I was diagnosed with Restless legs syndrome around 2012 and was prescribed ropinirole. I started on 0.5 mg increasing to 1 mg, and this worked for a while. A couple of years ago, my symptoms were getting worse and I was experiencing augmentation. I get the sensation in my wrists now, and my symptoms start around the time I take the ropinirole. I contacted my doctor and he increased my dose to 1.5 mg and said if that doesn't work, take 2 mg. I struggled on with 1.5 mg until this summer when I couldn't take any more sleepness nights.
I joined RLS UK and did some research into other treatments. I went to see my Doctor this week, and explained to him my problems. He didn't have much knowledge about RLS and said I knew more than he did! He prescribed gabapentin to take alongside the ropinirole, and suggested I take the gabapentin (currently 300 mg) around 7 pm to help with the worsening evening symptoms, and then carry on taking the ropinirole. I have been doing this for a few days now, and after the first night which was good, I have found no difference at all, as the ropinirole is causing the worsening symptoms and as I am still taking the ropinirole this will carry on.
I know I cannot just stop taking the ropinirole, but I wondered if by not gradually reducing and stopping the ropinirole and gradually building up the gabapentin, the comination of my medications may not improve my symptoms.
What are other people's experiences of both medications? And, if anyone has changed from ropinirole to gabapentin, how did they do it successfully?
Any help would be appreciated as I am really struggling now, and my Doctor although wanting to help, doesn't have the knowledge or experience to know what to do about it.
Many thanks.
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Kissfan
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You are obviously augmenting on the ropinirole. 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. But in the long run, you will be glad you came off it. Also have you had your 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 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 your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 and your transferrin saturation to be between 20 and 45. If your transferrin saturation is OK, then if your ferritin is less than 75 take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps with its absorption. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it can interfere with its absorption. Take it every other day preferably at night at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you probably need an iron infusion since iron isn't absorbed as well above 75. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets. Dopamine agonists like ropinirole are no longer the first line treatment for RLS. Gabapentin is. The beginning dose is usually 300 mg gabapentin which you are already on. Normally you would start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off ropinirole for several weeks. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 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. Most of the side effects of gabapentin 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 daily." If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin. 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...
Thank you so much for your reply, which contained a lot of useful information, and a lot of things I wasn't aware of. I will definitely look at the Mayo clinic information and take it in to my Doctor to formulate a plan to come off the ropinirole. Thanks so much.
I feel for you, I truly do. I have been on ropinirole for 25 years and am currently taking 12 mg a day, (4mg/3x daily.) I will be on it willingly for the rest of my life. Like you, I started out at .5 mg. and gradually over the decades have had to increase the amount to keep up with the augmentation. The thought of weaning off of it is not even a consideration. My RLS is so intolerable that I am happy to keep upping the dosage of ropinirole until a cure is found. Gabapentin never worked for me, so I am keeping my fingers crossed for you that you find something that keeps this horrible disease at bay.
Thank you so much for your comment, and it helps so much knowing that I am not alone. You have suffered so long, and yes, a cure would be such a blessing.
That is 3 times the maximum amount of ropinirole. I am amazed your doctor would prescribe that for you. And you are going to have to keep increasing it and keep increasing it and keep increasing it. The maximum given for Parkinson's is 18 mg. I assume no doctor will give you more than that. What are you going to do when you reach that which you probably will before the end of your life.? And there is no cure on the horizon nor do I think it is likely in the next 20 years. There are other medicines for RLS besides dopamine agonists and gabapentin/lyrica. Like low dose opioids and dipyridamole but for them to be truly effective, you would have to come off the ropinirole. Have you had your ferritin checked?
I am on 4 mg of Ropinirole and I know when I have not taken it as my arms and legs give me hell. I am also on 300 mg of quinine sulphate. Between these two meds. they seem to keep my symptoms in check and I see no obvious reason to reduce them. Obviously no two people are the same, but I hope that you are able to find the right combination of meds. to allow you some restful sleep.
After 40 years of Gabapentin, I shifted to .75 Ropinirole (7:30 PM) and oxycodone 10 mg(@ 10 PM). Works well except I wake up @ every 2 hours. Trying to work on the latter because I'm not getting adequate restorative sleep.
Hi there, I've had rls for about 30 years and tried many forms of medication. Currently I am taking a combination of Ropinirole and Gabapentin. I take 2mg of Ropinirole at 4 in the afternoon and 2mg at around 8 in the evening with 300mg of Gabapentin. This seems to work for me and i get a decent sleep although i do tend to wake early . Ive tried loads of various meds but this combination seems to work. Also trying Tumeric and Muccuna L Dopa capsules heard these might help but only just started taking them .
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