just an update on finally weaning off pramipexole after 25 years on it and three years of really bad augmentation. I knew that I was augmenting as had all the symptoms, needed higher dose, symptoms got worse, started earlier, spread to other body parts. The accounts of weaning off the drug were so alarming I kept putting it off until the symptoms of augmentation were so bad, I knew I had no choice. Wish I had heeded the signs and got off this drug much earlier. Followed the guidance on withdrawal, managed it over four months and sought support here on the forum. Those kind, middle of the night messages made such a difference and even at the worst of it, and it was brutal, people here told me ‘keep going’ and I did.
I had cancer treatment that was easier than getting off these drugs and it wasn’t just my experience, my poor husband had to see and hear the awful distress night after night. At later stages of weaning off, got codeine prescribed from GP and it helped a bit. From forum members, found Dr Chris Murphy in Salford, GP agreed to refer me but was a private appt. I have severe, refractory RLS plus PLMD. Again, from others experiences, asked for Buprenorphine orally, as patches can be variable in length of drug action, and we had talked over side effects of the Gapapentanoid class of drugs and that they may not have been effective in my case. Was fortunate enough to have GP willing to prescribe Buprenorphine. Now, the best part of the story, on the lowest starting dose of 200 mcgs, getting 8 hours sleep, no RLS at all during the night. Even more astounding -so quickly-the daytime symptoms from the augmentation vanished, and the relief after years of suffering and lack of sleep is hard to put into words. Having a normal life back that is not dominated by RLS and no sleep is amazing. I appreciate not everyone is able to get Buprenorphine, but I think the low dose opioid route is the one to follow and maybe when we have a large enough ‘body of evidence’ we can effect the changes that mean everyone can access the best drug to treat the ‘Dopamine agonist’ problem that so many of us have experienced. Advice to others, get off DA drug as soon as possible, or don’t take them in the first place, seek forum support when weaning off, you will make it through the withdrawal, and things are so much better on the other side….bit like childbirth, truly dreadful at the time but the outcome makes it worthwhile. My heartfelt thanks to the caring and knowledgable community on this forum and will keep contributing here where I can help anyone else.
Buprenorphine not helping now
Mildly Burning After Withdrawing From Neupro
Tips for tapering off pramipexole? 
Tried everything and have found relief
