After 14 years on dopamine agonists (first ropinerole and now pramipexole) and the inevitable augmentation, I have been tapering off of pramipexole since last April. I am under the care of a neurologist who is educated about DAs and augmentation.
I was taking 1 mg of pramipexole last April and am currently taking .125 mgs. Initially, I was prescribed opioids to help with this transition; a month ago my Dr. switched me to buprenorphine/naloxone 2 mg/.5 mg. Most nights I take a half of a tablet.
I really dislike being on this medication. I can easily sleep 9-12 hours, and am experiencing severe constipation. I also feel highly anxious on it.
I also experienced numerous issues with the opioids, but this is worse.
I am waiting to hear back from my Dr., but wondering about getting off of the buprenorphine/naxolone. Has anyone stopped taking it, and was it difficult? Of course I won’t stop taking it without following my Drs directions, but I’m so frustrated with all of these drugs I’ve been taking just to get off of another drug. Sometimes the opioids and buprenorphine seem worse than the DAs.
Also, has anyone gotten off of all of these medications, the DAs as well as the drugs used to get off of them?
Thank you so much. I’m so thankful for this forum!
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Buprenorphine does cause constipation for some and anxiety.The naloxone is supposed to prevent gastric issues.
Buprenorphine is an incredibly effective medication. The side effects can usually be resolved.
For constipation add chia and flax seeds to breakfast, take a good probiotic like VSL or symprove and add brassica to every evening meal. Magnesium citrate at night also helps.
For anxiety- I added a small dose of pregabalin and that helped with sleep and stopped alerting.
In your case- as you are still withdrawing from a criminally high dose of Pramipexole- you should weigh up the pros and cons. Withdrawal without Buprenorphine will be brutal.
You need to have a detailed discussion with your doctor.
Any reduction of opioids should be done slowly.
Your doctor might switch you back to another opioid.
Thank you for your response, Joolsg, and your very helpful ideas. I was actually taking 2 mg of pramipexole 2 years ago - I kept being prescribed higher doses to treat what I now know was augmentation.
I am taking a probiotic now, and have upped my fiber intake tremendously. I haven’t had a chance to get chia and flax seeds yet, but plan to.
Two possibilities instead of opioids to help you come off pramipexole are kratom or cannabis.
Unless you are successful in solving your side effects with buprenorphine or another opioid, I would suggest using gabapentin or pregabalin. They won't help you get off pramipexole but you are going to need something to control your RLS once you are off pramipexole.
On the gabapentin or pregabalin, the beginning dose is usually 300 mg gabapentin (75 mg pregabalin). (Pregabalin is more expensive than gabapentin in the US.) Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.
Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to divide the doses on pregabalin)
Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin)."
If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium or antacids don't take it within 2 hours for the same reason (not sure about pregabalin).
Have you had your ferritin checked? If so what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible.
When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.
Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment at Https://mayoclinicproceedings.org/a...
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.
Thank you for your reply - you are a wealth of information!
I tried taking gabapentin several years ago, as well as Horizant, when I was still taking ropinerole. Neither medication helped my RLS at all. I also was extremely tired all of the time and gained 8-10 lbs.
I have had my ferritin checked for several years now, and have had iron infusions twice. Currently my ferritin is over 100, but my Dr. is not sure that’s accurate because I had an upper respiratory infection at the time they tested me, which apparently can affect ferritin levels temporarily. I am going to have my ferritin retested in the next month.
Buprenorphine is an opioid - just one that's much harder to abuse for those seeking a "high". Have you tried reducing the dose below 1mg? Many of us here get by with .5mg or less. The lower the dose, the lighter the side effects (generally). If you can't cut the tablets into smaller pieces easily, ask to swith to the sublingual film strips (Suboxone). It is much easier to cut those into smaller pieces (by using a razor blade).
Constipation was my worst side effect of buprenorphine. I've found prunes to be the best remedy. Two dried prunes a night is usually all I need. It's not the roughage that is so effective, it's a chemical they contain (sorbitol).
Others have already go en good replies. I just want you to consider that the anxiety may also be a side effect of the pramipexole reduction. Given your time schedule, it doesn’t seem you are reducing too fast. But your current problems may not be due to the buprenorphine and may resolve when you have been off the pramipexole completely.
However, difficult to give you good advice other than keep going with reducing the pramipexole and have a good discussion with your doctor.
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First post from a 40 year RLS sufferer 
