I have had RLS ever since I can remember, but it was once moderate and controllable.Last year I received 8 1/2 weeks of radiation therapy for prostate cancer. Hopefully the cancer is under control but it was during that treatment time that I began with severe RLS. Despite numerous trials of medications, exercise, diet, etc. I cannot tell you how many sleepless nights I have spent.
The latest thing my neurologist is trying is the Neupro patch. In spite of the almost $400 a month price tag WITH insurance, I got absolutely no relief with the 1 mg. dosing. After two weeks on 1 mg. and several calls to my doc., he finally upped the dosage to 2 mg. Still no relief. It's now been 10 days on the 2 mg. with no apparent positive or negative results. I feel as though I could use a band-aid and get the same results.
I called my doc. and asked about a dosage change to 3 mg., but he hasn't called me back. I wanted to ask him if I could try ropinirole along with the patch, but I have no confidence he will call me back on that one either.
So what would be your opinion on using ropinirole with 2 mg. Neupro and in what dosage? Thank you so much!
P S. I don't blame Neupro for the ineffictiveness-I think I just haven't gotten the dosage right
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Dirtfisher112746
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I have suffered for years with RLS. Have used Pamiprexel with moderate success. Oxycodone works real well if you can find a provider to prescribe it. I’ve been using Kratom for the past two years with great success.. Six capsules of the red mengda. Works in twenty minutes. My pain management doctor said if it works she doesn’t have a problem with it. This past week I began seeing a new general practitioner who prescribed Gadapentin. I’m hopeful this works. I would like to stop the Kratom for a few months. I don’t think it’s wise to stay on any medication for to long. Good luck
That's great that your doctor has prescribed gabapentin. You may or may not know the following: When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice. Beginning dose is usually 300 mg gabapentin . It will take 3 weeks before it is fully effective. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1 to 2 hours before bedtime. 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. Most of the side effects of gabapentin 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 daily." If you take magnesium don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of the gabapentin. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it at Https://mayoclinicproceedings.org/a...
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’ve been using Kratom for several years. I’m hoping the gabapentin will work. Yesterday was my first day on gabapentin and I didn’t notice any improvement. Kratom works great. Not sure if the long term effects though.
I used kratom for a year or two with good results but finally had to quit it after building up such a tolerance that I was taking 36 grams per day. Do you mind sharing how much kratom you have ever used per day? (I was finally rescued by obtaining a prescription for low-dose methadone.) Thank you.
I take six capsules usually after the RLS kicks in. It only take twenty minutes for it to work. I use the Kratom red mengda.. I’ve been using it for several years and haven’t seem to build up much of a tolerance to it. Maybe try something else for a week or longer to give your system a break. Mix up your treatment. If I had to use nothing but pramiprexle I would be miserable.
I googled 00 capsules and it says that they hold 0.735 grams each, so 6 caps would be about 4.4 grams - does that seem right? So are you saying that you are using the kratom only as an adjunct to daily use of pramipexole? And you just use kratom every so often, when the prami isn't enough?
When I was using kratom, it was without any other meds, and every night, which is why my tolerance gradually built up to 36 grams per day. I no longer use it at all in that the 10 mg of methadone per day has completely stopped my RLS symptoms.
I presume that you are aware of the risk of "augmentation" when using dopamine agonists such as pramipexole? At any rate, best of luck to you.
I use the Kratom exclusively. The pramiprexel is my back up. Methadone is a great treatment for RLS as is any other opiate. I’ve used oxycodone exclusively however doctors are very reluctant to prescribe it. The only way I can get it is to go to UH hospital pain management. They do prescribe it for my back. I try to stay off the opiates because they mess with my thinking to much. I’m hopeful modern science with come up with a real treatment or cure sometime in the future. In this moment I will continue to experiment with the treatments I think a reasonable safe for long term care. Kratom ( red mengda) 6 capsules works in twenty minutes.
I see that you only take the kratom when symptoms appear. On average, about how many times per week would that be? Also, does UH mean U. of Houston? Thanks.
we are all different. 2mg Neupro patch has worked for me over the las five years but I think it’s effectiveness is lessening. I don’t think adding another dopamine agonist will help you. You may find better results adding a low dose of Tramadol or similar- I take 200mg
If the Neupro patch isn't effective, then I imagine you are on some antagonistic medications.Antihistamines, antidepressants, statins and a host of other meds are all bad for RLS.
Also there is a whole list of foods and drinks that set off RLS. Search on this site for lists. Keep a diary of intakes.
Good luck.
If you give us a list of your medications, we can advise better.
Here's a list of meds- what I WAS taking and what I'm now taking:Then -81 mg aspirin, 20 mg.Atorvastatin, B12 5000mcg,Clonazepam .5 mg, Mirapax 2 1. 5mg , Multivitamin 200mcg., meclizine, Meloxicam when needed, 1/2 tablet Hydroocodone when I absolutely can't stand it anymore!
Now- no Clonazepam, aspirin and statin the same, Mirapax- 1\2 1.5 mg, ,Meclizine and Meloxicam rarely, 1/2 vicodin when the rls has me at my wits end!
I take Lercandipine (statin). Aspirin, Cansesartan, Ezalo comp pack and Thyroid. I also take only Temgesic for RLS. Except for anxiety and a little less social than normal, Temgesic has saved my life.
Yes Sue it does. I have on Norspan and now Temgesic for 2 years. I may ask my cardiologist when I see him if I can change the statin Lercandipine. I thought I saw in another post that the Ezalo comp pack was ok with RLS?
Mirapex contains pramipexole which is another dopamine agonist like Neupro and ropinirole. If you are not getting relief from the Neupro patch and Mirapex, you may be augmenting.
Meclizine blocks the dopamine receptors in the brain and makes RLS worse.
Anti-nausea medicines that are safe for RLS are, Kytril (Sustol, Granisetron, Sancuso), Anzemet (Dolasetron), Zofran (ondansetron)
And of course statins make RLS worse. NEXLIZET is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) reduces cholesterol but It doesn't reduce cholesterol as fast as the statins and is recommended by Chris Columbus. However there are a few reports in the FDA that it made RLS worse. And then there is Triglide which seems safe.
We are fortunate in Scotland that medication is free I tried both and found they did not help and the side effects were terrible. I am now taking 1 gabapentin at night then two co codamol it's not perfect but I do get around 6hrs sleep without the side effects throughout the following day
If you are only getting 6 hours sleep and the combination is not perfect, you probably need to increase the gabapentin. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." Ask your doctor for 100 mg capsules and increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. 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. If you take magnesium, take it at least 3 hours before gabapentin as it interferes with the absorption of gabapentin. Have you had your ferritin tested? If so what was it? Increasing it to 100 or more reduces symptoms in 60% of people.
Hi Dirtfisher112746. So glad your Prostate Cancer is now under control but all my sympathy with worsening RLS. I was prescribed Nupro patches many years ago and worked great to start with but under medical supervision it increased from 1 to 4mg slow 24 hour release but in the end the patches just made RLS worse so was then prescribed Ropinirole which was incredible to start with then the same pattern arose as with the patches, got worse so had to increase dose to finally 6mg per day. I am now having to come off Ropinirole as it’s just making my RLS worse and worse and will take about another 10 months to finally get it out of my system
I’m in the Uk and we apparently are about 10 years behind the USA in RLS research and treatment so I’m very surprised to note that your consultant recommended the patches and I would stay well clear of Ropinirole as this Forum is full of stories about its effects and the trauma’s members have gone through coming off Ropinirole. Look up Sue’s posts, she is a doctor on this forum and has lots of great advice on medication that won’t make your condition worse, also Joolsg based in Uk who’s trying to get RLS taught as part of doctors training is also a great source of information and perhaps you need to look at changing your Consultant
Hello Sue, not a Doctor eh 🤔 well you jolly well should be and specialised in RLS as your knowledge on the subject is very impressive. Anyway Doctor or not, thank you for all your advice and wise words, even gentle telling off is all greatly appreciated.
I would say stay away from Ropinirole. Don’t get me wrong, I was amazed with the results. First good nights sleep I had in years. However, as time went on I was getting break through RLS symptoms during the day and had to up the dose. Coupled to this I had the worst most vivid nightmares. Screaming, shouting and physically grabbing my husband in my sleep. To the point of drawing blood. I even ended up texting my daughter during an episode ask for help. I have no recollection of this but decided I needed to stop. Weaned myself off down to 0.5mg but really struggling again. Can only manage around 3.5 hours of sleep. Withdrawal is very hard. I would say my RLS is worse than ever now. Looking for more natural remedies instead. I would suggest try that first. Good luck.
Yes ropinirole augmentation can be terrible. I think you have probably come down too fast as you reduced by 1.5 mg in 8 days. The usual recommendation is to 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 may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. But in the long run, you will be glad you came off it. Dopamine agonists like ropinirole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off ropinirole 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. 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 split the doses with pregabalin) Most of the side effects of gabapentin or pregabalin 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 pregabalin) daily." Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Hi Sue, thank you for taking the time to respond. I was originally prescribed Pregablin for Fibromyalgia and was in it for a year. I switched to Duloxetine due to weight gain plus it wasn’t effective for the pain. I have a weighted blanket which does help a bit. I am also cutting down in sugar to see if this helps but to be honest I don’t have much anyway. Already follow a gluten and dairy free diet and never have caffeine after 6pm.
I have had slightly better sleep the last 2 nights but it is the last 0.25mg I am struggling to stop. I was regularly exercising until I fractured my foot in June. I am now able to walk but foot still not right so a bit limited to how much I can excercise. Swimming is too painful due to the type of injury. I am hoping as I start to feel more myself I can increase my exercise gradually. Suffering from terrible brain zaps for 4 weeks now, they are gradually getting better now but very stiff and sore with my Fibromyalgia. It’s a viscous circle but am determined to get better.
Duloxetine which is an antidepressant makes RLS worse for many. Safe alternatives are trazodone and Wellbutrin. On the pregabalin you might want to try switching to gabapentin. Although they are basically the same drug except you need to divide the doses over 600 mg, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other.
You want more natural remedies but it is likely you will need gabapentin or pregabalin. But 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, meditation and yoga.
In my post below I mentioned that i was taking nicotinamide riboside. Howere, a few days ago a paper was published with data suggesting it could be involved neoplastic and metastatic processes. Hence, please disregard this.
Here is the reference: A bioluminescent-based probe for in vivo non-invasive monitoring of nicotinamide riboside uptake reveals a link between metastasis and NAD+ metabolism": sciencedirect.com/science/a...
Hello,I'm a doctor too, but was never taught about RLS. But to be fair I graduated more than 20 years ago. Now I have both Parkinson’s, migraines, essential tremor and RLS. I already went through RLS augmentation.
At the moment, I managed to keep it rather calm with a combination of:
- iron perfusion in August: this one bag got me from ferritin level of 75 to 275. I'll try to avoid repeating as iron deposits are found at autopsy of pwPD.
- exercise: alone, at least at this stage, it's not enough. However, I noticed that since I got iron perfusion, the nights I'm not sleeping occur when I didn't exercise nor walk for 2 to 3 days.
- somebody on a thiamine for Parkinson’s facebook group mentioned she managed to control her RLS with nicotinamide riboside. The brand name is Tru Niagen. It is a metabolite of niacin (vitamin B3). It just happens that I started Vit.B3 2 weeks before the iron perfusion. Obviously, it didn't help at the time. However, since my RLS got somehow under control with the iron, as suggested, sometimes I experienced relapses emergingin the evening and sometimes earlier with impatience sensations in the legs. Having read that testimonial and having Vit.B3 at home (I had stopped taking it), I took a capsule of 50 mg and I got a restful night.
I have to say though, there was a study published recently that showed in in vitro experiments a possible link between cancer and nicotinamide riboside uptake. So I take it (Vit.B3, not nicotinamide riboside) from time to time.
With this regimen I am at this stage under control.
Nevertheless, I also read on this forum I believe a RLS - sufferer shared that tiny amounts of THC oil on his gums made him sleep through the night.
I managed to get some and it's on my night table.
I saw a few studies pointing to an increased prevalence of bacterial overgrowth in the small bowel (SIBO) and suggestions that treating it could help with RLS.
Last piece of information: I experienced triggers, like many others. Mine are so far excess of sugary food in the afternoon/evening, and excess of levodopa.
I notice you listed melatonin on your profile page. That makes RLS worse in most people. Also you mentioned low B12 which also makes RLS worse in some people. 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, meditation and yoga.
dirtfisher,First of all congrats on completing your cancer treatment! I would definitely stay clear of both the Neupro and ropinirole! I started off with 1 mg of Neupro and eventually ended up taking 9 mg. ( with an enormous price tag) They are both Dopamine agonists and you will eventually end up with augmentation. They are great when they work, but living hell when it’s time to come off of them. I would inquire about gabapentin and obtaining a full iron panel. Good luck
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