Hi all. I need a bit more advice please! Today I received my prescription for Buprenorphine tablet's and they are 400 microgram Sublingual tablet's, sugar free. 1 tablet to be taken 3 times a day for pain and ' spasms ' ! Unfortunately, the Dr. rang me when I was trying to do a short walk in our small woodland but I get very breathless after the lung cancer misdiagnosis so didn't ask him what I should! This has taken week's and was delayed because yet again, the Pain Clinic made an error and when they wrote to my Dr. to , eventually, give ' permission ' for me to have the tablet's instead of the patch, they forgot to tell him how much I should be prescribed! Anyway, my question is, is this going to be enough for the RLS ? I'm on 20 mcg Buprenorphine patch which has driven my skin mad and marked ! Chris did give me some advice but I believe the amount I have been given is less than the amount he suggested. I changed my patch yesterday because my skin underneath is so red and blotchy and I had scratched so hard that the patch had started to come off . Last night was a complete nightmare with my leg's kicking and so painful. When I can't sleep and have to get up my fractured vertebrae become even more painful , so, today I had to stay in bed. My leg's have eased a bit now and I'm getting ready to take off the patch and start the tablet's but I'm scared. Any advice would be appreciated....again !
I do think about you all and have been following the news regarding the struggles with trying to get the medical profession to learn more about this awful condition. Jools you are amazing. Will write more on that another time when I feel a bit better. Do I take the patch off now and take the tablet straightaway and will it be enough to keep the RLS at bay ? Thank you .
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Danni54
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20mcg patch releases 20mcg an hour, so over 24 hours, you receive 480mcg or 0.48mg.They are not exact equivalents as the pills release most of their effectiveness in the first 10 hours.
So, start with one 0.4mg pill tonight and see how it goes. If the RLS starts in the night, take another half a 0.4mg. Use a pill cutter.
I split my dose by taking 0.2mg at 9pm and 0.2mg at midnight.
But 0.4 to 0.6mg will probably cover your symptoms and as the pills have a half life of 25 hours, you only need to take them at night, not during the day.
Thank you Jools. I don't know why but I kept the patch on last night and am going to start the tablet's today but for some reason, last night was awful and my leg's were so painful and dancing! Even this morning they were still awful. I have a very bad cold or Covid so maybe that had something to do with it but today I'm just exhausted! I will take the pill's and see what happens tonight! Thank you, again, for the advice. Just to let you know that I have been in contact with some Surgeries here but no response. I will let you know what happens. Great that neither the idiot Pain Clinic or the Dr. advised me how to take the pill's although I asked but he was more concerned that I might overdose ! Never have and wouldn't put my husband , family and friend's through that! Take care please.
I would take your first pill around 7pm tonight, so it takes effect to cover early evening symptoms that will start as the patch wears off. Then keep half a 0.4mg pill by your bedside table to take if RLS wakes you. As Lotte says, you can adjust the dose and timing to find what works best for you, but take them in the early evening and night.
Will do Jools. Thank you, yet again! I don't know why the last 2 night's have been so bad with my leg's break dancing again! It's exhausting isn't it?! I see you are battling on. Will let you know if I get any replies to my email's begging medic's up here to realise that this is a horrendous condition and to , please, take more notice of us and the advice which is out there. Won't hold my breath though!Hope you are alright. Please take care and I don't know what I would do without you and other's and this Forum is the support I need and I appreciate it SO much.
Thank you Danni,I often feel like giving up and then some poor new patient joins the forum to say they're suffering augmentation and their irresponsible GP has put them on dopamine agonists in 2021! The MAYO Clinic Algorithm was released then and the link to low brain iron & the immediate improvement after iron infusions has been known since 1953.
It is a medical scandal and makes my blood boil.
It would take around 3 or 4 hours to teach GPs everything they need to know to start treating RLS effectively. But the RCGPs and ABN refuse to change.
But, if we keep chipping away, one GP surgery/hospital at a time, we will eventually be listened to.
Stay strong, there is hope and if you get on the right treatment for you, it can be life changing.
I'm keeping everything crossed that tonight will be RLS free.
I am so, ridiculously emotional and you have made me teary but only because I love the way you care so much about us all ! Thank you is so inadequate so I'm sending you a big hug . I have put the first tablet under my tongue...ugh ...a bit ...but I, really, hope that it works ! I have the half tablet ready just in case ! I am horrified at the attitude of my own Dr.s never mind other's that I have written to. If I were a medical person I would be so interested in learning about RLS and trying my hardest to find a ' cure ' or fight hard to help people who are suffering so badly . You would think that they would like the challenge! It's hard enough to cope with this vile Syndrome but having to fight like hell to be heard and understood and get the medication which is our right is downright cruel!
On my high horse now ! Thank goodness for people like you for fighting for us. I will let you know what happens with the tablet's and I am going to email a Neurologist I spoke to a few year's ago who works in our hospital and he was, back then, very kind and caring. I was diagnosed then with an essential tremor in my right hand....not great when dishing up spaghetti!! Will let you know what he says...if anything! I asked my Dr. to refer me but ...nothing! I will stay strong although this has almost defeated me but I wouldn't have got through the lung cancer fiasco if I wasn't stubborn....too stubborn I've been told ! You must be too ! My friend with MS is coping with a lot but she, also, is stubborn. A stroppy little madam but she is so brave and I love her dearly because she is so brave. 10 year's younger than me and has progressive MS .
Take care please and I will be back!
Just to add....my leg's are feeling a little better...after 1 tablet! Wow! Sending a big hug . All the very, very best, Danni x
Hi Jools. I know that I'm a pest but I started the pill's, took 1 yesterday morning, then 1 last night at 9 . I have to take Lansoprazole so take 1 , 2 hour's before taking the Buprenorphine. I found the 2 yesterday was too much although I did sleep. Didn't take a pill this morning but started to feel really weird and my leg's started to go and I had to lie down because I felt woozy so at 1 p.m. I took ½ a tablet and that has helped though I'm still really tired. I plan to take another 1 at 9 . When you first started to take the pill's did you struggle until you found the right balance. I suppose I didn't expect to have such a strong reaction having been on the patches and it's such a relief not clawing my skin. The tablet's are helping my leg's and I so hope that I can keep taking them . I think back to when my Dipipanone and Cyclizine were stopped so abruptly and I still can't believe that nothing was put in place to help me through the withdrawal. The medical profession have let me down so badly for most of my life. I will , always, be incredibly grateful to my Thoracic Consultant for ' re-finding ' my lung tumour but I should never have been left for 15 month's with a tumour on my lung and no treatment because that's when my body fell apart . Since the Lobectomy I have been, repeatedly let down and this RLS is so awful that it really affects me emotionally and the medic's just don't seem to care. It puts quite a strain on a marriage too .
Sorry to rant... again, Jools ! It's a down day ! I really hope that you are O.K. Please take care.
Yes, I really struggled for 10 days. I started on 0.8mg at night. I slept 8 hours with zero RLS for the first time in 10 years. But- I had severe nausea and my heart was racing. I couldn't move off my sofa as the nausea was so overwhelming. But, I was determined to make it work and found a solution for nausea ( cannabis) and racing heart ( cetirizine and pregabalin).So I would adjust dose and timings to suit you.
If you're on 0.4mg pills, try 0.4mg around 3 hours before bedtime and half a 0.4mg just before bed.
Taking a pill in the morning will make you very, very sleepy and you shouldn't need to take a morning dose as the long, 25 hour half life should cover morning symptoms. So 1½ pills at night should work well for you and avoid that woozy feeling in the day.
If 0.6mg doesn't cover you for 24 hours, take 2 x 0.4mg in the evening, 3 hours apart. But I'm sure 0.6mg will di the trick.
And allow yourself to be upset. It's normal, especially after what you've been through.
I've ALWAYS cut the pills and they work fine. So has Shumbah.
It will take about a week to find the right dose and timing, but try to avoid taking Buprenorphine pills in the day as they start to work within an hour, and release most of the dose over the next 10 hours. RLS doesn't tend to happen in the daytime. And Buprenorphine pills in the day will cause too much tiredness.
Thank you Jools. I did think the change from patches to pill might take a while so I will do as you suggest and persevere. I get a bit scared now because since the allergic rash from the antibiotics has left marks all over my lower leg's and they are going white . When the RLS is really bad then my toes really hurt! What a wreck.I will never understand why medic's and Pharmacist's don't know about dosage or give information. I know the leaflet is in the packet but you have described, exactly, what I am going through. I keep wondering whether it's an age thing when they show no interest!
Take care. Will , no doubt, let you know what happens but might leave you in peace till after the weekend.....no promises! Thank you again. 🧚♀️😇 🫂
Fingers crossed tonight goes better. As doctors aren't taught anything about RLS, they are also unaware of the treatments and how to prescribe them. And Buprenorphine is so new in the treatment of RLS, that it is trial and error. If the medics and hospitals could do trials, we'd get better evidence and results. The patients speak from experience, so we're better placed to say how the meds work most effectively. Madness, but we have no choice.
I have been on the pills and have switched to the patch. My RLS is already controlled at low doses, but it may serve as a comparison. I was on a 0.2mg sublingual pill and that worked well, then I got switched to a 5mcg/h patch which also works well. If this conversion holds, you would need two 0.4mg pills to cover your RLS. However, do as Joolsg suggested as the sublingual pills (don’t swallow!) work quite fast (after 20-30min or at most 60min). So take one pill earlyish evening and top up with another when the RLS symptoms appear. Play around with timing and dosing, but save them mostly for the evening and night. I assume your symptoms are mainly in the evening and night, or do you also have daytime symptoms?
Hi Lotte. Thank you for letting me know about your experience and for the advice. First tablet this evening and I keep the pill's by my bed so if my leg's go bonkers again then I will try a half. As you say, I will have to see what happens and don't want to take 3 a day. I have severe pain from fractured vertebrae and adhesions and Diverticulitis in my stomach +++ ! Just a wreck really! My body just fell apart because of cancer misdiagnosis and it's been hard going but the RLS is a complete nightmare for so many of us .I hope you are alright. Thank you again and please take care. All the best.
I started taking 5mg Buprenophine patch called Norspan 4 years ago and the same as you, my skin was red raw from the patch after 7 days. They have improved the Norspan patch now so no skin problems since. Not sure if you can get the Norspan in UK. I am in Australia.
Hi. Thank you for your reply. I'm not sure whether we can get Norspan patches in Scotland. I will look into it although I'm going to take my first tablet tonight having battled to get them. Like you my skin is red raw so I pray that the tablet's will help. Thanks again and take care.
I take 0.2 sublingual buprenorphine tablet. One tablet at 10 pm, along with low dose gabapentin.I have found with all these low dose tablets for RLS that you must start on the lowest dose & gradually build up if necessary
Thank you for that. I am allowed 1 3 times a day though the Dr. has asked me to try to stick to 1 at night but I am going to see how I get on tonight and will take my first one at 10 as you suggest. I can't take Gabapentin or PreGablin as I had a bad reaction to both. I am a bit nervous but I can't keep going with the patch as the irritation is pretty severe. Thank you again. The support and advice on this Forum has been and is amazing and has helped me so much, physically and emotionally.
This forum has been the best thing that happened to me. To talk to people who actually understand.I had a bad reaction to pregablin but funnily enough am fine on gabapentin.
Me too. I'm so pleased that Gabapentin helps you. To have this for 40 year's is just mind boggling. I was on an Opioid for 30 year's off and on for pain with Endometriosis and then adhesions from ops and I think that kept this at bay until Dipipanone was , abruptly, stopped last year. One day I was on them, the next day...nothing! No programme put in place for me! Then the RLS started and I thank God every day for this Forum because people here saved my life and my sanity because nobody else understood what was happening to me .Take care of yourself and I hope you have no more sleepless night's!
Hi Danni, just reading this reply of yours. If you stopped an opioid suddenly after taking it for a ling time, your RLS could well be opioid-withdrawal. If so, you shouldn’t really treat it, but let the withdrawal settle. If it is too much, re-start an/the opioid and reduce very gradually. In that way you may not or only for a short time and hopefully only mildly experience RLS.
Or did you have RLS before? And does it run in your family? I hope not. Withdrawal-RLS is the better option, as it will be transient.
Hi Lotte. Unfortunately RLS does run in the family. The Opioid withdrawal I went through was over a year ago and I have had mild and periodic RLS all of my life. I had Campylobacter last year and while in hospital, had an allergic reaction to antibiotics which the On Duty Dr. ignored and he sent me home. It was after that that the RLS started to get worse and then out of control but the only help and advice I have had has been from people on this Forum and I have Googled a lot about this condition and discovered that an allergic reaction to antibiotics can contribute to RLS . It's been a battle to get the medic's to listen and give me Buprenorphine but I wouldn't have known to ask for that without the advice I have had here.Thank you for taking the time to reply to me and I hope that you are managing to sleep and enjoy life.
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