Good morning, after advice from all the good people here, I got the courage to speak to my GP to come of Roprinirole.
I am now off Roprinirole all together after gradually reducing by 0.25mg each time.
The first few weeks were not to bad but the last month has not been good.
I am now slowly worked myself up to 150mg of Pregabalin a day which I take in the late evening,
My question is my RLS is has not gone away it's not as intense but still enough to keep me awake. My sleep pattern at the moment is 3-5 hours a night I am shattered.
I have only just started on the last 25mg 2 days ago I know it takes a few weeks for Pregabalin to work so should I wait 3-4 weeks for that last 25mg to work or can I ask the GP for a increase as I am not sure what the maximum Pregabalin I am allowed.
Many Thanks
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deluxebar
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If you have been off ropinirole for several weeks and your symptoms have settled you can increase by 25 mg every 2 days until you find the dose that works. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg pregabalin."
The usual maximum is 450 mg but you can actually go as high as 600 mg.
I am on the same journey at the moment. I am not completely off Ropinrole and I am currently taking 300mg/ day of pregablin as 4 x 75mg equally spaced doses. My neurologist says he is happy for me to go up to 600mg per day if required.
The pregabalin is not going to do you much good until you are off the ropinirole and the withdrawal effects have settled. And you are already on a large amount of it. Do not increase it. In fact once you are off ropinirole and things have settled down you may actually be able to reduce it. If that is the case reduce it only by 25 mg every 2 weeks to avoid withdrawal symptoms. Also take it all at night 1 to 2 hours before bedtime. You won't need it during the daytime. Doctors will sometimes prescribe it that way since its primary use is for neuropathy so that is the advice for it. It is used off label for RLS.
Let me give you my usual advice for coming off ropinirole.
Since you are on the slow release ropinirole you need to switch to the regular ropinirole because the slow releases ones can't be cut if needed.
To come off ropinirole reduce by .25 mg every 2 weeks or so. Ask for a prescription of these if needed. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. 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. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
The beginning dose is usually 75 mg pregabalin [If you are over 65 and susceptible to falls the beginning dose is 50 mg pregabalin. Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. After that increase it by 25 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. Most of the side effects 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 200 to 300 mg pregabalin."
So you can see from the above your doctor prescribed pregabalin too soon and in too large an amount.
Have you had your ferritin checked? If so what was it? This is the first thing that should be done for RLS. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 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. 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. If you can't get an infusion, let us know and we can advise you further.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory 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 (epsom salts), 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, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
My serum ferritin over the years has been 165 - 170 ug/L. I have never seen a TSAT number in my results so I'll try and get one. Both my parents had mild RLS and I think I have gotten it genetically on the double :(. Having been on 4mg/day of slow release Ropinrole for many years I dropped to 3mg/day at the start of August and at the start of this month to 2mg/day. I am certainly feeling increased symptoms but I am encouraged by so many people saying it is worth getting off Ropinrole and I hope to be joining your ranks shortly.
I wouldn't worry about your TSAT. In almost all people it is OK. Just the next time your ferritin is tested ask for a full iron panel .
That's great that you have reduced it to 2 mg! Just be aware that as you get closer to 0 that the symptoms will get worse and you may have to reduce less each time.
Hi Sue, thanks for such a comprehensive response! There are quite a few nuggets of information in there for me. I am going to act on them as I would love to be off the Ropinrole.
On the 12th June I started to reduce it by 0.25mg every 14 days.
When I got down to 0.5mg of Rorinirole I started 75mg of Pregabalin.
14 Days later reduced Rorinirole to 0.25 and increased Pregabalin.
To 100mg.
Now I am completely of Rorinirole and taking 150mg of Pregabalin.
I have had some good nights but at the moment things are not good, I’m getting roughly 3-5 hours of sleep a night. I start of in bed normally falling asleep reading but within An hour or two awake, so I normally go downstairs and colour. (Adult colouring) Then when the legs feel better fall asleep on the sofa normally listening to a podcast. I have got low dose opioids but they don’t seem to help and give me a vile headache in the morning.
I started 150mg 3 days ago so should I wait to see if things settle or ask if I can increase another 25mg. The past 10-12 days have been the worse since I started this withdrawal journey.
Hi, sorry to hear that you are having it so rough. I am not an expert just a fellow sufferer. It strikes me that you do have plenty of headroom with your pregablin dose. I think if I was in your shoes I would certainly ask my GP about an increased dose. Rightly or wrongly I am on 300 mg/day and have found the pregablin to be effective. Please keep posting, I am interested to hear how you get on as I am also coming off Ropinrole at the moment.
Thank you. I will go back to GP I had 3 hours sleep last night. The RLS had improved especially evening times, I actually managed to sit through a whole film without any issues first time for many years. Its just an hour or so after I fall asleep, there not as bad as they have ben in the past but just bad enough to keep me awake.
Hi I'm now on 175mg Dr has suggested I stay on this for at least month to see if there is any improvement. I am definitely getting more hours sleep and the RLS is not so intense. I actually managed to watch a whole film the other day with no RLS I can't remember the last time I did that.
When my RLS starts if I walk around the RLS stops but I have arthritis in both knees so my walking is VERY limited, but I can ride an exercise bike. So I have a new routine which seems to be working (fingers cross). I take my tablets at 11pm. Turn my light of at 11.30 lay on my side with my kindle propped up in front of me and fall asleep reading. I wake normally every few hours, when I wake I do have RLS so I get on my exercise bike(gentle riding)for about 10 minutes reading. Then back to reading back in bed till I fall asleep.
Last night was the first time that I have not had RLS, I can't remember when the last time that happened but the night before I was on the exercise bike 4 times. But after the exercise I am falling asleep a lot quicker. I was getting roughly 2-4 hours night sleep at the end of coming of ropinirole now I am getting 6-8 hours sleep, I do lay in till 8 though. Hopefully you are doing better :)))
Sounds like you are making progress- that’s great. I can relate to a lot of your routine including the exercise bike. I listen to an audio book at night on a 15 min timer and I am usually fast asleep before the timer finishes. Only problem is that I am usually awake again about 1 hour later. Your progress is very encouraging to hear and I hope that it continues for you.
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