Hi all. In the ongoing battle to get things stable I have been able to decrease my buprenorphine to under .5mg sublingual (from 2mg) and pregablin to 100mg (from 225mg). RLS is mostly managed well which is terrific but I can't say that I feel much less tired overall having decreased dosages. Like many of you, I periodically reach out to Dr Buchfuhrer for guidance having so little access to actual specialists/experts in this part of the country. He suggested that moving over to a low dose opiate might be better theoretically causing less of the next day sedation. So, before having the conversation with my doctor (which I'm already worried about), I wanted to ask if anybody had switched from bup/pregablin to low dose opiates and how they did that. I know/assume there can be withdrawal issues from both BUT I also know I had to pull off of the buprenorphine at least 2 weeks ahead of knee surgery in order for anasthesia and pain meds to be functional two years back. I had an arthroscopic procedure done first and the conclusion was that I needed longer than 2 weeks to clear buprenorphine because none of the pain medications were working. They had to do a nerve block to send me home. So for the knee replacements months later, I actually had to go back to pramipexole for almost 4 weeks before surgery.
All of that to say, how do you move from this combination over to a low dose opiate? Do I have to get buprenorphine completely out of my system to start the other or can I overlap and be fine?
Secondary question, Dr Buchfuhrer said that my dopamine receptors are likely permanently damaged from the years of pramipexole use at such a high dose (3mg + for a decade and 1-2mg for amother decade or so before that). Does anyone know what that really means?
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Sorry Sue, it's me not explaining well. I believe he was just saying moving over to an oxycodone or something that has a shorter half-life.
I think I'm getting stuck on the dopamine receptor part more than anything. I don't find much in the way of saying that permanently damaged is a thing. If it means pregab and gabapentin don't work what happens when in my system. Do they just sit there in n my system and is that why I am so dull and tired the next day?
They don't just sit there in your system, they will be cleared from your system as they normally are unless you take another dose. Since you are taking pregabalin, that is the case and pregabalin can make you tired. You are smart to reduce it slowly if it doesn't work to avoid withdrawal effects.
You are clearly a complicated case. Dr Buchfuhrer and other experts believe that dopamine agonists cause permanent damage to our dopamine receptors. Functioning dopamine receptors are needed for iron uptake in the brain and damage means iron infusions often do not help and nor do gabapentinoids.
I'm not sure switching to a low dose opioid will resolve your 'tiredness'. If you have drowsiness with Buprenorphine, you will likely have it with Oxycontin or tramadol.
I switched from 25mg Oxycontin and 150mg pregabalin to Buprenorphine because they didn't do much at all and my RLS was very, very severe.
I would consider reducing pregabalin slowly down to 25mg but stay on 0.5mg Buprenorphine.
If you do decide to switch to another opioid, you make a straight switch overnight, at an equivalent dose. I switched from 25mg Oxycontin to 0.4mg Buprenorphine, so you could switch to 30mg Oxycontin, taken in 5mg doses every 6 hours to avoid the mini withdrawals manynof us suffer on Oxy. Or you could take 10mg every 8 hours.
For future surgery, you could discuss pain relief well in advance to avoid the need to go through Buprenorphine withdrawal.
Normally, they keep you on Buprenorphine and increase the dose of pain killers needed to control post surgery pain.
Im not sure it will help the fatigue either but need to do something. My quality of life is seriously fading. I can keep trying to lower my Pregabalin. My first effort at going under the 100mg kicked of RLS. (and yes, complicated seems to be to word.). Thank you!
It's all in the effort of trying to figure out what is staying in my system longer each day and making me feel tired all the time. I can't believe the words are coming out of me but I miss the pramipexole. Not really really- but I felt normal, I woke up and had the ability to function like my normal self. It's certainly limited to just that because it was obviously horrid otherwise but maybe you understand what I mean. It just feels like I traded one sh&@show for another. 🤦♀️
It could be the combination of meds that is exacerbating the fatigue. Both buprenorphine and pregabalin can cause fatigue. I may be mistaken but i believe LotteM experienced considerable daytime fatigue on buprenorphine. Also, when reducing pregabalin, some people experience increased RLS for a few days with each dose drop. Or as SueJohnson says, that dose of pregabalin might be necessary to cover your symptoms . I hear you re. pramipexole...I felt best on that also (but unfortunately augmentation occurred within 12 months).
Correct Amrob. I still experience fatigue, even on my low dose of 5mcg/h 7d patch. I find it difficult to attribute totally to the buprenorphine, but don’t really know what else might contribute. Not on other meds that have drowsiness/fatigue as a side effect. I often wonder whether the fatigue has settled itself into my system after years with good reasons (very poor sleep due to badly controlled RLS) to be tired. Maybe we now have to ‘unlearn’ to feel tired all the time.
I have wondered that at times too. I think the heaviness that comes with the fatigue feels so different from just tired though. I've had to rearrange my work hours to start later and see less people, being active is HARD where it never was before. It could totally be that time and RLS have taken control of what is "normal" after 30 plus years of it. I want to believe otherwise though!!
I completely understand your feelings about pramiprexole. I was on ropinirole for 16 years. I’ve been off of it for about 3 years now. I miss the person I was when I was on it. My quality of life was definitely better. I was happier and slept better, as long as kept popping those DA’s through the night. BUT, it was impossible to continue because of the issues with augmentation. I just had to get off of the run away train. I was already on twice the recommended dose and could barely sit down during the day.
Same here. Those drugs work until they destroy you. I augmented, was directed to go off cold turkey (I should have known better) and it was the worst 10-day experience of my life. I'm still not recovered - 4 1/2 yes later. I lost the ability to easily read, and it's been years, now, trying to get my reading back. I've been a reader since I was three; I lost half of myself with those drugs!
Me too. At the worst of it I was 3mg and higher. I get so angry thinking about the docs that just told me to increase the amount I was taking over those years. It does also make me wonder if the dopamine agonist part was assisting in general feel good through those years.
I definitely think the dopamine rush I was getting was helping to make me feel good. But I feel like I’m paying for it now, because of the ultimate damage that has been done to my receptors. Damned augmentation!
building off other comments here, I would think you might try substituting gabapentin for pregabalin, or methadone for buprenorphine. Either switch may do nothing or be even worse, but given how differently we all respond to different meds, I’d certainly recommend experimenting. Given the similarities, either switch could be made immediately without worrying about withdrawal, etc.
My doctor looked at me like I was insane when I asked about switching over to methadone, not sure I'd be able to find someone here to work with me on it. Sue had mentioned the switching to gaba awhile back too-I think I'm reticent to feel like I'm adding more pills to my routine ( i will get over it 😂). I'm going to try to reduce the pregablin first and see if that does anything for me. It seems like it should all be easier to talk about with our doctors, they make this unnecessarily difficult.
I take pregabalin (300-400mg) and hydrocodone (5mg codeine, 325 mg acetaminophen). I also take 200mg dicyclomine. They are moderately effective for me. I don't feel any side effects from the opiate. I'm not 100% controlled, but after the horror of withdrawing from pramipexole I'll accept a few night awake ones...I just can't have a job, because my energy levels are all over the place. Not the opiates fault, though!
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