I'm wondering whether any of you who've been taking sublingual Buprenorphine for a while have had to increase the dose at all? I started on 0.2mg about 3 months ago, and in the last few weeks I've had to take an additional 0.1mg increasingly often in order to deal with breakthrough RLS. I think I need to make 0.3mg a regular thing now.
I know 0.3mg is still a tiny dose. I'm just concerned about whether I'll need to keep increasing, or whether you think this is a one-off, while my body adjusts to the right long-term dose.
I'm sure all the studies mention dose increases not being needed, but would love some reassurance from people with more experience.
Big thanks,
Claire
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Just to add, my appetite is almost non-existent, and I have to force myself to eat. A small price to pay, as a recent post mentions. But I do miss enjoying food.
I have been taking 0,2 mg for almost 4 years now, staying more or less on this dose. My appetite is still reduced. It is better now than it was, but still not satisfying. I also miss enjoying food.
I believe that Joolsg has been on 0.4 mg for 3 years, and that the National RLS Opioid Registry shows that low-dose opioids can control RLS symptoms over time with minimal dose escalation in most patients with refractory, augmented RLS. RLS patients do not become 'addicted' or develop tolerance to low dose opioids.
I have been on buprenorphine for 8 months now. There have been numerous times when a trigger (caffeine, PPI, statin, steroid eye-drops, etc.) has caused break-through symptoms and a need to take more. That's why I use a daily log to keep track of symptoms, meds, food, etc.
But even when there are no identifiable triggers, I have found that my dosage needs can fluctuate a bit. Like you, I have side effects (constipation in my caase) that I really want to keep as manageable as possible. This keeps me trying to keep my dose low (I sometimes do fine for several days on just 1/8 of a 2mg strip - so .25mg). The break-through events only take an hour or so to settle by taking a little more buprenorphine, but that can be discouraging at times. Obviously, taking a little more consistently (say .4mg in my case) would limit the break-through events.
I get frustrated with how much time and effort goes into managing this disease and the treatment side effects! Daily log, nervous when going to sleep about possible break-through, worry about taking a nap for fear of RLS then, dose and delivery method (patch vs. suboxone strip) experimentation, checking out every alternative that I read about (dipyridamole,tramadol, TENS units, diet, etc., etc.). This site helps immensely - not only for all the information offered, but for the support and the realization that I'm not alone.
You are so right about the effort involved! But with buprenorphine keeping a lid on 99% of symptoms, like you I’m prepared to accept any amount of inconvenience. If it wasn’t for this site I’d still be pacing the house every night and contemplating suicide.
Hi , Ive been on 0.4 mg sl tablet since April when I was prescribed Buprenorphine . I had a couple of nights in June where I had to get up and walk for 10 mins or so but apart from that 0.4 just suits me fine . Good luck .
I’m so glad you have your RLS under control. I remember what a battle you had to obtain it. Good to hear your dose hasn’t increased. I think maybe I started a little on the low side at 0.2mg, so increasing to 0.3mg or even 0.4mg is really nothing to worry about.
My appetite is also poor and Ive lost quite a lot of weight ( but I needed to!)Nausea varies from day to day . Constipation much improved . Had the best news ever yesterday , my new Gp has finally agreed to prescribe it ! So party time last night minus the alchohol ! Good luck .
Dr Winkelman's opioid study expressly states that in the first year, there is an upwards increase in dose to find the 'correct' cover.The other thing to be aware of is the difference between brands.
I have expressly noted that I get ZERO symptoms on Accord brand. But when that isn't available , I am given Sandoz, prefib or Morningside, I get breakthrough RLS every night between 7 to 10 pm. There is clearly a small difference in effectiveness, but enough to cause RLS.
So, it could be that you need to take 0.3 or 0.4 regularly, OR a different brand is less effective.
That’s so true hon, I didn’t know what was going on there for a couple months until it dawned on me that one month the pills tasted a bit different under the tongue and it was least effective than what I had previously been taking.It never dawned on me that I could end up with a different company now then. good to know now. it’s scary though.💜
Jools I think you might be right about different brands having different levels of effectiveness. A diary log of which brand has what effect would be useful. Every time I pick up a prescription it seems to be a different brand, so it shouldn’t be hard to work out a ‘brand dosing protocol'.
hi hon, I’ve been on it for 3 1/2 years now and I started out low but right off the bat within two weeks we had to go up on mgs and stayed like that way pretty much until I got to the highest dose from what the doctor says 8 mg ,one tablet at night. It really scares me for the simple fact that I don’t have anywhere to go when I’m already at the top, the doctor did say i was a hard nut to crack ,because he’s not sure where we would go if that becomes least effective. anyway that’s another story. Most never have to up the dosage of their medication. .❤️🩹
I hope the Buprenorphine dose just levels off without you needing increases. I see how much smaller a dose you start with in the UK. My dose was .7, and even that was difficult to get; my pharmacist said it us an unusually low dose, which I was finally able to get from Costco Pharmacy.
Yes we seem to be ‘lucky’ in the UK in that doses as low as 0.2mg are available. Trying to cut larger tablets into very small slivers can’t be easy - or accurate. Glad you finally found a low dose source!
So interesting. Everyone seems to have a slightly different experience. It definitely doesn’t seem to be the case that no one needs to increase, ever. Which suggests some tolerance can develop. But given how life-changing buprenorphine is, I don’t think any of us are complaining.
For 4 years I am on 0,2 mg. When I eat something wrong or for whatever reason RLS sets in - so sometimes I increase to 0,3 mg.
But on the whole I try to stay with this small dose owing to the side effects like tiredness during the day, constipation and loss of appetite. I think all these things will increase if I take more bupr. But maybe this will not happen - I have not tried it yet.
If you still have those side effects after four years, I would agree that it’s likely they would get worse at higher dose. But if they were side effects that you had initially but not now, then it’s possible they won’t return. I have been on buprenorphine for 8 months, and my side effects are most definitely sensitive to dose level.
I agree. I dread to think what the side effects would be at higher doses. I take exactly the same dose(s) as you, and like you I must be sensitive to meds. I manage the constipation with high doses of magnesium, although sometimes I take too much and have the opposite problem!!
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