I have only recently discovered this Forum - wish I’d found it years ago - and this is my first post.
Mine is the all too common scenario- prescribed Ropinerol about 10 years ago, experienced severe augmentation, GP replaced it with Pramipexol which worked well for a number of years with little or no augmentation. As effectiveness declined over time GP’s answer was always to increase dosage. (Started on 2 x 0.088mg, currently on 5 x 0.088mg).
Until recently, augmentation symptoms have mainly been mild and confined to the evening and I’ve had no problem getting a full night’s sleep. Then, about two weeks ago, things changed overnight. Suddenly, I was waking after 2 - 3 hrs. sleep with severe RLS symptoms for the rest of the night. That has continued together with daily augmentation afternoon and evening and, on one occasion, all day.
I have a moderate heart murmur and, about 7 months ago, was prescribed Apixaban, Bisoprolol and Dipagliflozen.. I know that the first two have been linked to RLS and my question is - could those medications suddenly trigger the change I’m experiencing after as long as 7 months? I’m grasping at straws, really, looking for an explanation. I know there’s a wealth of well-informed experience out there and I would welcome any answers / alternative suggestions re. the cause of this.
I’d also be grateful for any advice concerning additional medication that might alleviate the symptoms I’m experiencing.
Oh - and before someone says the only answer is to come off Pramipexol, that’s something that I’ll be covering in another post.
Thanks, folks. Looking forward to hearing from you.
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Your GP should NEVER have switched you from Ropinirole to Pramipexole.
And increasing the dose just makes it worse.
I'll send you a private message about possible legal action.
If the heart medications were going to worsen your RLS symptoms, that would have happened 7 months ago.
As you now realise, Pramipexole has up regulated your D1 dopamine receptors and is driving the increased symptoms.
We hear it every day.
Sadly, UK doctors know zero. They do not understand iatrogenic drug-induced worsening. If they were taught that prescribing dopamine agonists actually made our disease far more severe, they would stop prescribing them.
The withdrawal schedule is on RLS-UK website under Useful resources. Print it out and show it to your GP.
And you'll have to start the reduction process now.
Hopefully your GP will be willing to admit he was wrong to prescribe Pramipexole and even worse to increase the dose.
He will need to prescribe low dose opioids to help you through the brutal withdrawal process. And ensure you have someone around to help. Falls are very common during withdrawal!
Absolutely! No doctor should be prescribing these dangerous drugs. When they prescribe them to older /frail patients- they should agree to pay full rehab costs at a private clinic so the patient can get through inevitable withdrawal safely.
Actually Apixaban rarely makes RLS worse although it does for some people. Bisoprolol definitely does. You might ask your doctor about ace inhibitors or propranolol (Inderal, Hemangeol, InnoPran) a beta blocker that may help RLS as a substitute.
As far as your increased symptoms have you changed anything like diet or life style like exercise? Otherwise it just may be that your augmentation has suddenly gotten worse.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise.
And since I am giving you the above I will also give you this. 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 like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
I was going to wait for your post before giving you advice on coming off pramipexole but since others have chipped in, here goes.
First off check if you are on the slow release pramipexole (it will have XL or ER after it). If so you will need to switch to the regular ones as they can't be cut.
Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed them but they are not uptodate on the current treatment recommendations.
To come off pramipexole, reduce by half of a .088 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.
On the gabapentin or pregabalin, beginning dose is usually 300 mg gabapentin (75 mg pregabalin). ) Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg (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. 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. (You don't need to divide the doses on pregabalin) 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 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin)."
If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about 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 at Https://mayoclinicproceedings.org/a...
Many medicines and OTC supplements can make RLS worse. If you are taking any other than the ones you gave in your post 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 cannot think of anything that has changed recently to cause this sudden increase in RLS symptoms. It just happened without warning.
Other regular medications are statin and omeprazole (hiatus hernia). I understand that these can trigger RLS but I’ve been taking both since long before RLS started. I have stopped the statin in the past and have stopped again now but have not noticed any reduction in symptoms.
Can’t stop the omepraxole - my stomach wouldn’t like it! Can you suggest an alternative?
I have a surgery appointment this p.m. to discuss Iron levels. Last test, a year ago, showed normal levels but below your recommendations.
I’m also going to ask for something like a low level opioid to alleviate the severe symptoms that I’m experiencing at the moment. Can you suggest which might be best?
Re. coming off pramipexole - I appreciate that this is the only real solution but need to delay starting that because I’m booked for a 6 monthly bladder cancer check in two weeks time and can’t risk suffering withdrawal symptoms at that time.
Thanks again for your good advice. Sorry for the delayed reply but RLS kicked in with a vengeance yesterday afternoon and I wasn’t capable of doing much while it lasted.
You can get it on Amazon or probably at your local pharmacy. Take it 30 minutes after eating and 4 hours before or 2 hours after taking iron. Don't take it within 2 hours of taking gabapentin if you eventually take it nor antihistamines
forgot to mention - magnesium glycinate has been suggested to me for alleviating symptoms. As far as I know, my magnesium levels are ok. I’d appreciate your opinion.
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Changing medication advice please
Chest infection and RLS. Not to be recommended.
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RLS, Augmentation and Finding a Neurologist in the SW of England
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