Sorry this is so long. I am looking for advice from you all. In 2021 I was given buprenorphine (by Dr. B in California- I am in Arizona) to come off .5 mg ropinerole. I was on 1 mg ropinerole for over 15 years. I successfully (with much difficulty) withdrew from it but after almost a month had such severe anxiety I was hospitalized for it because I had thoughts of why should I go on like this. I begged the doctor who was consulting with Dr. B to put me on the Neupro patch after that since my legs were still so bad. I have been on 2 mg patch since April 2021. (not realizing that I should NEVER have gone back on a DA). The doctors have prescribed numerous opioids to help my rls from tramadol, codeine, oxycodone before and after 2021. They all cause severe anxiety and agitation. I also get unusual bloating, gas, diarrhea. and stomach pains. The doctors think it’s all in my head, however, I have finally figured out this gut-brain problem is real. I even get these symptoms when I try medical marijuana gummies and or vaping. Also with some of the insomnia medications for sleep. I had a mini gastric bypass in 2008 which was converted to a RNY in 2018 which could be the issue. I fear that the opioids cause slow gut motility. (hence all these stomach issues and brain anxiety- but I have no life events that are causing the anxiety).
I want to try to withdraw from the 2 mg Neupro patch as I fear I may be augmenting again, but don’t know what else to do to help with the first month of withdrawals as I cannot go through the terrible stomach-anxiety issues. Also don’t know what I will be able to take moving forward to stop the rls.
I presently take 900 mg Horizant and 2 mg. Neupro. I have a neurologist willing to prescribe buprenorphine or methadone or any opiods to assist me. My iron studies are all good, just recently done. Hopefully others have advice if they have gone through this. Thank you!
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Oh wow. You've had a terrible time.There is definitely an issue with dopamine agonists causing severe anxiety and depression as you come off them.
It can cause DAWS (dopamine agonist withdrawal syndrome) for a minority.
And opioids are known to slow down gut motility. That's why many people suffer constipation.
And opioids definitely cause severe anxiety/panic attacks for many people.
You can try to sort out your gut issues so that the withdrawal from Neupro is a little less traumatic.
Start using a really good probiotic. Symprove or VSL. Add prebiotics like onions, asparagus, to your diet. Eat lots of varied greens and nuts and seeds.
But you will need to work with your neurologist and gastro doctor to ensure the gut issues are controlled.
I did get severe anxiety/PTSD coming off dopamine agonists. But no stomach problems.
Buprenorphine can cause constipation for many people so you will need to ensure the gastro doctor works with you.
Go slowly.
Horizant should act as a sedating med to counter opioid induced anxiety.
I did get panic attacks when I started Buprenorphine. I always get panic attacks on opioids at first. But adding a small dose of pregabalin helped and I then reduced the pregabalin.
So- if and when you start Buprenorphine, hopefully you will have improved your gut microbiome and you can increase horizant to reduce opioid anxiety.
When your body adjusts- you can slowly reduce.
In the USA the Buprenorphine pills start at 2mg. Here in the UK- 0.2mg. So we start at much lower doses. As a result the average UK dose is lower than the average US dose.
You can get Suboxone which contains naloxone. Naloxone helps reduce constipation and therefore might reduce your gut issues.
To come off neupro 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 you would normally reduce by .25 mg ropinirole every 2 weeks. If this is too much to reduce by you can get an inexpensive jewelry scale that measures down to .01 gram from Amazon for around $11 and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks.
The Horizant won't help you much while you are on a DA but should begin to help you once you are off the DA and your withdrawal symptoms have settled.
Buspar is safe for RLS and will help your anxiety.
When you say your iron studies are good, I assume your ferritin is over 100??
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.
Hi thank you for all the suggestions. When I mention the gut brain theory to my doctors they think I’m nuts. They claim, of course, it is IBS and to manage my anxiety to help it. But I believe the anxiety comes about from the slowed gut from the medications including when I take marijuana if my rls are bad. Some nights my rls is fine.
In looking back to some sketchy notes I had written in March of 2021, I took buprenorphine for less than a week then tried oxy, tramadol and even Ambien. I was out on Buspar for anxiety and told to raise my sertraline
When I was taking Buspar I landed in the hospital and was put on Mirtazapine, and trazodone for severe depression. I still take 7.5 mg Mirtazapine (was on sertraline for years) and know it causes rls but the only antidepressant they claim won’t cause Rls is Wellbutrin and the psychiatrists say it will cause me much worsened anxiety.
Meds I take are 7.5 mg mirtazapine, 20 mg pantoprazole, 2 mg neupro patch, 900 mg Horizant, in the morning: bariatric multivitamin, magnesium malate, zinc, folate, vitamin D3, vitamin k2, calcium. In the evening I take magnesium glycinate. I take many of these due to severe osteoporosis and not being able to absorption of vitamins due to the RNY.
When I decide to go off the 2 mg patch (since I need to have a withdrawal mindset first) do I go from 2 mg to 1 mg first? Or taper that even slower and to what amount and for how long?
Once I am down to 1 mg patch what would the taper schedule be, especially if I can’t get ropinerole ( the ones in the house exp 2021 and I assume are no longer good?) Do some people have to stay on a very low dose DA because they can’t take an opioid? What is the highest dosage people take for Horizant to be effective? Even when I started Horizant I almost stopped it because it caused a lot of irritability and agitation feelings and anxiety.
I do not believe that my stomach is going to heal well as I have had problems with it since 2008. It’s been just awful and I have seen a number of GI docs.
My ferritin levels were 216 on January 7, 2025
So the Neupro 2 mg patch is equivalent to 3 mg of ropinerole? Holy cow I never raised the ropinerole for over 15 years past 1 mg and now this? It will be even harder to come off! Yikes
If you can't get ropinirole you can cut the patch as I mentioned above. The first reduction you would take a 1 mg patch and 5/6 th of a second 1 mg patch. You would continue reducing by 1/6 th of a patch every 2 weeks. But it would be far easier to ask your doctor to prescribe the ropinirole.
900 mg of Horizant won't help much more if at all than 600 mg.
Joolsg has good advice for your gut issues.
Pantoprazole is a proton pump inhibitor and they often make RLS worse but you need it and I don't know of a safe substitute.
Trazodone is safe for RLS and a good antidepressant and helps anxiety and insomnia. I assume you are not taking sertraline now which makes RLS worse.
Mirtazapine can make RLS worse. I would change to trazodone.
Thank you for the advice! I have not been on this site for many years. Are you a physician? How do you know so much about this? I wish I had known a lot more than I do.
Since Neupro patch is a 24 hour medication would it best to cut the 2 mg patch to 1 mg for two weeks and then cut a 1 mg patch in half for a few weeks and perhaps then move to the short acting ropinerole? Or is that too much of a jump? I dont know why the rls gurus say to do that? They actually say to just cut the 2 mg to 1 mg patch and then just stop from there.
The psychiatrist told me that Trazodone is a weak antidepressant so he didn't suggest going to that from Mirtazapine.
If I do switch from Mirtazapine to Trazodone do I stop Mirtazapine cold turkey one night and start Trazodone? What is the best amount to take if I was on 7.5 mg Mirtazapine?
Is there a site that compares the dosages of each DA to each other?
No I am not a doctor. I went through what many others did. I augmented on ropinirole and was then put on gabapentin and my symptoms are now completely controlled. I am retired and decided to learn everything I could about RLS and pay it forward by helping others.
If Tramadol did not work for then it may be the dose was too low, I get no benefit from 50 mg but 150 mg works most of the time (my sister takes 200mg). Everyone is different so don't give up if you haven't found the right combination yet. I have also noticed the Tramadol works better as a preventative rather than waiting for the RLS before I take it. I use Desvanlafexor for depression which does not aggravate RLS for me, however this may be contributing to my high blood pressure, so I am considering Ketamine treatment.
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Anyone taking buprenorphine tablet (Temgesic) for RLS/other issues in India, or know how to get it in India?
Weaning off Neupro Patch
why docs don’t want to prescribe opioids for RLS….😔
