A family member, after years of taking Ropinerol with resulting augmentation to the point of its no longer having sufficient effect, has abruptly had the prescription for Ropinerol terminated, and another dopamine agonist prescribed in its place. In the initial days, it is proving completely ineffective, and she is going through hell.
My questions:
Are there tried and trusted protocols for taking people off Ropinerol? Are there references available for these?
What is the evidence for her being told that she would "have to give it a week"?
Any other advice?
With thanks.
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ticheroasteri
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Ropinirole and other dopamine agonists are no longer the first-line treatment for RLS, gabapentin or pregabalin is. Up to 70% of patients will suffer from augmentation which believe me your family member doesn't want. It used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. Also has your family member had their ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If your family member hasn't had their ferritin checked, they should ask their doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have their test in the morning. When your family member gets the results, s/he should ask for their ferritin and transferrin saturation (TSAT) numbers. If their ferritin is less than 100 or their transferrin saturation is less than 20 s/he should ask for an iron infusion to quickly bring it up as this will help their withdrawal. To come off ropinirole, reduce by .25 mg every 2 weeks or so. Your family member will have increased symptoms. Your family member may need to reduce more slowly or with a smaller amount. Your family member should wait until the increased symptoms from each reduction has settled before going to the next one. Your family member will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as your family member nears the end. But in the long run, your family member will be glad s/he came off it. On the gabapentin or pregabalin, beginning dose is usually 300 mg gabapentin (75 mg pregabalin). (Pregabalin is more expensive than gabapentin in the US.) your family member should start it 3 weeks before s/he is off ropinirole although it won't be fully effective until your family member is off it for several weeks. After that increase it by 100 mg (25 mg pregabalin) every couple of days until s/he finds the dose that works. Take it 1-2 hours before bedtime. If s/he needs more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If s/he needs more than 1200 mg, take the extra 6 hours before bedtime. (Your family member doesn't need to divide the doses on 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 of pregabalin) daily." If your family member takes magnesium s/he should take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of it and if your family member takes calcium s/he shouldn't take it within 2 hours. Check out the Mayo Clinic Updated Algorithm on RLS which will tell your family member everything s/he wants to know including about its treatment and refer their doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as theirs obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Very kind of you to take the time for such a full reply.
I have already sent the Mayo Clinic guidelines and the Condon article about iron onto my sister (the family member in question). There will be an attempt to pass these on to her doctors, who seem very uninformed on current guidelines! Your suggestion regarding how to come off Ropinerol is very useful. She was told none of that. I shall pass on your advice. Thank you!
If her doctors do not read the Mayo article and continue to try to keep her on a dopamine agonist she may need to change doctors. If so, if you tell me where she lives I might be able to give you the name of a doctor who is knowledgeable.
I second everything Sue Johnson has said here, I was on ropinirole for six years and it is absolutely the worst drug to be on long-term for restless leg. Getting off it is really really difficult.
PS She was already on Pregabalin as well as the Ropinerol. Very severe situation. We are planning a private visit to the neurologist. (It’s difficult for me to help, as I don’t live in the UK. )
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, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If your family member is 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.
Is she in the UK? What drug was substituted and what dose? If it's not the dose equivalent of Ropinirole, she'll go straight into dopamine agonist withdrawal, which as she is discovering, is hell on earth!Sadly, doctors know zero about this disease or the up to date research and treatments SueJohnson has set out everything your sister needs to know.
Normally, I would always say trust your doctor, but in the case of RLS, that doesn't apply! You or she must research for yourselves..Start with the Mayo algorithm.
The more you learn, the better treatment you'll receive. You have to educate your doctors because they're not even taught the basics.
Her best bet is to go back on the previous dose of Ropinirole. Split the dose, taking half 3 hour's before bed, the other half one hour before bed. Then slowly reduce by 0.25mg every 2 weeks with the help of codeine, tramadol or oxycodone to settle the increased symptoms with each reduction.
Then follow Sue's advice on iron supplements and starting pregabalin/gabapentin.
There is hope. Many of us have managed to get off dopamine agonists and our RLS is now controlled.
GPs are now gradually becoming better informed but over 10 years ago they knew nothing and we RLS sufferers had to educate them.When pramipexole stopped working for me my neurologist (not GP) put me on rotigotine patches.
She said I should try & manage at least 7 days between drugs but if it was unbearable then "just switch over after at least a couple of days".
On day one my whole body shook non stop. It was so frightening I started the patches on day 2 .
Back then no British neurologist mentioned augmentation/the Mayo Clinic etc etc.
I had the same problem you write about: my physician had me transition off pramipexole with Sinemet (carbodopa-levodopa)--both dopamine agonists. At the time I had not discovered HealhUnlocked and was unaware of the problem created by my PCP's recommendation. However I made the transition quite easily by reducing the pramipexole a small amount every two weeks and adding an equivalent amount of Sinemet. I did this over an 8 week period and had no ill effects of any kind. I'm writing this to you just to emphasize the need to made the transition slowly over a period of several weeks or even months in some cases. I now have the problem of getting of Sinemet which has even a faster augmentation time that pramipexole. I'm trying to get an appointment with Dr. Ondo at Methodist Hospital in Houston, Texas which is a 5 hour drive from my city of Arlington, TX. He is one of the leading RLS specialists in the U.S. After an initial in-person visit, other appointments can be virtual.
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