Hi I am a 65 year old male been suffering with RLS for 30 year, I believe I started augmented with ropinirole last year , have episodes earlier in the day . I was up to 8mg of Ropinirole daily little bites off a 4mg pill when symptoms appeared, usually during trying to relax during the day or not moving much
went to a neurologist, and he prescribed continue taking ropinirole as I was 100mg of pregabalin and 200mg of ropinirole at 6pm and the same at bedtime and continue taking small amounts if I have episodes during the day. I don't know what his next step is , on weaning me off the ropinirole ,It seemed to be working for the first couple of wee I was getting a decent night sleep, but not it seems to be going back to more restless nites, I only get to visit with him every 3 months,
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Burnzy007
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I am confused as to how much ropinirole you are taking. If it is 8 mg you are on twice the dose. You obviously misspoke in saying 200 mg. In any case you are augmenting and need to come off it.
First off check if you are on the slow release ropinirole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut.
To come off ropinirole reduce by .25 mg every 2 weeks or so. Ask for a prescription of these if needed. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. 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. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed but they are not up-to-date on the current treatment recommendations. Pregabalin is more expensive than gabapentin in the US. So let me give you the instructions for both in case you want to change.
The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) Normally you would start them 3 weeks before you are off ropinirole although it won't be fully effective until you are off ropinirole for several weeks and your symptoms have settled. After you are off ropinirole for several weeks increase it by 100 mg gabapentin (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 split the doses with 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. 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 don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done. 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 not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 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 and refer your doctor to it if needed as many doctors do not know much about RLS or are not up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, 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, 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, C, 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. Keep a food diary to see if any food make your RLS worse.
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.
Sorry, I am taking ropinirole 2mg at 6 and 2mg at bed time , and I take 100mg of pregabalin at the same time and lately I have been tossing and turning at 1 am and will take another 2 m g of ropinirole to get to sleep. The new doctor added the pregabalin, I don't know what his next plan is yet, wait for my next appointment
If you need more ropinirole during the night don't take an extra 2 mg - that is half the maximum dose and you only need an extra .25 mg or 1/8 the amount. Can you call your doctor and ask him to prescribe .25 tablets? If not you can get an inexpensive jewelry scale on Amazon for around $11 that measures down to .01 gram and shave off a bit of the tablet and measure it to get down to the .25 mg. Do this ahead of when you might need it.
The pregabalin should be taken 1 to 2 hours before bedtime although it won't do you much good if any at this point.
Do read the Mayo Algorithm.
You don't need to wait to see your doctor to find out what his plan is. He obviously is not up to date on the treatment of RLS or s/he would never have prescribed ropinirole in the first place. And waiting 3 months between appointments is ridiculous. You need a new doctor. What city and state do you live in? I may be able to give you the name of a knowledgeable doctor.
You are amazing! I was prescribed ropinirole about ten years ago, and have slowly crip up to 4 to 8mg to augmenting started, that when I went to the neurologist, this was my first visit that he prescribed the Pregabalin 100mg x2 along with the Ropinirole.
I know I'am bad, He is in Sioux Falls SD and I am in Aberdeen SD 215 miles apart
hello—sorry you are having such a challenging time!! I was only on 1mg of ropinerole when the side effects made me switch. I am now taking pramipexole dihydrochloride .125 mg. So far it’s working I hope this helps! I didn’t have to wean myself off the ropinerole, just started taking pramipexole dihydrochloride—but my dosages are so much lower than what you are taking I really think you need to check with your doctor!
There is a RLS study currently being done showing DA will perpetuate the symptoms if continually taking them. .5mg of requip works for 6 months then your symptoms get worse so the dose is increased. At 1mg requip now works for 3 months so your dose is increased. 2mg now and your symptoms are 24/7 on some days with requip only working for a few days/hours. Up the dose to 3mg. As the dose increases the effect of the med decreases. This happened to me. I weaned my self off of requip and will be taking 100mg of tramadol instead. I feel so much better. I am hoping to decrease the tramadol over time. I think to myself...maybe my RLS was all drug induced and I never really had it. I am also 65.
I am 70 male, and was suffering from RLS for 30 odd years until I came off Ropinirole and started taking Gabapentin about a year ago. All my symptoms stopped within a few weeks and my life has changed completely. I can sleep, watch TV without standing up, go to the cinema, even flew to Barbados without so much as a twitch. Thoroughly recommend trying it. Jim Bartlett UK
Well done to all those who have gone cold turkey weaning themselves off ropinirole. I am 78 and am on 5mg of ropinirole a day. 1mg at 6pm, 3mg before bed and 1mg when I wake up about 4a.m. I must admit to being afraid to make a change as ropinirole is still working for me. Thanks for the advice others have give re making a change.
You are already experiencing augmentation as the maximum amount of ropinirole is 4 mg. Even 4 years ago you said "Sitting in a meeting in the afternoon or evening is out of the question." So it is not still working working. If it were working you wouldn't have those symptoms, Those are both signs of augmentation. And it will only get worse! I know you are afraid to come off it but you can do it as many others have and we are here to help you.
You are probably going to need a low dose opioid to help. I would recommend buprenorphine or methadone as they are long lasting. and they can really help you in getting off ropinirole. Most of the others last only 4 to 6 hours and need to be taken that often or you will have mini withdrawals. If you are prescribed one of the others be sure you are given enough to take them that often.
First off check if you are on the slow release ropinirole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut.
To come off ropinirole reduce by .25 mg every 2 weeks or so. Ask for a prescription of these if needed. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. 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. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed but they are not up-to-date on the current treatment recommendations. (Pregabalin is more expensive than gabapentin in the US.) Also don't let your doctor switch you to Neupro (rotigotine). He may tell you that is less likely to lead to augmentation but that has been disproved.
The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls the beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off ropinirole for several weeks and your symptoms have settled. After you are off ropinirole for several weeks 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 split the doses with 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. 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 don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."
Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done. 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 not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 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 and refer your doctor to it if needed as many doctors do not know much about RLS or are not up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory 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 (epsom salts), 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, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
Thanks again , I was hoping you would pop in. I really want to get off this ropinirole and have the ability to be able to sit back and rest and relax. I know it's not going to be and easy rd. I have been sitting back and following real close this amazing website, The knowledge and the incite of the people here, is a blessing
The only one I found that has average experience in treating RLS is Dr. Fanny Jaquez 1210 W 18th St Ste 101 Sioux Falls, SD 57104 (605) 328-8130. But that does not mean she is up to date. You might want to call and ask if she follows the Mayo Updated Algorithm and if she will prescribe opioids if she feels it is appropriate.
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