Buprenorphine not helping now - Restless Legs Syn...

Restless Legs Syndrome

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Buprenorphine not helping now

Miss_E profile image
15 Replies

I had good results with buprenorphine when I first started about 3 months ago Taking 1/4 of a 2mg sublingual and was told I could take a tiny more if I needed. But I am not sure what the max can be. It varies with reading posts. It's overwhelming and confusing.

I am now off Sifrol, as I was weaning off a 1/4 table every two weeks, rls was kicking in a little with the odd jerking each time I weaned off. Thinking that was part of coming off Sifrol. This was happening while taking the buprenorphine.

I've not slept well for at least a week and hit with rls hard again each day. I see my new gp Tuesday. I finally found a good chemist that will fill the script for buprenorphine. I've read with most posts take .2 or .4 tablet, this seems much easier to cut in halve and for preferred dose?

What is the max I can take with buprenorphine to stop this or is it withdrawal and have to endure this phase. Why is the buprenorphine not helping me now. I hope I am making sense. I'm so tired, hit with fatigue, having a few one hour shifts of sleep each night, the rest I'm up during the night. Can't sit for too long, especially late afternoon and evenings, having to stand for most of the time.

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Miss_E profile image
Miss_E
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15 Replies
SueJohnson profile image
SueJohnson

According to the Mayo Clinic Algorithm the usual effective dose is .5 to 6 mg.

Miss_E profile image
Miss_E in reply toSueJohnson

Thanks Sue, this info helps.

Madlegs1 profile image
Madlegs1

If you are still coming off the Sifrol, then withdrawals will continue.

The buprenorphine may help but maybe at too high a dose for your script to maintain.

It will get better eventually.

Many people have been through this and come out the other side.

You can do it.

Keep strong.

Miss_E profile image
Miss_E in reply toMadlegs1

Thank you. My last Sifrol was taken two weeks ago (weaned off slowly by 1/4 less each fortnight) Your words are encouraging.

Joolsg profile image
Joolsg

Buprenorphine can help reduce the hellish withdrawal from Sifrol, but it won't completely mask the severe withdrawal.Withdrawal lasts a MINIMUM of 4 weeks from the last dose of Sifrol and it can take months for your brain to recover.

So, try to be patient as it's better to keep the dose of Buprenorphine to the absolute minimum.

In around 3 weeks, I'll bet your current 0.5mg dose does start to cover you 24/7.

Miss_E profile image
Miss_E in reply toJoolsg

Thank you Joolsg, I hope my withdrawal is for the minimum 4 weeks. What happens if I increase the Buprenorphine? What do you mean for my brain to recover?

Joolsg profile image
Joolsg in reply toMiss_E

Years on dopamine agonists causes permanent damage to our dopamine receptors. Some people are NEVER able to stop taking them as the damage is too severe. That is rare, but the damage is real and the dopamine receptors need to adjust to the dopamine 'hit' they've been receiving.The top experts think that this is the reason iron infusions and gabapentinoids do not work for so many RLS patients.

Most people suffer weeks and months of hellish withdrawal from Sifrol and dopamine agonists, so you have escaped that. But you will have a rocky few weeks until your dopamine receptors settle and stop screaming out for their 'hit' of dopamine from Sifrol.

If you increase Buprenorphine now, it may help cover the increased RLS, but you will then be on a higher dose than you really need.

If you can't bear the withdrawals, increase Buprenorphine slightly, by 0.1mg at a time.

And then, after 2 months, you can slowly reduce again.

It's always best to stick to the absolute minimum dose that covers your RLS.

Shir_11 profile image
Shir_11

I take half tablet around 4pm and the other half around 9pm and works for me. I have been on the same dose for 4 years.

Miss_E profile image
Miss_E in reply toShir_11

Something to look forward to, thank you. What is your daily dose?

Shir_11 profile image
Shir_11 in reply toMiss_E

Just the one Temgesic 2mg a day cut in half.

Shumbah profile image
Shumbah

I will send you my phone number I’m in Brisbane and Ive been in Buprenorphine for nearly 5 years now

707twitcher profile image
707twitcher

Joolsg is far more of a veteran at this than I am. But I've been on buprenorphine for 8 months and done some reading and experimenting. I would add a few thoughts:

If the side effects of buprenorphine aren't bothering you, then I wouldn't be afraid of increasing the dose. I typically take .4mg. But after cataract surgery I had to use steroid eye drops (to keep inflammation down) for 6 weeks. That affected my RLS, so I was taking 1mg a day for a few weeks. I had no trouble after the drops were done titrating back down by dropping the dosage by .2mg every 3 days or so. Everyone is different, so some may need to titrate more slowly to avoid withdrawal symptoms - just see how you handle it and adjust schedule accordingly.

Even though buprenorphine has a half-life of over 24 hours, some research has shown that it is only highly effective for 12 hours or so. I think most of us here on Bup only need to take it once a day, but several people do take it twice. When I take an afternoon nap, I will often have RLS symptoms. When I take Bup at nap time, I generally do fine waiting on the next dose until the following evening (a 32 hour span). I haven't yet experimented with splitting doses into twice a day.

The Bup patch is an option to consider if you are getting RLS symptoms late afternoon / evening. It delivers Bup steadily (somewhat) 24/7 for 7 days. However, most people find that they need to change patches after 5 or 6 days, rather than the recommended 7, because the effectiveness wanes toward the end. And I wouldn't recommend trying the patch until you have figured out what your optimal dosage is on the sublinguals. That's because it's far easier to experiment and adjust dosage with the sublinguals. If you have symptoms, taking more Bup will generally provide relief within 30-60 minutes.

Make sure you have checked for triggers in the other meds you take. Many common meds are problematic. List yours here if you have any doubt. You might also want to keep a daily log that monitors yours dosage, symptoms, diet, exercise, etc. I find that very helpful to spot triggers and trends.

Good luck!

DogBella profile image
DogBella

I find the film is easier to cut rather than the tablets of buprenorphine. I vary in the amount I take depending on my needs. For awhile, I took up to 2 films but most nights only 1 and 1/2 films. If I take too much at a time I get an upset stomach.

Oregonmike profile image
Oregonmike

I wish all prescribers would be pooled from RLS suffers themselves. Then they could fully grasp what it’s like. Sorry you’re suffering

intermk profile image
intermk

In my opinion, you're just not taking enough Bupr. When I first started on Bupr several years ago the doc titrated up the dose until the symptoms stopped, My dose at that point was 12 mg. That's correct, twelve (12) mg. Once we had the blood serum level up we began to decrease the dose to find the minimum dose that would work. Over several months I was able to drop down to 7 mg and this dose works for me most of the time. But 6 mg or less won't even put a dent in the symptoms. I'm a rather big guy though at 5'11" (180.34 cm) and 240 lbs (109 kg). So, just for that reason it takes a bit more to quell those nasty, painful symptoms. Two neurologists have told me they think I have the most pronounced RLS they have ever witnessed. However, RLS may not actually be the real problem. My arms, face and legs are all involved. Oftentimes my arms start up first followed by facial blepharospasms. Then the legs and my symptoms can come on anytime day or night. Recently I've had much trouble during the daytime when the Bupr level begins to drop. So, they wonder: is this a different neurological issue? Don't be afraid to ask your doctor for a higher dose and ramp it up until you get complete relief.

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