I’ve been off pramipexole for a bit over two weeks. I had a fairly easy transition off it thanks to buprenorphine and cannabis, along with pointers picked up here about iron supplements, diet, etc. I started pregabalin but stopped taking it after 10 days or so because of the comments about it not fully working until the DA is out of one’s system.
When I started, I assumed I would want to come off the buprenorphine and replace it with pregabalin, mainly because of my doctor’s unease with opioids. But now I’m wondering what choice other sufferers would make? The buprenorphine (Suboxone) seems to be working well (2mg/.5mg strips). My main complaint is the difficulty involved in cutting the strips into eighths (that dose seems to work for me if I avoid sweets and take iron). A minor issue, for sure, in the grand scheme of things.
I’m fatigued on the Suboxone, and have mild itching. But I understand the side effects are likely to lessen. And I suspect I can talk my doctor into using suboxone indefinitely - thanks to many of you for posting great articles on this subject. But might pregabalin be better in the long term? Or should I just continue experimenting to see what works best?
Thanks
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707twitcher
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Hello - as someone who has tried all the medications available I would say if your medication is working I would stay on it. All the medications we take have downsides so if the side effects are bearable and it’s working I’d enjoy the relief. If at a later date things change you still have pregabalin to fall back on - which is an excellent position to be in. I’m so glad for you that you have found something that works even if it is difficult to cut. I hope it continues.
I agree with Drls. All RLS meds have side effects. Opioids can cause constipation, itching, anxiety and daytime drowsiness.
Pregabalin can cause weight gain, leg swelling, anxiety and drowsiness.
As for the difficulty cutting the buccal film into eighths, unfortunately there isn't much to be done. Until the USA manufactures or imports the low dose pills available in Europe and the UK.
I'm trying to get off pramipexole after being on it for over ten years. Down from 3.0 to 1.5 mg each night. So good to see your success with buprenorphine and cannabis. What dosage of each?
I recently discovered that drinking enough water throughout the day has had a huge influence in reducing my RLS symptoms. Two months ago I was struggling mightily, despite gabapentin and pramipexole, when my wife reminded me that a friend of hers had found it helped to drink water in the evening. I had tried that previously, with no success. But this time, I drank water throughout the day. I've found that if I drink 56 to 64 ounces or more, it pretty well guarantees that my meds will do the trick and allow me to sleep. I've slept well enough in the past weeks to have begun returning to the person I had all but forgotten, the version of myself with enough rest.
I'm still nervous about backing down further from pramipexole. My sleep has been too lousy, for too long, to want to risk it again without a month or two more o recover.
My suboxone doses since I started it have been between 1/8 to 3/8 of a 2mg strip. Cannabis has been 3 or 4 vapes when I notice any RLS twitching. I used to take 5mg of Indica edibles to help with sleep. But edibles take an hour or more to kick in, so vaping is much faster acting. Hydration, especially after salty meals, was very important to my RLS symptoms when I was on pramipexole. (I was only on .25mg, but would have to double or triple it after a salty meal). Interestingly, salt doesn't seem to affect me as much on the buprenorphine, but sugar does (it wasn't a trigger for me before). Now, I don't snack after dinner so that I can take an iron supplement on an empty stomach before bed. That helps eliminate the sugar problem.
I understand your reluctance to mess with sucess as far as tapering off further. Curious how your dosage evolved over time to get up to 3mg? I assume augmentation required you to keep increasing the dosage to get the same relief? But I would advise you to keep tapering down, especially if you can get a suboxone Rx to help the transition. Keep hydrating, maybe try an iron supplement, and keep tapering. Based on what I've read here (from Sue and others), I thought that gabapentin was not likely to work very well as long as you are on pramipexole. Are you still taking both?
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