Time to up the dose?: So I started... - Restless Legs Syn...

Restless Legs Syndrome

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Time to up the dose?

Anthas profile image
28 Replies

So I started buprenorphine a little over a month ago and the effect was incredible and immediate, so much so that i even tried to cut the 0,2 sublingual pill I was taking in half but it wasn't enough so I went back to the original 0.2 with success. That was until like a week ago, that symptoms started to break through, slowly, without a clear trigger ( playing videogames before bed is the only one I can think about) so I'm wondering if it's time to up the dose or should I wait a little bit to see if it's just a bad week? I know that with buprenorphine is normal to increase the dose within the first year and I'm aware that 0.2 is below the minimum dose but I'd like to keep the dose as small as possible. Has anybody gone through the same process and then stabilized at a higher dose? I'm afraid this keeps happening and I keep increasing the dose, and I don't want to get into that...Thanks everybody!

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Anthas profile image
Anthas
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28 Replies
SueJohnson profile image
SueJohnson

You say it started about a week ago so I assume it has continued. In that case I would increase it a little. You will stabilize at a higher dose.

Anthas profile image
Anthas in reply toSueJohnson

Yes, it started slowly...today was the first night I actually woke up from it, before it was just a little difficult to fall sleep but then I would keep sleeping

SueJohnson profile image
SueJohnson in reply toAnthas

Then you might wait a few days to see how it goes.

Busunsc713 profile image
Busunsc713 in reply toSueJohnson

I've written before as the advocate for a friend who was experiencing augmentation from dopamine agonist (approximately 8 months ago). Well I'm writing to give both an update and get some advice. He successfully weaned off of the dopamine agonist and is currently on Gabapentin 600mg twice daily at 2 and 4 hours prior to bedtime respectively. Additionally he is prescribed 10mg instant release hydrocodone 1 hour prior to bedtime and 1 tablet 4-6 hours later if needed to maintain minimal periodic leg movements during sleep. Daytime RLS is gone. He was initially able to sleep through the night when hydrocodone first started; now, he doesn't sleep as sound and awakens because of the periodic limb movements. The physician tried Extended Release hydrocodone but it did nothing. the instant release hydrocodone produced sleep and controlled his legs. Now I'm wondering if he is experiencing mini - withdrawal at night from the short acting hydrocodone and need to try weaning both the Gabapentin and Hydrocodone regular release and try Buprenorphine?????? Your thoughts are appreciated.

SueJohnson profile image
SueJohnson in reply toBusunsc713

That's great he is off the DA!

If the gabapentin helped at night he may need to increase it more and that might solve the problem. If it never helped and increasing it doesn't help then he should wean off it very slowly - 100 to 200 mg every 2 weeks - to avoid withdrawal effects

He could do one of 2 things. He could take the Hydrocodone regular release every 6 hours or he could switch to buprenorphine. Someone else can tell you how to switch as he may not have to wean down. You could make a post asking that question.

Busunsc713 profile image
Busunsc713 in reply toSueJohnson

Currently he is experiencing fatigue in the early afternoon. My thought was that the combination of Gabapentin and hydrocodone may be causing this. You may be right that he needs more Gabapentin, but if so, the fatigue would only become worse until he becomes use to the increased dose. Maybe then, we could reduce the hydrocodone. He needs to leave his home at 7am for work. I’m trying to think through a regimen that would start around 5pm and take him through 6 am … with minimal residual effects.

SueJohnson profile image
SueJohnson in reply toBusunsc713

Gabapentin should have worn off by the early afternoon so I doubt it is causing the fatigue but we all react differently so it is certainly possible.

One other possibility is dipyridamole. He might want to discuss this with your doctor. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a...

He would take it on an empty stomach. (fats inhibit absorption) about 1-1/2 to 2 hours before bed. If he has headaches they tend to disappear or lessen after around 5 days.

Busunsc713 profile image
Busunsc713 in reply toSueJohnson

Thanks. I’ll read the study.

Jelbea profile image
Jelbea

you say 0.2 in your present post. In previous post you mention 0.2 mg. If this is correct it is a high dose. If it is really 0.2 mcg (micrograms) then this is a very low dose. I take a total of 0.800 micrograms daily which is more than most. Good wishes

Anthas profile image
Anthas in reply toJelbea

I take 0.2 mg, which is the smallest sublingual pill. I thought it wasn't a high dose and that 0,5 to 6 mg was the usual dose range ...now I'm confused 🤔

Joolsg profile image
Joolsg in reply toAnthas

No you're correct. It's a 0.2mg pill, not microgram.And 0.6mg is more usual.

You can increase the dose as most people require a upwards adjustment in the first year.

I started on 0.2mg but was woken around 5 or 6am with RLS.

I take 0.2mg at 9pm and 0.2mg at midnight and it works brilliantly.

No further increase in over 3 years.

SoundsMusic profile image
SoundsMusic in reply toJoolsg

Can I ask what brand buprenorphine sublingual tabs comes in 0.2mg? I’m using Subutex but the lowest it comes in is 0.4mg so I have to split the tablets. The dose that’s working for me mostly is 0.1mg so I’m cutting the tabs in 4 which is problematic - sometimes they crumble..

Joolsg profile image
Joolsg in reply toSoundsMusic

Are you in England? There are a few brands that start at 0.2mg, but I use a 0.4mg pill and cut it in half with a pill cutter. Accord and Sandoz brands can be cut without crumbling.Temgesic and Tephine come in 0.2mg tablets, so you could try those.

SoundsMusic profile image
SoundsMusic in reply toJoolsg

Thanks Jools - I’m in ireland

Joolsg profile image
Joolsg in reply toSoundsMusic

Not sure what brands are distributed there. Your pharmacist will be the best person to ask. Mine was really helpful. He ordered a few different brands so I could see which worked best & was easiest to cut.

SoundsMusic profile image
SoundsMusic in reply toJoolsg

Super - thanks jools. I’ll link in with the pharmacist 👍🏻

Jelbea profile image
Jelbea in reply toJelbea

I do apologise. I am not too well at present and got mixed up with the amounts. I do hope you get sorted and find good help with the buprenorphine. Joolsg and Sue will keep you right. Good Wishes

Anthas profile image
Anthas in reply toJelbea

Thanks! No problem! Hope you get better!

Anthas profile image
Anthas

Thanks Joolsg, I just find it weird that it worked perfectly for a month and now it doesn't... Did it happen to you in the same way?

707twitcher profile image
707twitcher in reply toAnthas

I think most of us here had to experiment with dosage frequently during the first few months. When I started it 8 months ago, I was able to use .33 mg every other day. After ten days or so I had to go to every day. I’ve used .4mg, .5mg, and even more when I had break throughs due to triggering meds. I’ve now settled into .33 mg(which is 1/6 of a suboxone sublingual strip). I fully understand wanting to keep the dose as low as possible. But I see no reason to suffer. If you have break through symptoms, take a little more. You can always experiment again later by lowering the dose a bit to see what happens. Cutting your 2mg pills in half so you can take .3mg seems like the way to go. As long as you are getting by with such a low dose, increments of .1mg for break throughs should work.

Joolsg profile image
Joolsg in reply toAnthas

No, I knew instantly that 0.2mg didn't cover my RLS.But it does seem to be a normal occurrence to increase in the first year.

hausbauer profile image
hausbauer

I take 0,2 mg a day, but sometimes - appr once a week - this dose does not seem enough and I take an additional quarter or half of 0,2 . It happens when I eat something which triggers RLS or when I take my dose too late. Sometimes I find no cause, it just happens. But on the whole I try to stay on 0,2 mg and put up with occasional RLS during the night, as long as it does not last more than say 10 minutes. Often mere stretching helps.

Claire_lc profile image
Claire_lc

Hi Anthas, I started at 0.2mg on 7th May this year. Two months later my diary shows that I had to occasionally increase to 0.3mg to cover breakthrough symptoms. Within two more weeks it had become obvious that I needed 0.3mg daily. I’ve been on that dose ever since (which I know isn’t very long). Like you I want to take as little as possible, but I’m reassured by Jools and others who have been taking it for several years at a stable dose, needing only to tweak the dose a little in the first year. I suppose we all need to keep comparing notes on this.

SleepDepriv3d profile image
SleepDepriv3d

I am in Australia and I have been given 2mg pills and advised to play around with the dose. I have only been taking it for two weeks. For the first week I broke the pill into quarters and took one quarter (0.5mg) at 6pm and the other quarter (0.5mg) at 6am. I did this as I found that whether I took 0.5 or 1mg at night, I still had RLS in the morning (I have symptoms 24 hours a day thanks to dopamine agonist augmentation). But with the quarter at night and quarter in the morning, I was symptom free for a week.

But then I’ve had some personal life stress and now I have had to increase my dose to the full 2mg, and unfortunately, I am still experiencing breakthrough symptoms.

It scares me to read that I am taking a much higher dose than everyone in this thread, and it isn’t covering my symptoms. I’m not sure if stress is just an extreme trigger for me, or if this medication isn’t going to work for me. Does anyone have any thoughts?

Anthas profile image
Anthas

I'm no expert, but if you are coming of DA, the effect of buprenorphine might be limited until time passes... Look for it in this forum

Simkin profile image
Simkin

I take 200 microgram sublingual tablets (Tephine). One at 10pm.Is that 0.2? Am not sure.

I do sometimes get breakthrough at 8pm but not always and it can drive me mad.

Often if I am extra tired or a change of routine.

But other times my legs are fine.

I try & stick it out.

SueJohnson profile image
SueJohnson in reply toSimkin

Yes that is .2 mg

Simkin profile image
Simkin in reply toSueJohnson

Thanks Sue

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