I have been taking Pramipexole in large does for years. I finally managed to get off it and have, until recently been taking 0.5 mg buprenorphine/ Naloxone and 5mg Neupro patch. I cut down to 2.5 Mg patch last week. I have been taking both medications for about 4 weeks.
I am experiencing very unpleasant nausea and am wondering if it is a side effect from either medication or a result of cutting down on the patch?
I also read that one has to spit out any remaining debris after the Buprenophene has been absorbed sub lingualy? Im finding that after the 15 mins absorption time is up there is nothing left to get rid of. Perhaps I am keeping it under my tongue for too long?
Can anyone please cast any light on this problem?
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welschrispy
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Why oh why are you on the Neupro patch after months of weaning off pramipexole? It is basically ropinirole only in patch form. I assume you are trying to get off it, but you are going too fast. You should reduce by ,25 mg every 2 weeks and let the symptoms from each reduction settle before reducing any more, You can get 1 mg patches to make it easier. The nausea can be a result of your withdrawal symptoms from the Neupro patch. or from the Buprenophene.
I was given the Ropinerol patch to help me get off the Pramipexole. This didn't make sense to me since both are dopamine agonists but I tried it and I am off the Premepexole but out of the proverbial frying pan and into the fire! He swallowed a spider to catch a fly.........
Except that the Nausea is way preferable to RLS. So now I will take your advice and hope to get off the Ropinerol. But one more thing. The specialist I am working with recons that because I have such chronic RLS and have been taking huge doses of Pramipexole for years, I will probably need to stay on the buprenorphine for life and take a very small dose of either Pramipexole or Ropinerol as well. Now after 2 years cutting down from 6mg to nothing this seems a bit counter intuitive. I will, of course try to get off the DAs altogether but do you think he might be correct?
Incidentally, for any Canadian sufferers, said specialist is called Dr Jason Valerio and he is based at the UBC sleep clinic in Vancouver BC. He has been very helpful and he certainly knows more than any other doctor I have found over here.
Yes you will probably have to stay on it for life, but I wouldn't add the dopamine agonists back. There are other things you can try. Like dipyridamole and CBC and THC gummies. Did you ever have your ferritin checked?
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, 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, 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, using a standing desk, listening to music 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.
you must be despairing of my case! It seems I have done all this agonizing work to cut out Pramipexole only to get hooked on Ropinerol. How could I have been so stupid? Why oh why can't the medical profession not wake up and do the research!?
To anyone who reads this.. please understand that dopamine agonists like Premipexole or Ropinerol may help a little at first, they are extremely poisonous and should be treated as such.
I will follow your advice now and try to get off the Ropinerol.
Sue I am so grateful to you for all the help and support you have given to me over the years. At a time when the whole planet seems to be loosing it's marbles you just keep on putting the life affirming stuff back in.
I don't suppose you ever considered running the country? I am not kidding.!
As for ocms I have been using Gravol for the nausea. and would welcome any suggestions. It seems that getting off Ropinerolwill be my new reality.
I wouldn’t discount the possibility that your Dr from the UBC sleep clinic does know what he is talking about. Many drs know nothing about RLS but he sounds like he does. He will have experience of treating actual patients & his combo advice could well be from experience. We aren’t clinitions on this site, only people with vast experience & knowledge but it doesn’t mean we are right all the time either.
You haven’t necessarily been stupid at all. Why not ask your Speciasist why he has advised what he has & discuss it with him too.
Gravol can make RLS worse for many. Safe anti-nausea medicines are, Kytril (Sustol, Granisetron, Sancuso), Anzemet (Dolasetron), or Zofran (ondansetron)
Hello Sue. Further to your very kind suggestion that we list our other medications and you will review to see if it’s an antagonist. I used to suffer dreadfully from Migraines, my first at age 14 after watching the film Ben Her at a cinema, anyway a Neurologist prescribed Epilim (I don’t suffer from Epilepsy) as a means of reducing the severity, they could last several days and at their worst I would get them weekly. My dose was 700 mg morning and the same at night. I take (Rizatriptan 10mg) when I get an attack but as these are now few and far between I have reduced Epilim to 500mg morning and same at nigh and will continue to reduce slowly. I’ve been taking them for about 20 years and the doctors keep an eye on liver and kidney function which are fine. What do you think Sue.
Hi Sue. I went to see my GP this morning and I passed over several bits of info. on RLS including that related to the link with Iron and RLS which he was grateful for. He will work with me to come off Ropinirole and has prescribed 0.25 and 0.50 mg tablets and said I may have to reduce the dose over a longer period if symptoms don’t calm down sufficiently between reductions. I mentioned Opiates, Buprenorphine and Methadone neither of which he is able to prescribe, also not happy to prescribe Tramadol. He will prescribe Gabapentin when I’m further down the line. I said you must have other patients with RLS and what do you prescribe for them. He said that they were very mild sufferers and he hadn’t come across a patient either severe persistent RLS. He is going to do some research but may well refer me to a Neurologist. Before my appointment I’d come out of a hellish night of virtually no sleep and walking didn’t help and at 9am this morning it was unbelievable with pain in leg and feet and that persisted all day with 2 hours respite this evening but it’s now 10..30pm and I can’t keep still my right leg has a life of its own, I know it sound funny, but that’s far from the truth and where as walking helped it’s not helping now and see another hellish night ahead. I think I may have brought this on myself by not having pills Les than 1 mg and trying to cut them. But until I get my regulated lower doses am going back to original 6 mg spread throughout the day and night. So the moral of this story is listen to Sue as she knows best and don’t try and go it alone. I think I. May well beat my record of walking round our open plan ground floor of 4 mikes in a night.
PS. I can’t find how to post to the community without piggy backing someone else’s post.
Hi. Hate to read of such suffering while you figure out what to do. Please order red vein kratom powder (as tea from the netherlands-Joolsg posted the link). It will stop the rls at night and keep you from such torture!
Hi TeddiJ. Thanks for the reminder about red vein Keaton powder I will try and find the link from Joolsg. Better night last night as went back to original dose of Ropinirole and spent a lot of time standing in a hot shower which doors help. I am so grateful for everyone’s support but medical professionals in Britain are we’ll behind America, I was told by RLS-UK that were 10 years behind. But our Medical Practices and GPs are overwhelmed with the number of patients they have to see and you generally only get 10 minute consultation period, I actually got twice that time with a sympathetic GP but not sure he really has a handle on it. Anyway will try Red Vein Powder if I’m allowed to import some from the Netherlands.
Hi, Teddi: Dr B just prescribed Buprenorphine/Naloxone sublingual film 2mg/05mg for me because the oxycodone I have been taking in the last 7 to 8 years is no longer controlling my symptoms anymore. But I hesitate switching to it for fear of more unpleasant side effects. Since you have been taking Suboxone for a while so I'd like for you to share your experience with me. Do you experience any unpleasant side effects like insomnia, constipation and nausea or others you have experienced. How do you think of it. do you think it is better than the methadone you once took as far as the side effects concern. I'd appreciate for your reply in advance. Chen Halperin
I'm glad your doctor is sympathetic and willing to listen. And yes, going back to 6 mg and starting over is a good idea. You might print out the section of the Mayo Clinic Updated Algorithm on RLS about opioids to show him, or perhaps your new neurologist will be willing to prescribe them. To post, at the top there is a icon that says Write. Click on that.
Thank you Sue, last night was not great but better than night before. Thanks for advice and will do as suggested. Joolsg has very kindly sent me some links. Onward and upwards
I agree with Sue. You went through all that suffering to get off Pramipexole & your doctor has put you back to square one.
The top experts are clear about augmentation. It is an over stimulation of the D1 receptors and adding another dopamine agonists will fire up those D1 receptors again.
Follow Sue's advice and slowly get off the patch.
Buprenorphine on its own will cover your RLS. Buprenorphine causes severe nausea and lasts a few weeks until you get used to it. I took medical cannabis to stop the nausea ( chemo patients use it for nausea).
The 'swilling out' after taking Buprenorphine is a suggestion made by the FDA because Buprenorphine is now linked to tooth crumbling. The FDA thought it was due to acid erosion and suggested swilling out your mouth AFTER you've FULLY dissolved the tablet under your tongue. However, that doesn't make sense as it is only in your mouth for 2 to 3 minutes. People on the patch have also suffered tooth crumbling. My mouth is very, very dry at night with Buprenorphine and I suspect this is why teeth are crumbling. Someone on here suggested artificial saliva mouth washes and products and to chew gum.
So, follow Sue's advice, get off the Neupro patch slowly and stick with Buprenorphine. Sadly, you'll have to go through tough withdrawal again.
Have a look at my recent post about Dopamine agonists where I included Dr. Winkelman's article on these dangerous drugs.
Hi! My 2 cents: I have a feeling he didn't suffer at all. Both the patch and the BUP would cover it. I used to toggle between DA's and I didn't miss a beat. It works short term, when augmenting on one of them.
Hopefully he won't suffer with this new plan, given that he is getting opioids and has a doctor who will prescribe them!
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