For many years I have suffered with severe restless leg syndrome, but recent changes in the way, my medication is administered and change in dosage has greatly reduced my nightly RLS episodes. Below is the medication and schedule.
6 AM - 3 mg Ropinirole
8 PM - 5 mg Ropinirole
Because the medication is being taken 14 hours apart my physician aloud me to increase the daily dosage as posted above. Moreover, for the past 15 months, I underwent 12 months of chemotherapy and three months of radiation to treat non-Hodgkins lymphoma B Cell and since the change in my meds and schedule, I have only had 5 nights where I encountered mild RLS symptoms for over a year.
Finally, because I was dealing with cancer treatments my daughter purchased CBD cream, hoping it would help? IT DID HELP.
I’m not saying the changes that were made to my meds and schedule will work for all? But it is worth the try. Ps, I am 66 years old and in remission.
Jb
Written by
Fuzyjohnny
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Sadly you are taking twice the maximum amount of ropinirole and ropinirole is no longer the first line treatment for RLS. By definition you are suffering from augmentation.
Since you are suffering from non-Hodgkins lymphoma B Cell I normally wouldn't give you my usual advice on coming off ropinirole and switching to the the now first line treatment for RLS since you have enough on your plate right now how ever looking at your profile you say you "developed severe gambling habits that resulted in over $350,000 in gambling losses." The ropinirole caused that! If you are in the UK, Joolsg will be along to direct you to a lawyer.
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 if needed.
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 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.
On the gabapentin or pregabalin, the beginning dose is usually 300 mg gabapentin (75 mg pregabalin). (Pregabalin is more expensive than gabapentin in the US.) 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 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 divide the doses on 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin)."
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 or antacids don't take it within 2 hours for the same reason (not sure about pregabalin).
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. If not ask your doctor for a full iron panel. Stop taking any iron supplements 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 uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
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.
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.
Thank you very much for your insights and observations. I guess I am not doing better, and have a lot to discuss with my PCP.
As for past gambling issues, even though my dosage increased I have not gambled for some time now, however it could have been that I was so ill from the effects from chemo I simply had no energy. Nonetheless, I have a lot to consider and ponder and should seek better guidance. Once again, thank you and God bless you..
Ropinirole is WHY your RLS became so bad. And now your doctor has condemned you to further severe drug-induced worsening by increasing your dose above the maximum.
You WILL experience severe RLS again soon.
And I've just read your bio. YOU GAMBLED $THOUSANDS.
THAT IS A RED FLAG.
In the UK we can sue the doctors who failed to warn about gambling on Requip. If you're in the USA there will be different laws BUT your doctor is clearly acting negligently in failing to get you OFF the dangerous drugs that caused gambling and augmentation.
If you tell me what city and state you are in I may be able to give you the name of a knowledgeable RLS doctor. You need a specialist for that not a PCP.
Unfortunately the only name I have is Dr George Uhl a neurologist at the Raymond G. Murphy Department of Veterans Affairs Medical Center in Albuquerque. He might see non-veterans. You can call the Center at Phone: (505) 265-1711 to ask. He also might do telemedicine so you could ask about that too.
Congratulations on your remission status! I totally concur with the rest of the previous responses. You must get off of this DA as soon as possible and find a doctor in your area who is knowledgeable. Sue can help you with that. GOOD LUCK!
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Made it through the "holiday" (many thanks for your support) - what now?
I have started weaning off ropinirole
Medication help
Ropinirole and Pregablin
