day attached.The chocolate, decaff also is mentioned a lot but many find they're not triggers for RLS. Everyone is different where food/drink triggers are concerned.

acpinternist.org/weekly/arc...

[Rls29 in reply to Joolsg]

I've been prescribed Ferrous Sulphate 200mg - 1 to 2 daily. However, currently I'm taking just one tablet every other day. Do you think is sensible?

[Joolsg in reply to Rls29]

I do as studies seem to show levels rise more quickly by taking once every other day. It fools Hepcedin which blocks iron entering the blood/body/brain.

[Elffindoe in reply to Rls29]

Ferrous sulphate is a prescribed iron. The dose is too high. Studies which show iron is best taken every other day also show the dose should be less than 60mg.

Over the counter iron is better, e.g. ferrous bisgylycinate.

The main problem with taking oral iron is that the body has a mechanism for limiting how much is absorbed from the intestines. Otherwise you'd get iron overload. There is a hormone called hepcidin which prevents iron being absorbed.

There is a condition called haemochromatosis where people lack this hormone. It is a debilitating and fatal if not treated.

Ingesting iron in doses above 60mg triggers the release of hepcidin which then prevents further iron being absorbed for up to 24 hours.

Hence MORE iron is absorbed if you take smaller doses bi-daily.

Other things to aid absorption.

Take it in the evening on an empty stomach.

Tale orange, vitamin C or folic acid at the same time.

Do NOT take an antacid or magnesium at the same time.

[Elffindoe]

Just ro concur with Jools.

I suggest weaning off the pramipexole (pxl) in steps of 0.044/0.0625mg and no more often than once every two weeks.

Assuming your tablets are the 0.088/0.125mg tabs not the 0.18/0.25mg tabs, the above is HALF a tab.

1.5 tabs for 2 weeks

1 tab for 2 weeks

1/2 tab for 2 weeks.

MOST antidepressants such as amitriptyline make RLS worse. It just depends what you were taking it for. The be left taking an antidpressant long term without being offered alternative therapies is unacceptable. There are alternative meds for pain, but sadly not for chronic pain.

I wonder if and what you were taking before pxl, if you've previously taken any other dopamine agonist (ropinirole or rotigotine) or levodopa then this is part of the problem. You must stop ALL dopaminergic drugs.

As Jools say the standard alternative to pxl is either gabapentin or pregabalin.

You can start taking one of these NOW.

Here are links to sections of the National Institute for Health and Care Excellence CKS (guidance for GPs) on the management of RLS You can show these to your GP.

Section on augmentation

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

Prescribing guidance gabapentin

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

Prescribing guidance pregabalin

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