The regulars on this site, and I count myself as one, may be familiar with my RLS story, but for the walk-ins, I will give a brief backstory.
About 3 months ago I successfully stopped using the Neupro patch to treat my RLS. 25 years or more of using a dopamine agonist came to a screaming halt and I was the one screaming. I could not have done it without Buprenorphine. Over a period of 2 months, I transitioned from a 2 mg Neupro patch to 20 mg Buprenorphine patch. For me the result has been nothing short of a miracle. Deep sleep almost every night for the first time in 30 years. I had forgotten what it was like to dream. Quite suddenly a new life had opened up for me. More energy, a better mood. People who don't suffer from RLS may have difficulty understanding what I am talking about, but members of this community know. Aside from some minor burning in my knees and feet everything was hunky dory. Then 2 weeks ago I switched from the patch to the tablet. Mainly because in Brasil, where I live, only the patch is available and it's not cheap. Whereas in the states, the tablets are relatively inexpensive with insurance and I can pick up a 3 month supply when visiting my son in California.
I was doing fairly well on one half of a 2 mg buprenorphine/.5 mg naloxone tablet taken an hour before bedtime. Occasionally I had burning in my feet and knees, but not enough to interfere with my sleep. Then two days ago (I am sorry it took so long to get this point) I woke up in the afternoon from a nap with severe burning in my legs and feet and generally just feeling like something the cat dragged in. This is how I had felt most days before I quit Neupro and it was frightening to say the least. After 3 months of being relatively free of pain, the bottom unexpectedly dropped out completely. I was devastated.
I have tried to pull myself together so I could figure out what has happened. Some might think the burning is a separate health issue from RLS, but I don't think so and neither does my neurologist. In any case, it probably doesn't matter because whatever the cause, the burning disappeared almost completely when I started using the Buprenorphine patch. What I am thinking and hoping is that it is simply a titration issue. At best the patch gives a fairly consistent dose of buprenorphine over a 24 hour period. The tablet on the other hand wanes in strength over 10 hours. If this is correct then 10 hours after taking the tablet I am either going through mini withdrawals or my RLS is breaking through big time. Perhaps this can be corrected by taking a dose every 10 hours or by experimenting until I find the right dose and time to take the tablet so I can avoid waking up feeling like I had been run over by a truck again.
Please, if you have any thoughts about this problem, share them with me. Hopefully, I can figure this out and get back to where I was using the tablet. But if the patch is the best option for me, no matter the higher cost, I will use the patch.
Thanks for reading.
Written by
RiversW
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I use the pills and found that one dose led to breakthrough RLS early next evening.So, I experimented and found that taking 0.2mg at 8 or 9pm and then 0.2 mg at midnight gives me 24/7 cover.
The pills release most of the active ingredient in the first 11 hours.
So, definitely play around with the timing and Try 0.5mg before bed and the other 0.5mg 12 hours later.
It may be a temporary 'blip' as your body adjusts to not having a constant, even supply over 24 hours.
I agree with Joolsg. Do some more playing around with the pills, maybe consider even to cut them into quarters to allow doses several hours apart.
But, if the problems remain, especially when indicative of end-of-dose symptoms, then the patch may be the better option for you. It is for me. And probably because of the constant level of the buprenorphine I get when on the patch, I get by with a lower dose than when I took the pills.
Thanks Lotte. As Jools suggested I plan to play around with doses and the timing of the doses but you are right, ultimately the patch may be my best option. Thanks
Thank you Jools. I plan to play around with the dosing. Hopefully my record keeping with improve so I can actually understand what is working and what is not.
I am not capable of expressing adequately my appreciation for the people on this site who day in and day out take the time to help others who suffer from RLS. Every time I write a post I am overwhelmed by their generosity and kindness, not to mention their knowledge. Thank you, thank you , thank you!
hello sorry I’m not here allot but I was wondering mad legs if the fentanyl patches helped. As I’ve been on them for two or so more years and my rls has all but gone I get the odd night where it comes back. I mention the patches you are using to my Gp and because I thought I could switch as the fentanyl is strong. She said no so I’m still taking 25mg every hour through my my patch to scared to reduce the dose as I’m terrified of the rls coming back. I’d be really interested to know how you got on x
I was on Duragesic Fentanyl patches.. Supposed to last 3 days, but only lasted two. I cut the patches into 3 equal parts and applied one each day. That meant the halflife only had to get me through 24 hrs, rather than struggle to make the 72.
A pharmacist told me that was a common experience (not lasting) and that it was due to my fast metabolism. True! I'm small and hasty!😝
If you are taking the Fentanyl mainly for pain relief, then you shouldn't change. It is a strong opioid.
If you are experiencing breakthrough pain or RLS, it is probably because of the medication running out. Or possibly triggers of some kind.
Thank you for detailing your buprenorphine experience.
I am currently using a 15mcg/hr buprenorphine weekly patch which I supplement (ie top uo) daily with a 100mcg tablet taken about 6pm. I have experimented with both patches and tablets and find that this regime stops my RLS and goes someway (not completely) towards reducing the severe nausea I get with the drug. i still get hot/cold sweats after breakfast each morning and some anxiety which i am trying to combat with a small dose of pregabalin (25mg/day)
I am sure that the "levelling out" of the drug effectivity which patches provide is better than trying to programme a tablet regime. Of course patches have their problems ie life, shower protection and start up time but the peak dose given by a tablet starts the nausea for me.
Finding the correct meds regime is different for each person and I wish you luck on finding yours soon
Davchar, good to read that you found some sort of solution. Is the nausea bearable with this approach? I really hope so. And have you tried (otc) loratadine or cetrizine to help with the sweats?
Thanks your post and support. I have, in vain, tried cetirizine but don't know loratadine? If it is OTC then i will give it a try. Did you suffer from nausea? I would not like to go back to RLS nights but the awful feeling in a morning up to about 1pm is not very pleasant.
Loratadine (brand name Claritin) and desloratadine are non-sedating antihistamines. Like cetirizine, but with a longer half life. They may be prescription meds.
And no, I never had nausea on buprenorphine. I don’t envy you. I still hope you somehow find a way to lessen it.
Thank you so much, RiversW, for sharing this, so interesting and helpful to read about how the patch helped now just with stopping RLS, but indeed changed your life. RLS doesn’t just interfere with sleep, it ruins thoughts, actions, feelings, decisions, dreams and daydreams.
Thank you, and I hope you get current issues sorted. Thank heavens for this forum. X
Thank you for sharing that. I am going through withdrawal from mirapax. It is pure hell. I have never cried so much and slept so little. You give me hope. I plan to ask my dr. for buprenorphine today. Hopefully she agrees.
Please do ask your doctor for Buprenorphine. I went through withdrawals twice. The first time was pure hell! The second time with Buprenorphine wasn't a cake walk, but not nearly as awful as my first. Everyone responds differently to these meds but I think there is a good possibility that Buprenorphine will help you. A lot! I hope so, I really do. Many on this site know exactly what you are experiencing and how difficult it is both physically and psychologically. You will make it to the other side and will be able to look back and help others get there as well.
I take 1/4 of a 2 mg. Subutex tablet nightly. For the first three months , I was a bit “ brain fogged “ until 2 in the afternoon, but that has passed. I do not experience any mini withdrawal at all. I do get hot flushes a few times a day, and sweat way more when exercising. I find Lume wipes work well for that. Since I only have RLS at night, the patch doesn’t make sense to do. Just be ultra careful with mouth hygiene and get regular dental checkups.
I started on a 1/4 tablet at bedtime and until last week when I woke up from a nap feeling like I had been run over by a truck (a big truck) that dose seemed to be sufficient. Now if I want to be symptom free, meaning no burning in my feet or legs, I need to take 1/4 to 1/2 of a 2 mg tablet every 6 to 8 hours. Maximum dose according to my neurologist should not exceed 2 1/4 tablets over 24 hours. Consequently, I don't take any buprenorphine during the day and just deal with the burning until around 6 in the evening when I take 1/2 of a tablet and hope it does the trick. Interestingly, when I woke up in such a terrible state last week ( run over by the truck) I took a 2 mg tablet. Over the next 30 minutes I could feel the buprenorphine starting to work until after an hour the pain was completely gone.
I have not come to firm a conclusion yet but it seems I was doing better with the patch where I was getting the medication continuously over a 24 hour period. However, the problem with the patch is that in Brasil they are expensive and also, it's difficult to know precisely how long they are effective. For me, I have never had a patch last for 7 days. At the most 5 and sometimes they were kaput after 3 or 4 days. Unfortunately the only way find out is to experiment and that means risking the onset of RLS symptoms.
Teakabeagle, can you elaborate on the dental issues that can be caused by the tablet. I have read about this issue before but I would like to learn more. I ask because I am wondering if this problem could be avoided entirely by just swallowing the the tablet. My pharmacist has told me swallowing the pill is fine as long as it doesn't upset your stomach.
I am happy to hear that the brain fog has passed for you. So far it has been a problem for me in the morning. However, I am also taking 200mg of pregabalin. The brain fog may be caused by that it's difficult to know at this point.
I appreciate you taking the time to respond to my post. It is always helpful.
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Buprenorphine - paired with sleeping tablets, UK
Sleeping tablets to offset Buprenorphine sublingual side effects.
