hi, I’m due an appointment with consultant next Thursday , my RLS are severe and have recently been suffering anxiety and depression, my mood has now lifted , and now I need to get my RLS under control , as I feel that will help me cope better with the anxiety , I have in the past augmented on pramipexole , gabapentin and pregabalin affected mood , so not able to take them, I now taking 75mg of codine every night .
last appointment I was prescribed beta blockers ( side affects too bad ) , I stopped taking them , also I was prescribed trazodone , which I read can help RLS, unfortunately it made mine so much worse , to the point I couldn’t sit long enough to even have a wee , so I’m now going to ask if they would prescribe Buprenorphine , I would like enough information so I can be armed ready , I am aware that here in UK many people have trouble getting their Drs to prescribe this drug .
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Kiram
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BTW, I was about to ask you about your ferritin levels, and looking back note that SueJohnson wrote about this and testing in her reply to your first post. Increasing ferritin levels help a lot of sufferers: did you follow up on this? She also mentioned dietary and medication triggers which a lot of us suffer from...
Thank you . They run blood test at my last appointment so should get results this time , I am aware of medication that affect RLS, only thing I take is levothyroxine which I need and always take very early in morning , I was looking for information on dosage etc ,
According to that Mayo table, the starting dose in the US is generally between 0.5-1 mg but I believe that Joolsg is on 0.4 mg which completely controls her RLS. Jools also takes some other meds to control the side effects of the buprenorphine: I'm sure that she'll be along later to give the full info.
Depending on how knowledgeable your consultant is - and few are unfortunately - they may try to follow NICE guidance. This talks about dopamine agonists and gabapentinoids - which I know you've tried - but doesn't mention low dose opioids. So go armed with the info from that pinned post and hopefully further advice from Jools!
If Buprenorphine is red listed in your prescribing area, the GP cannot prescribe. We have had patients refused Buprenorphine by their GP even when tje neurologist expressly recommends/directs them to prescribe it.If that is the case, you have to ask the consultant to issue/write an NHS prescription on a green prescription form so you can get the medication from your pharmacy.
If Buprenorphine is NOT red listed, hopefully your GP will agree to prescribe, but some still refuse, mainly because they don't understand it, have never prescribed it for RLS and they have been taught that all opioids cause addiction and tolerance.
So, show neurologist and GP the Massachussets Opioid Register which shows RLS patients do not develop addiction or tolerance and they stay on the same low dose for years.
I also attach Dr Berkowski's Buprenorphine study. It's not gold label trial standard, but it shows it is effective.
Also, the many people on this forum who take Buprenorphine can attest to its effectiveness. ( But there are some who say a bar of soap helps them, so neurologists will discount our anecdotal evidence).
Pills are usually better for RLS as they release most of the active ingredient in the first 10/11 hours, so taking a pill around 9pm would cover a whole night's sleep. Buprenorphine then continues working for the whole of the next day. Its half life is 25 hours. We don't get mini opioid withdrawals, unlike with Targinact/Oxycontin.
I take 0.2mg at 9pm and 0.2mg at midnight. I do this because taking 0.4mg in one dose led to breakthrough RLS at 7 to 8pm the following evening. Taking 0.2mg at midnight extends the effectiveness and keeps my dose low.
Claire takes 0.2mg and it completely covers her 24/7. Others need higher doses, around 0.8mg. Start with 0.2mg and increase by 0.2mg a night until you get 24/7 cover.
Be prepared for nausea. Mine was extremely severe for 7 to 10 days. I used medical cannabis. Zofran will help to reduce it as well. I developed opioid anxiety/panic at week 4, but was prepared, as I developed it on Oxycontin. I added 50mg pregabalin and it stopped the panic attacks. I have now reduced that to half a 25mg pill.
I suspect you may need a 15mcg patch. But, they're clearly trying to find the lowest effective dose ( which is good) but you are left suffering in the meantime. That's why pills are easier. You can add 0.2mg a night until it covers the RLS. But, stay strong. You will get there.
Several of us have used multiple patches and even cut a patch in half - all with no issues whatsoever. Using multiple patches may not be ideal, but it definately should work fine, especially while you are experimenting to find the optimal dose.
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