I'd be really grateful for any thoughts on remaining treatment options before I start waging war with my GP practice to try Buprenorphine.
I took my last ropinirole tablet in May 2023 (after augmentation after 11 years), and have since been taking 300mg pregabalin (150mg at 8pm, 150mg at 10.30pm), together with 1mg clonazepam to help me get some much-needed sleep. I do think the pregabalin helps somewhat, but nowhere near enough. My max ropinirole dose was only ever 1.5mg - I'm now incredibly glad I was able to manage without going any higher. It still took two attempts to wean myself off.
Looking back at what's changed in the last 12 months, I realise there has been one significant improvement. I'm now free of RLS during the day, and can at least rest in the afternoon. But as soon as I get into bed, the symptoms spring into life, and my nights are the miserable affairs most of you know only too well. I'm still utterly wrecked during the day.
I tried Targinact back in January (thanks to everyone who helped during that time), but I couldn't tolerate the mini withdrawals. And while my sleep consultant has no problem prescribing oxycodone, he's not licensed to help with Buprenorphine. And I know I'll have an uphill struggle to obtain it because my GP practice has it red listed.
In the meantime I've started to wonder whether I've done everything possible to avoid the need for opioids. My main question is about my pregabalin dose, and whether a higher dose might be worth a shot. I have in the past gone up as high as 600mg daily, but according to my diary that was during the augmentation phase in late 2022, and I noticed no improvement or side effects either way.
Should I try a higher dose once more, a year after coming off DAs, in case it was able to reduce the severity of my symptoms (current IRLS score 34)? I suppose it's worth a try while I'm waiting to see a neurologist who might prescribe Buprenorphine.
I know my GP will not have a problem with a higher dose of pregabalin, so it would seem a sensible thing to try at this stage. (I realise I'm probably answering my own question!)
And does anyone else spend every waking hour trying to work out how to solve their RLS? I am consumed with finding a solution, especially when I read about some of the success stories, such as Joolsg etc. It's just so life-limiting, and so frustrating when treatment options that clearly work are denied to suffering people.
I've been drafting a letter to the partners at my GP practice, asking them to reconsider their prescribing policy for those patients for whom everything else has failed. I mention the postcode lottery and plan to attach every research paper coming out of the States. But I'd like to try a higher pregabalin dose beforehand. Is there an optimum dose (I believe it's 300mg), or do higher doses work for some people?
Thanks in advance for your help.