I have been on the Neupro patch for 15+ years and my doctor has prescribed Suboxone. I was told to take the 2mg film 2X/day. The first time I took it I was violently ill. I never took the 2nd dose. I felt bad for days. I waited 10 days until I felt normal again and I tried 1/6 of a film. I got sick again, not as severe, but so bad that I had to sleep sitting up and if I moved, I threw up. While I was “on” the Suboxone I was also very dopey and could barely keep my eyes open. BUT, I had ZERO restless leg. So I want to be able to take this medicine, but I get SO sick.
advice?
Written by
DeeKaye
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Welcome to the forum. You will find lots of help, support and understanding here.
If you need the suboxone, the Neupro is obviously not working and you don't want to be on it anyway as it is a dopamine agonist like ropinirole and pramipexole and you will eventually suffer from augmentation and then getting off it can be like hell - worse than heroin according to some. So get off it now before that happens.
You can do the reduction in one of 2 ways. Using a 1 mg Neupro patch cut it into sixths. Easiest way is to draw lines on it. This will equal the .25 mg reduction since 1 mg of Neupro = 1.5 mg ropinirole,. Or you can switch to ropinirole. Multiply the dose of Neupro you are taking by 1.5 to get the correct amount. Since you can get ropinirole in .25 tablets this is the easier way to reduce.
Then to come off ropinirole reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and your suboxone may help. But in the long run, you will be glad you came off it.
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. This is the first thing a doctor should do. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and 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. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
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 without progesterone and sometimes even with it, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin although it doesn't for all, 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.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender and any other health conditions you have.
Joolsg and Sue have already given a lot of good advice. I’ll add my two cents worth.
You may try to build up slowly, it may help to let your body adjust to the new medicine and reduce the severity of the side effects. Worth a try.
As you have the film, cut it in quarters or even 1/8 parts and see how that works. Here in the EU, we have sublingual pills of 0.2mg, and often 0.4(-0.8)mg suffices to quell the RLS symptoms. As Subuxone works quite fast (30-60min max), you can see how you react and add another quarter if the nausea is bearable and the RLS still unbearable. Go slow, go low.
Reduce your Suboxone dose to the lowest that eliminates the RLS symptoms. It takes effect within 30 minutes or so, so it's easy to add a little more if needed.
I cut my films with a razor blade. It's fairly easy to cut into 1/4 strips (.5mg), 1/8 strips (.25mg), or 1/16 (.125mg). Other fractions are not as easy to "eyeball". I have a couple scales marked on a small cutting board that I can use for 1/5, 1/6, etc.
Yes, opioids can affect people very differently. Are you still taking it twice a day? Most of us only take it once a day (usually an hour or two before bed, or a little earlier if your symptoms start earlier) because of its long half life. If daytime RLS symptoms bother you, you could take it twice a day. Definitely try cannabis or Zofran if you can for the nausea.
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