have been on Pramipexole for several years, Pregabalin added this year, worked well but rls breaking through now so was taken off Pramipexole and put on ropinorole, still with Pregabalin. Stopped Pramipexole dead, built up ropinorole dosage slowly, and continued Pregabalin. First week I had the worst rls ever. Should I have come off Pramipexole gradually?
I am seeing some improvement now, still building up my ropinorole dosage weekly, and I know if I stop that also has to be a weaning off process. Should the Pramipexole stoppage have been slower?
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Coldandtired
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You should have switched directly to ropinirole rather than stopping one and building up the other. The equivalent dose of ropinirole to pramipexole is 4 ropinirole to 1 pramipexole. So assuming you were taking one .088 mg pramipexole, the equivalent dose would be .5 mg ropinirole. So my suggestion is to take the correct dose of ropinirole now and that may stop your symptoms.
My question to you is why you made the switch. My guess when you say the symptoms were breaking through is that you were suffering augmentation. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. In your case you were needing to increase your dose to get relief. So that is why I said switching to the equivalent dose of ropinirole may stop your symptoms. If not they will certainly be lessened and you can consider that your first reduction.
Unfortunately that means you need to come off it. 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. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.
Dopamine agonists like ropinirole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. I don't know how much pregabalin you are taking. The beginning dose is usually 75 mg pregabalin. It won't be fully effective until you are off ropinirole for several weeks. After that increase it by 25 mg pregabalin 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 of pregabalin 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. If you take calcium don't take it within 2 hours as it may interfere with the absorption of pregabalin. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg pregabalin."
Have you had your ferritin checked? If so what was it? 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 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.
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 atHttps://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. Keep a food diary to see if any food make your RLS worse
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.
I was taking 5 Pramipexole daily, one at dinner and 4 at bedtime. I started Pregabalin in January, 50mg twice daily, one at dinner and one at bedtime and the bedtime Pramipexole was reduced to 3. This helped for a while but not every day. Recently my symptoms got progressively worse, augmentation I now understand, so I went back to my Doctor. This was only 8 days ago. I stopped my Pramipexole totally that day and started ropinorole, 500microgram tablets. Half a tablet at 7pm (3 hours before bed) for two days, (lower dose unavailable widely in UK) then 1 tablet for 5 days, then 2 tablets daily for 7 days, I have just done my first day of 2tablets and am meant to increase by 1 tablet in another 7 days and 1 more 7 days later which will mean I am on 2g daily, along with my Pregabalin as above.
I understand now why my first few days were so dreadful, but what should I be doing now? Come off the ropinorole completely, or slowly?
Pregabalin here in UK has now been made a controlled drug that I have to sign for , and I have had a telephone consultation with the idea of taking it off me in May, which I resisted . I had been in hospital as a day case for shoulder surgery and ended up staying overnight but had no meds with me and none supplied, my legs were bouncing of the ceiling that night, so I refused to come off the Pregabalin as I obviously needed it. I know I will be asked again though.
I do take magnesium, not daily, and calcium with vitamin D, but did not know about the 2 hour gap. My old doctor, retired now, mentioned iron tablets but not that it could take 4 months to take effect and I gave up sooner than that because of constipation.
I will try to get an appointment with my doctor quickly now, armed with your information, but should I stop ropinorole now?
I’m 72 by the way if that makes any difference.
Thank you for your help so far, I wish I had known sooner.
If you were taking 3 tablets and they were ,088 mg then the equivalent dose would be 1.5 mg ropinirole. There is no need to gradually go up to that. I would start taking 3 of the 500 microgram tablets (500 micrograms = .5 mg) tonight. That map stop your symptoms stop your symptoms. Give it a day or 2 to see if that is the case. You should be able to find ,25 mg ropinirole pills in the UK. If not buy a pill cutter and cut the .5 mg ones in half. Then follow the schedule I gave above to slowly come off it and when you are off it and your symptoms have settled to slowly increase the pregabalin every 2 days.
Unless you have symptoms after dinner there is no need to take either medicine before 1 to 2 hours before bedtime.
Many people find that taking magnesium at night every day helps their RLS.
Many thanks again. There is a nationwide shortage of the 25mg tablets in the UK, withdrawn for “business reasons” apparently. I will get my iron checked as well. Thank you for such prompt replies, I also read the mayo clinic algorithm report, phew.
I’ve suffered from rls for a good 30 years. I’ve been taking pramipexole for most of that time and I’m now on the maximum dose of 6 tablets per day and still no relief from rls. Recently I had a blood test which showed I was anaemic and given two iron tablets daily. After a couple of days I noticed a huge difference in my jumpy legs and I’m now taking 3 pramipexole and will continue to lower the dose. I googled all this and low iron makes this evil problem worse. I shall be speaking to my doctor after my next blood test. Thought this was worth a mention to fellow sufferers. Best of luck everyone 🤞
I’ve been on pramipexole 10+ years. Initially it would make me fall asleep within minutes of taking it in late evening which was great. I found it controlled the RLS well but over the past year or so I’ve noticed the RLS is noticeable through the day which I’ve never had before. I increased the dose as per Drs advice but the daytime episodes continue the only difference is I’ve began having realistic scary dreams and I feel highly anxious, on edge and at times shaky. I’ve developed a strong palpitation type sensation in my throat up to my ears and at times I feel as though my hands and legs are like jelly. I’ve developed nil patience and I’m increasingly irritable and have a short fuse. I had my annual check up last month at the UCLH in London with my neurologist. She doesn’t think the new symptoms are RLS or anything to do with pramipexole but identified I’ve noticeable nerve conduction sensation in my extremities. I’m being sent for a head MRI to see if anything shows up. My Neuro suggested I come off pramipexole and try Gabapentin or Pregabalin. I was given a starter dose of Pregabalin and told to slowly come off the pramipexole before starting Pregabalin. Within 12 hours of not taking my usual dose of pramipexole my RLS was difficult. I persevered for days and have to say it was difficult and definitely caused me to struggle at night. I began the Pregabalin and it made no difference from the RLS perspective. I began having terrible headaches and disturbed vision. Interestingly the palpitations, jelly extremities and everything I had before I changed continue. Two weeks into Pregabalin I chose to go back onto pramipexole. Immediately the RLS calmed down. I’ve decided I’m going to wait until I’ve had the MRI to decide what to do next medication wise as I’m surprised how difficult coming off pramipexole was and the side effects I had with Pregabalin. Reading different articles on here I see different drugs affect people differently which I get but it’s not until it’s you that you appreciate just how difficult changing meds can be.
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