Introduction

[Asha1918]

Hi I am 73 yo and was diagnosed with RLS in 2017, although I believe I was experiencing symptons 2-3 years earlier. I was prescribed Sifrol in 2019. I am starting to wean myself off it with the help of Dr David Cunnington (originally from Melbourne, but now in Qld I believe) via telehealth appointments. I am a member of the US RLS Foundation and am aware of the Mayo Clinic paper on RLS augmentation etc. It took a long time to get a proper diagnosis (my GP admits she has scant knowledge of RLS). My initial Neurologist Dr Arun Aggarwall in Sydney, actually specialises in Parkinsons and kept telling me I could increase my dose of Sifrol, which, after reading the Mayo Clinic paper, I knew was not wise. He was not open to patient input, so I changed to seeing Dr Cunnington. So far, so good. Having said that, the onset of my RLS symptoms have been occurring earlier, during the afternoon and early evening. I have made an appointment with Dr Cunnington in late January to further discuss. I am currently on .75mg of Sifrol and 300mg of Gabapentin.

[Madlegs1]

Unfortunately you are already suffering from augmentation.

You know what to do!

Get off the sifrol, very slowly and by very small amounts.

Sue Johnson covers it all in her replies to people in the same plight.

All the best.

Have you had your serum ferritin checked-- if not , do get a test.

[Joolsg]

Hopefully Dr Cunningham will prescribe a low dose opioid to settle the withdrawals as you reduce Sifrol further.Keep going. You've done really well to get down to 0.75mg ( which is still way above the max. dose).

The 300mg gabapentin won't do much until around 4 weeks after the last dose of Sifrol.

Withdrawal is hellish but the daytime symptoms usually disappear once you're through withdrawal.

[Asha1918 in reply to Joolsg]

Thank you for the advice. How do I access Sue Johnson's posts? Is she a RLS specialist?