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Restless Legs Syndrome

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Ropinirole

Kjh100 profile image
9 Replies

Hi Guys, I'm in the process of reducing my dosage of Ropinirole. I was taking 4mg a night but after a few months Im down to 2mg. My Doctor has prescribed Gabapentin and told me while Im reducing the Ropinirole to introduce the Gabapentin. Im now taking 2mg of Ropinirole and 1200mg of Gabapentin.

Does this seem the right course of action. Has anyone else had the same advice from their Doctor.

This worked fine for a while and reducing the Ropinirole wasnt that bad. Its been 4 months since I started this process and my legs are getting worse and sleeping is becoming a major problem. Im also taking Zapain which my Doctor prescribed as I have also spent 4 months coming off Tramadol. As you can imagine its been a bit of an ordeal.

If anyone has had a similar experience introducing Gabapentin please let me know 🙏

Thanks KJH100

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9 Replies
SueJohnson profile image
SueJohnson

Gabapentin won't help you much until you have been off ropinirole for a few weeks. It is the coming off ropinirole which is making your RLS worse. 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. On the gabapentin take it 1-2 hours before bedtime. Since you are taking more than 600 mg take the extra 600 mg 4 hours before bedtime as it is not as well absorbed above 600 mg. Once you are off ropinirole for several weeks increase it by 100 mg every couple of days until you find the dose that works for you.If you need more than 1200 mg, take the extra 6 hours before bedtime. If you take magnesium take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of it and if you take calcium don't take it within 2 hours. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily." If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. 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. 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... The best prescription medicines for insomnia are Ambien and Lunesta. Ambien is advised only for short term or intermittent use but Lunesta is not. Always discuss these with your doctor.

SueJohnson profile image
SueJohnson

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 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.

Kjh100 profile image
Kjh100 in reply toSueJohnson

Thanks Sue for your advise and help . Will certainly stick it out till the end .

Joolsg profile image
Joolsg

I agree with Sue. The withdrawal symonds from Ropinirole are horrific. Your RLS becomes much, much worse and you'll get little sleep. Slow down the reduction. No more than 0.25mg every 2 weeks. The gabapentin starts to help around a month after you drop the last Ropinirole dose.

Stick with it. It gets worse before it gets better but you will notice a huge reduction in RLS severity.

Kjh100 profile image
Kjh100 in reply toJoolsg

Thanks for your help Jools , think im in for a rough ride but will get through it.

4inthemorning profile image
4inthemorning

I did a ropinirole taper back in February under the direction of Jon Hopkins RLS group. It was a three week taper reducing half a 1 mg tablet every three days, I was on 3 mg per night dosage.

When I asked why it was so quick compared to other taper protocols I had seen, they said makes no difference, and all you’re doing is dragging out a difficult process unnecessarily.

They did put me on gabapentin at the same time although I don’t think it made much difference. As after I was done with the ropinirole, I had to go off gabapentin to let the ropinirol related augmentation symptoms fade away. I was amazed by how minimal my RLS symptoms were after that taper in the week and a half of taking no drugs at all.

Hang in there, there is a large benefit to the taper as It makes treating your RLS easier with whatever your next protocol will be. I’m now using 10 to 15 mg of oxycodone in the late evening / night and it’s working really well. I view it as a steppingstone to something less drug related, and I’m experimenting with reducing/eliminating inflammation causing foods And other modalities.

But of all the things I’m doing meditation and working on old unaddressed trauma is having I think the most effect.

Kjh100 profile image
Kjh100 in reply to4inthemorning

Hi 4 thanks for youf advice and help, I can see where your coming from ehy prolong the agony. Will drop the dose a bit quicker and see what happens Will keep you all updated, thanks again.

Kjh

Birdland profile image
Birdland

My advice is to listen to your body. Reducing slowly can make the process less of a nightmare. I was on ropinirole for 16 years and had gotten up to 8mg per night. I was advised by a very respected RLS expert to go cold turkey. This was impossible for me. So, people can advise but you have to do what makes the process possible for you. As was said, the closer you get to 0 the worse your RLS symptoms can get. The 4 weeks after I took my last dose was the most hellish time in my process. One day at a time! Good luck!

kcraig profile image
kcraig

For me Ropinerole was maybe 50% effective and made me horribly nauseous and Gabapentin was useless. For me, low dose Methadone is 99% effective with zero side effects.

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