My 87 year old mother (who also has Parkinson's) currently takes ropinirole 4 times a day. I have started tapering the ropinirole (with her neurologist's approval) due to augmentation and frequent, intermittent visual/auditory hallucinations and delusions. She had been on a grand total of 9 mg earlier this year but I started the taper Sept 1 from 1mg/1mg/1mg/2mg. So thankful for the recommendations on this site to decrease by no more than 0.25 mg every two weeks as she did not tolerate decreasing two of the doses by 0.5 mg each, like her neurologist suggested!
She is currently at 0.5mg/1mg/0.5mg/2mg. What dose should I start with next? The noontime dose? Should the goal be to decrease the daytime doses down to zero then slowly work on the bedtime dose? She is currently also taking gabapentin 100 mg morning and noon and 300 mg at bedtime, which seems to be helpful. Gabapentin was started in June due to the ropinirole no longer being effective in managing RLS symptoms.
Of note, my mother had her first iron infusion 3 weeks ago. I will request iron studies two months out from the iron infusion. Thank you for all the excellent information about the Mayo Clinic algorithm! In my messages to physicians, I sent links to this study when I requested the ropinirole taper and the iron infusion. Very helpful!
Written by
Quiddle
To view profiles and participate in discussions please or .
Yes I would decrease the noontime dose next and then the daytime doses although the last doses will be the hardest so she can decide what time of day she wants her suffering to be - daytime or nighttime.
You have probably seen the following so forgive me for repeating it but just in case you haven't. The further along she goes in her weaning off it she may need to reduce more slowly or with a smaller amount. She should wait until the increased symptoms from each reduction has settled before going to the next one. She will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as she nears the end. Some have used kratom or cannabis temporarily to help.
On the gabapentin once her daytime symptoms have gone, she can switch to taking it all at night. She can also increase it up to 900 mg before she comes off the ropinirole but shouldn't increase it more than that until her symptoms from coming off ropinirole have settled. Then she can increase it by100 mg every couple of days until she finds the dose that controls her symptoms. She should take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If she needs more than 600 mg she should take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If she needs more than 1200 mg, she should take the extra 6 hours before bedtime. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin" If she takes magnesium even in a multivitamin, she should take it at least 3 hours before or after taking gabapentin ( as it will interfere with the absorption of gabapentin and if she takes calcium she shouldn't take it within 2 hours for the same reason. She might find it easier to take pregabalin as it can be taken all at the same time. The equivalent dose is 6 times the gabapentin and she can switch directly.
I am surprised she needed an iron infusion since people with Parkinson's usually have plenty of iron. Did she have her ferritin tested? If so what was it?
Again you may have seen this in my previous posts: 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, eating late at night, estrogen including HRT, 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, 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 she 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.
Thank you for all the suggestions! I will decrease the noontime dose next. My mom's iron studies (prior to the iron infusion) was ferritin 71.8, iron 62, saturation 18% and transferrin 248.9. Medications she also takes are (in addition to the ones I already mentioned) : carbidopa-levodopa, megestrol, cholecalciferol, magnesium (oxide at present - I will switch her to gylcinate), midodrine, weekly bisacodyl and warfarin. She occasionally takes OTC Dayquil or Nyquil, acetaminophen and Benadryl.
She was started on ropinirole 8 years ago in 2015. Ropinirole was the first medication that her neurologist started her on for the Parkinson's, 2 mg in the AM. He then added carbidopa-levadopa 6 months later. My mom cannot remember if she had RLS symptoms in 2015 or if symptoms showed up after starting ropinirole. I could find no documented doctor visits in her chart between 2015 and 2017, when she switched to another neurologist. Could it be possible that ropinirole augmentation symptoms mimicked RLS symptoms two years later? I realize that RLS is a common association with Parkinson's so maybe she had RLS all along. It does make me wonder, though.
No I don't think the augmentation mimicked RLS. She must have had it and it hadn't shown up yet.
With her saturation below 20% she should have an iron infusion so it is good she had one.
Benadryl a sedating antihistamine is known to make RLS worse. A safe substitute is claritin, allegra or zyrtec.
NyQuil contains the sedating antihistamine doxylamine so that will also make RLS worse.
If she needs something to sleep I would recommend Lunesta.
Warfarin may or may not be safe for RLS. One person on the forum said it made their RLS worse. A safe substitute is dipyridamole. You might want to discuss this with your doctor. It is a blood thinner but has helped some people with their RLS on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib...sciencedirect.com/science/a...movementdisorders.onlinelib...
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Ropinirole and augmentation, when do I change drugs and how will I cope?
Changing medication from Ropinirole to Pramipexole. How to make it?
Please advise:What should I take for RLS after getting off Pramipexole and Ropinirole?
Ropinirole Reduction
