Good Morning. I've suffered with restless legs for the best part of 50 years without wanting to boar anyone press-ups used to be my go to cure. But as I've got older they no longer work. I've been on Gabapentin for three or more years, initially it worked fine, I take a 100mg at noon a 300mg early evening and a 300mg before bed. I've made it my task not to increase the dose because of the awareness of side effects and withdrawal should I need to. 18 months ago my legs started crawling all day long, the Doctor added Ropinirole 0.5mg one a day at night. The crawling stopped. Although I still had nights where my RLS was worse I've never been able to attribute it to any food or drink.A physiotherapist suggested I try Magnesium which I did but Magnesium Citrate, still things seemed a bit better. A friend suggested I changed to Magnesium Glycinate which I did and things got better, shortly after the start of the Glycinate Ropinirole wasn't available due to manufacturing decisions. So the doctor changed me to Pramipexole 0.088mg one a day, transition went smoothly. Then after about 15days a wound that I had got on my shin through stupidity but had healed started going deep red, under pressure from family I went to see the doctor. After much head scratching I was told that it was Post Inflammatory Hyper Pigmentation and that it would heal in 6 to 12 months. A week later both my legs broke out in red spots I want back to the doctor's and was prescribed Fexofenadine, 180mg one a day. Three days later I was back at the doctor's because things were getting worse, through my previous experiences it came to me that Pramipexole could be the antagonist. The doctor gave me Hydrocortisone cream to run alongside the Fexofenadine but to take up to three times a day. He said If I think Pramipexole could be the cause, stop talking it. It's now 4 days since my last Pramipexole and things are getting back to normal no sign of the Post Inflammatory Hyper Pigmentation or red spots. My RLS was just keeping me awake but not untolerable.
There's a big lesson, be careful what medications you are prescribed, what works for one could be horrible for someone else and we all know how difficult living with RLS and medications can be.
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whitney2044
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Your GP should NEVER have prescribed either Ropinirole or Pramipexole.Both these meds are dopamine agonists. Dopamine agonists are no longer prescribed by knowledgeable doctors because of the very high rate of drug induced worsening and Impulse Control Disorder.
I'm so pleased you're off them.
What your GP should have done first, before prescribing meds, was to order full panel fasting blood tests and increased your serum ferritin above 100, preferably 200 which resolvesresolves the majority of RLS without the need for meds.
Most people experience RLS in the early evening and during the night because it follows the dopamine cycle. Most do not experience RLS in the daytime. I suspect you get it in the day because your Gabapentin dose is too low for the night.
So gabapentin should be taken in the evening and night in split doses of 600mg two hours apart. Most GPs follow pain prescribing guidelines. They are unaware of how to prescribe for RLS.
Your 700mg dose is below the average dose for RLS. Have a look at RLS-UK website, which sets out the meds for RLS, the average and max dose and timings.
Magnesium interferes with gabapentin absorption, so take it 3 hour's apart from any gabapentin.
Try changing your gabapentin dose and timing. Increase slowly by 100mg every 2 days and add the 100mg to the last dose of the evening first.
Increase dose up to 1200mg gabapentin and take 600mg early evening, 600mg just before bed.
In the meantime, arrange those blood tests and ask for the actual numbers. Your GP will tell you the results are 'normal' but for RLS, they need to be much higher.
Please also report the side effects of Ropinirole and Pramipexole via the Yellow Card Scheme below. Fill in allergies.
We are trying to raise awareness of how dangerous these drugs are. GPs aren't taught anything about RLS, or the dangers of dopamine agonists ( Ropinirole and Pramipexole) and the only way to raise awareness is to keep filing reports of dangerous side effects.
Your side effects probably saved you a LOT of suffering further down the line.
Hi whitney2044, so sorry to read your story and I agree with everything you say, we sufferers are not experts in the medical field and rely on and trust the professionals. The thing is, you can’t where RLS is concerned as so few take the time to research the information that is out there ie; Mayo Clinic in America. If they did they wouldn’t put us on the slippery path to Dopamine Augmentation. I was on 6mg Ropinirole a day for years and Nupro patches 4mg prior to that both Dopamine agonists and it’s taken me from October 2022 until now to reduce to 1mg with a little help from illegal (in UK) substances. So I send my best wishes with your fight.
I’ve said it before and will say it again that I’m indebted to RLS-UK and Health Unlocked for the support and advice provided, by people who know what they are talking about as they are fellow sufferers so UP the REVOLUTION today being RLS awareness day.
To elaborate on what Joolsg said. When you see your doctor ask 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. 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.
Since you just stopped Pramipexole you may find your symptoms get worse for a little while but should settle down soon. If not, then you are lucky.
On the gabapentin I know you don't want to increase it because of the side effects but since you have been taking it for 3 years unless you have tried to increase it before and had side effects you couldn't put up with, it is unlikely you will get any now. Also you are afraid of withdrawal, but if increasing it causes side effects, you can immediately go back to your current dose. And although it is very unlikely you will ever need to withdraw completely from gabapentin as long as you do so very slowly you will have no withdrawal effects.
Unless you have symptoms during the day there is no reason to take it at noon as Joolsg mentioned. 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin." As Joolsg mentioned since you take magnesium and that includes even in a multivitamin, don't take it within 3 hours of taking gabapentin as it will interfere with the absorption of gabapentin and don't take calcium within 2 hours for the same reason. 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...
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, 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, 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.
Blimey, what a minefield, thank you I'll try altering the time I take the Gabapentin and change the time I take Magnesium Glycinate. I've already got compression socks, weight blanket, Revitive machine, and have had the shower treatment. At least now I've got something else to work on. Thank you once again for great advice.
I don't think I can offer much advice since I have only been taking gabapentin for a little over a month. I would suggest that you contact Sue Johnson who has given a lot of help. She has a lot more experience with gabapentin than me.
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