Hi, I'm new to the group, and I am so grateful I have found you. I have had restless legs since being a child and it's only in the past few years it's been diagnosed. I have it in my legs /feet and arms. They put me on pramipexole 88mg one at night. At first I thought it worked but for considerable months now I have it back and it's off the scale. After finding this charity and reading through I noticed medication plays a huge part. Here is a list of my medications, I would be grateful if anyone could advise on this. Kindest regardsPramipexole 88mg( 1Night )
Fluoxetine 20mg (1 daily)
Mirabegron 50mg (daily)
Lactulose (daily)
Estradiol 2mg (1 daily)
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Pinkduck06
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Welcome to the forum. You will find lots of help, support and understanding here.
You are suffering from augmentation. he 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.
This means you need to come off it.
To come off pramipexole, reduce by half of a .088[.125] tablet 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, pramipexole and requip are no longer the first line treatment for RLS. Gabapentin or pregabalin is.
On the gabapentin or pregabalin, beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off ropinirole (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...
Meanwhile 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, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, 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, 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.
Some 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
Give me a minute and I will reply on your medicines and give you some safe substitutes.
Thanks Sue, I was about to say that I too suffered from augmentation and had to come off the pramipexole but you’ve covered that and much more far better than I could. I’ve now weaned myself off antidepressants and get by on just 100mg of gabapentin at night (200 if it’s particularly bad).
Thank you Sue, I take estradiol for menopause which is also as brutal as RLS. but I'm thinking if they can substitute the other meds I may hopefully get away with having that one
Welcome Pinduck.Did your GP warn you that Pramipexole caused 'augmentation' and Impulse Control Disorder before he prescribed it?
Pramipexole and Ropinirole and Neupro are dopamine agonists. The UK is about 10 years behind best treatment and practice as set out in the USA Mayo Clinic Algorithm and the new guidance from the AASM.
UK doctors aren't taught anything about RLS or the dangerous drugs they routinely prescribe.
RLS-UK website has lots of up to date information and a warning about Pramipexole and other dopamine agonists.
These drugs are fantastic when you start them. Then they creep up on you and actually worsen the severity of the disease.
The only solution is withdrawal.
RLS-UK sets out the safe withdrawal under 'Useful resources'.
What is your serum ferritin?
Before prescribing meds your GP should FIRST have reviewed and safely replaced all medications that trigger RLS.
Fluoxetine is one of them. NICE cks guidance makes this clear, so your GP should have read NHS and NICE guidance.
All SRNI and SSRI and tricyclical anti depressants trigger RLS in genetically susceptible people. Safe anti depressants are trazodone or wellbutrin. Were you prescribed fluoxetine for depression or anxiety?
Mirabegron is an older anti cholinergic drug. My MS neurologist no longer prescribes it because of the link to dementia. Solifenacin might be better. Ask for a referred to a specialist urologist to discuss the newer anti cholinergic meds.
They may worsen RLS due to their dehydration effects. RLS is often better if you stay well hydrated.
Estradiol is fine as it is localised oestrogen.
The next thing your GP should do is full iron panel blood tests and treat any deficiency. RLS patients need much higher serum ferritin levels. There is an Iron therapy page on RLS-UK website under Useful Resources.
Raising serum ferritin above 200ųg/L can resolve many RLS symptoms and should have been done before Pramipexole was prescribed.
You have a lot of reading and research to do. Start by reading the last month of posts on here. Your GP will not have been taught anything about RLS at med school or during GP training as it isn't on the UK curriculum and the RCGP refused to teach it, despite RLS-UK campaign. The more you learn, the better treatment you will receive.
Read RLS-UK website- particularly about augmentation and medications to avoid and iron therapy.
And start the reduction of Pramipexole now.
Withdrawal is hellish. Most people joining this site do so because their RLS has become very severe on dopamine agonists. But once off Pramipexole, the RLS settles to what it was like before you started. And replacing the trigger meds and getting iron therapy may well settle your RLS. I know several people who got off dopamine agonists, had an iron infusion and their RLS settled. They are medication free.
Hi Joolsg, unfortunately no the doc didn't really give any advice or anything just prescribed and off I went. Thank you for replying by the way I really do appreciate it, fed up with suffering now it's brutal at the mo
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Please Help :(
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