I’ve been on pramiprexole for some years for my restless legs which I have had for more than 20years,I’m finding it’s not working as well as it did, I’m also gaining weight and continually up every 2 hours in the night passing urine I’m exhausted,
My neurologist has tried changing my medication to Ropinirole, and Clonazepam I Carnot get on with any of these , they also have the same side effect as the above, also have a terrible dry mouth at night, can anyone suggest an alternative I’m opposed to gabapentin ,
Someone suggested codeine , can anyone help
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Welcome to the forum. You will find a lot of help here. It sounds like you are suffering from 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.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender.
Since that seems to be the case that you are suffering augmentation, you need to come off it. If you are on ropinirole, reduce by .25 mg every 2 weeks or so. If you are on pramipexole, depending on where you live, reduce by .088 mg or ,125 mg. 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.
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...
Pramipexole and ropinirole used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. Gabapentin and pregabalin are now the first line treatments. Why are you opposed to gabapentin? It is important for me to know so I can help you.
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 when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
thank you for your reply, no I have not had my ferritin checked, I am going to ring my doctors first thing to see if I can get in, and I will mention this, the best thing that gives relief is a hot bath.
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 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, 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.
What a shame your neurologist is not up to date on best treatment and research for RLS.Dopamine agonists like Pramipexole and Ropinirole are no longer first line treatment because of the high rates of drug-induced worsening ( augmentation).
It also sounds as though you may have Impulse Control Disorder, again, a side effect of these drugs. It causes impulsive over eating ( which could explain the weight gain), gambling, over spending and hyper sexuality.
Please read RLS-UK website and the Mayo Clinic Algorithm and the articles by Dr Ondo below. They explain why these drugs are no longer prescribed by experts, except where everything else has failed.
The usual meds after Ropinirole/Pramipexole are pregabalin or gabapentin. Why are you opposed to them?
The other effective meds are low dose, long lasting opioids.
Did your neurologist arrange full panel fasting blood tests and warn you of augmentation and ICD on Pramipexole/Ropinirole? He's supposed to. Are you in the UK or USA? Maybe we can direct you to a knowledgeable doctor.
I’m in the Uk, my dad was on gabapentin for years it didn’t help him at all, I also find it very difficult to transition from new medication to another and end up going back to pramapexole.
Most of us have been on Pramipexole or Ropinirole and our RLS became much worse. We help others get off them and onto better meds.Many do very well on just gabapentin or pregabalin. Others on low dose opioids.
It's very hard to accept that the drugs we were prescribed to help us, actually made our RLS much worse. But more and more research is coming out now about these drugs and that's why experts have stopped prescribing them.
Just because they didn't help you dad doesn't mean they won't help you and might completely control your RLS. So let me add to the advice I gave above above about getting off Ropinirole or Pramipexole. Dopamine agonists are no longer the first line treatment for RLS. Gabapentin or pregabalin is. The beginning dose is usually 300 mg gabapentin (75 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 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. 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 split the doses with pregabalin) Most of the side effects of gabapentin or 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 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). 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."
hi, managed to get In and see doctor today, put me on gabapentin , 1 tablet 100mg once a day couple hours before bed for one week, 2nd week 2 tablets 3rd week 3 tablets , they will contact me at the end of third week to see how I’m getting on, if I’m not coping I will contact them, let’s see .
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