Taking Buprenorphine (usually 4 x .2mg) daily and my RLS is off the scale at the moment. I am at my wits end , it is about 6 months now since I finally stopped the Mirapexin so I don't think it is a reaction to that). I am getting 1-2 hours sleep at night. I take the Buprenorphine at around 5pm and have also tried splitting the dose but wonder if I would be better to take it earlier in the day ?
My last conversation with Dr Murphy was that if I continued to find that the Buprenorphine was not working despite increasing to 6 x .2mg) , he would advise my GP to switch to Oxycodone. I am really concerned about taking that medication so it is not something that I am really keen to do.
He also said that he would support a decision to try medical cannabis but this is also something that does worry me - would I be able to drive etc?
I don't really know what to do, my ferritin is fine following an Iron Infusion.
Any advice would be greatly appreciated.
Many thanks.
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Ced60
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Buprenorphine has a long half life of 25 hours.As I recall, Dr Chris Murphy wasn't sure how to advise you to take them.
Two things.
1.You were on a VERY high dose of Pramipexole for 20 years and you only stopped 7 months ago. So you will likely need the AVERAGE dose of Buprenorphine which is 1 to 1.5mg. You are only taking 0.6mg.
2. You are taking it at a strange time. Buprenorphine pills release most of the active ingredient in the first 11 hours. Buprenorphine takes around an hour to kick in.
So take 0.2mg around 2 hours before your normal 'falling asleep time' and 0.4mg just before you fall asleep.
If that doesn't work within 2 days- ask Dr Murphy for 1mg. I see that he has already advised you can increase to 1.2mg. Dr WINKELMAN'S Opioid study makes clear that many RLS patients on opioids require an upwards increase in the first year.
Your dose is probably too low to cover 20 years of damage from Pramipexole.
You also need to ensure your serum ferritin is above 200ųg/L via iron pills or an infusion.
Simply show Dr Murphy the Mayo Clinic Algorithm and the RLS-UK website. The average doses for Buprenorphine are set out.
Thanks @Joolsg - last time I spoke to him which is about a month ago , he wasn’t sure what the max dose of Buprenorphine was and while I was on the phone did some complicated calculation to compare it to Oxycodone and then said that 1.2mg was the absolute max he would be able to prescribe and he was writing to my GP to say that they could prescribe up to that amount so I will try to contact him with the info you have directed me to . I usually try to go to bed around 10 as I’m up at 5am so I’ll try .2 at 8 and then the rest just before 10 and see how I go
I do hope increasing the dose and changing the timing helps.I don't understand why Chris Murphy says 1.2mg is the maximum he can prescribe when the Mayo Clinic Algorithm shows that the average is1 to 1.5mg and the max dose is 6mg.
I suspect because he only started prescribing it when pushed to do so by members of this forum.
This is why we REALLY,REALLY need UK studies.
I found this limited 2019 study on 7 patients. You can see the dose was 2.5mg. It's a shame that one patient discontinued because of anxiety. I added pregabalin and it countered the anxiety completely.
Hi joolsg, I’ve been on Buprenorphine 8mgs for about 3years and my anxiety has been over the moon ever since and u said that pregabalin really helped. I didn’t know that was possible?
I have never experienced anxiety/panic attacks in my life before taking opioids. So my panic attacks were opioid induced.It depends on what anxiety you suffer.
If it's related to Buprenorphine- then
adding a sedating med can relieve the panic attacks.
Dr Buchfuhrer advised me of this by email.
In my case, taking 50mg pregabalin for 4 weeks stopped the panic attacks. I then reduced down to 12.5mg as it definitely helps my opioid sweats as well.
Did you start on a low dose of Buprenorphine and worked up to 8mg?
That's certainly the highest dose I've seen on here.
Yes I am on the highest dose. I’m hoping this doesn’t change, but I am going to speak to my doctor about helping out with the preagabalin. I’m also induced by the opiate. Thank you dear heart.♥️
Joolsg, I've often wondered why you are splitting your dose, other than the fact that it works well for you? I assume at one point you tried taking the whole dose at once and that didn't work as well? I might understand splitting the dose more evenly (e.g., 10 or 12 hours apart) for those who experience mini-withdrawals (a rarity on bup) vs. a couple hours apart. I find a roughly 12 hour effective period for me, with some residual effect lingering longer. So I can make it through the night taking mine anywhere from 6pm on. When I do split my dose, it's so I can take an afternoon nap. Then I usually try taking half my normal dose at naptime and half before bed. That frequently works, but occasionally I'll get early morning symptoms doing this. You also mention that most of the active ingredient is released in the first 11 hours. That seems a bit different than the active ingredient is released immediately, and its effect last for 11 hours or more. I don't mean to nitpick or get hung up on semantics - I'm just wanting to better understand the pharmacokinetics of bup. I guess this question could apply to any drug - does tylenol release its active ingredient over a 4 hour period, or does its analgesic effect last 4 hours?
I started taking 0.4mg at 9 or 10pm. The next evening, I experienced RLS between 7 and 9pm. Rather than increase above 0.4mg I split the dose.
And it worked. The next evening, I had no RLS.
I simply calculated that the half life is around 25 hours and Buprenorphine releases most of the active ingredient in the first 11 hours. By splitting the dose I achieved full cover when I needed it most between midnight and 9am but the half life was extended to cover the breakthrough that was happening in the evenings between 7 and 9pm.
I now get zero RLS and sleep 8 hours. And keep my dose to the lowest possible.
So I'm confused, I'm understanding, .02mg say at 6AM and again, .02mg at 6PM. Is that what's working for you?
NOTE: I'm seeing my DR. this Friday and want to request Buprenorphine. Currently on 350mg pregabalin (2years) which isn't working for me, before that 1800 gabapentin. Hoping for positive results.🤞
Thanks Joolz , will try it …. I haven’t got an appointment with him (on the NHS) till July , I might try getting a message to him via his secretary or failing that I’ll try to see him privately as I can’t wait that long.
The 5 year results from the Massachusetts Opioid register are out and they show a large switch from other opioids to Buprenorphine. The average dose is 1.2mg.
Show this to Dr Murphy and your GP.
You should definitely increase upwards.
You may do really well on 1 or 1.2mg taken late at night.
Unless you are having bad side effects on buprenorphine, I would really encourage you to stay on it and find the dose that works for you. I don't recall hearing of anyone for whom bup didn't fully control RLS - just people who couldn't endure the side effects and so had to stop.
If you have .2mg tablets, I'd suggest taking .6mg an hour or so before bed. If you experience any symptoms after half an hour or so, take more right away. If the symptoms seem mild, just take an extra .2mg; if they are stronger, take .4mg and see what happens. For me, it takes effect within 30 minutes. So it's easy to add more until you get relief. Even though your doctor won't prescribe for more than 1.2mg per day, you likely have enough pills to experiment for a couple nights to ramp up the dose and see if it works. If, say, it takes 2mg to bring you relief, you will at least know what you need to fight for.
I was on Oxycodone in the form of Targin for 3 months and stopped working for RLS a week ago. I am now on Buprenorphine and although it hasn’t stopped RLS I am going to up the dose and see if it works. I would not recommend going on Oxycodone as it is a full agonist opioid whereas Buprenorphine is a partial agonist. It therefore has far fewer side effects. You get less constipation, does not block your sex hormones and most importantly for me as a cancer patient it does not suppress your immune system. If Bup doesn’t work I doubt Oxycodone would unless on very high dose….just my experience
just to add to the issue I’ve had a nightmare getting hold of a script for .2mcg Buprenorphine today (UK) I tried about 40 pharmacies all out of stock and unable to order , I finally found one that could supply 40 tablets from my 150 tablet script -just a heads up if anyone is due a script soon
If it were me I'd ask the doc to double the dose. I currently take 6 mg/day which barely gets me by. I always awaken with the sensation in my legs & arms that symptoms are returning. I know of people requiring 10 or 12 mg Bupr. It all depends on how badly RLS affects you and whether multiple body parts are involved. Also, size of patient seems to be an important factor. I weight 245 pounds ( 111 kg) and am 5'11" ( 180 cm) tall and very active. We tried getting my RLS issues controlled with 4 mg them 5 mg to no avail. So don't give up on it just yet.
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