Hi looking for some advice please, I have been on a low dose of ropinerol for approx 9 years I often try to come off but the side effects are horrendous. Bedtime becomes none existent because I’m unable to lie down, my legs become very twitchy, crawling like sensations, my feet become very hot with a feeling of crawling inside them. I also have strange feelings throughout my upper body and I become so anxious, I tried for 4 nights in a row not to take ropinero but I was so tired and exhausted the thought of another night with no sleep was more than enough, I had no choice but to start to take it again, I hate taking it but each time I try to stop in bouts of 4 days or so I always encounter the same issues. If you could think of a way to help me come off that would be great, it’s the thought of coming off knowing what I will go through that is soul destroying.
Thank you
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Webbkaz
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Don't try to come off it cold turkey. 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. But in the long run, you will be glad you came off it .If that is still too much to reduce, you can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks.
The main reason to come off it is 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. It is no longer the first line treatment for RLS for this reason as up to 70% of people on it will experience augmentation and then they have to come off it which can be hell.
Withdrawal is dreadful. You say you're on a low dose? Below 1mg?There are 2 options. Reduce quickly over 3 weeks by reducing your dose every few days. You have seen how hellish that can be!
Alternatively, reduce slowly over a long period, by 0.25mg every 2 weeks.
To make Withdrawal easier, ask your GP for a supply of low dose opioids. Tramadol 50mg, Codeine 30mg or Oxycontin/oxycodone 10mg. Take the opioids at each dose reduction to settle the withdrawals. If you choose the faster route, take opioids each night, every 4 hours. Or cannabis. It is very helpful.
If you have a GP who doesn't realise how hellish Withdrawal from dopamine agonists can be, and refuses opioids, you could apply for medical cannabis ( it's been legal for 4 years) and smoke/vape whenever required during withdrawal. It takes about 3 weeks to get your prescription, but it's not on the NHS and works out about £3 a day.
You should also get full panel fasting blood tests and raise your serum ferritin above 100, preferably 200 as that can reduce the severity of withdrawal for some and it can improve RLS long term for many. If your serum ferritin is below 200, you can buy some ferrous bisglycinate and take every OTHER night on an empty stomach before bed.
Your GP should prescribe pregabalin for you to start about 4 weeks before you drop the last dose of Ropinirole. Pregabalin takes 3 weeks to take effect usually, but during withdrawal, it doesn't help much. However, it will be in your system, ready to work. It starts to help about 2 or 3 weeks after withdrawal. The starting dose is 75mg and increase by 25mg pills each night up to 150mg.
What you experienced during withdrawal is normal. Most people get no sleep for 4 or 5 day's and very severe, unbearable, all over RLS.
Low dose opioids and cannabis can help reduce this, but won't stop it completely.
By day 5, things start to improve. Do not give up. With each day off Ropinirole, your over stimulated/ damaged D1 receptors will start to settle and calm down. After 2 weeks, most people find the severe RLS has settled and the new medication has started to work.
Are you taking any other medications, like anti histamines, anti depressants, statins, beta blockers or gastric medications? These type of medications make RLS worse.
This is a useful article that you could show your GP when asking for low dose opioids/iron tests. Sadly, RLS isn't taught at any stage in medical training, and doctors do not realise the suffering these drugs cause. It's why they are no longer prescribed by experts ( there aren't many experts in the UK!).
When you've been off Ropinirole for 3 weeks, if 150mg pregabalin doesn't cover the RLS, you can increase up to the average of 200mg. If that doesn't help, the maximum dose is 450mg.
Some people find pregabalin and gabapentin do not cover their RLS. If that happens, you will need a low dose opioid. The long lasting opioids like Buprenorphine and methadone work best for RLS and at low dose do not cause addiction ( unless there's a history of abuse) or tolerance. The same dose is taken for decades.
A long appointment with the GP may be required. Show him /her the RLS UK website on augmentation and the medications chart. Also show them the Mayo Clinic treatment algorithm, which is written by the world's top experts. Both NHS and NICE guidance are now outdated.
Is there a reason you want to come off it other than you hate taking it? I remember you couldn't tolerate gabapentin but you also tried pregabalin. Was pregabalin OK? If you couldn't tolerate either of those your other opioid is low dose opioids. Will your doctor prescribe them? Are you willing to take them?
I see on your profile you list a couple medicines that make RLS worse.
Amitriptyline is a tricyclic antidepressant and makes RLS worse for most. A safe substitute is trazodone.
Omeprazole is a proton pump inhibitor and RLS-UK says most proton pump Inhibitors worsen RLS. Gaviscon Extra Strength Tablets and Liquids is a safe alternative. Do not stop taking omeprazole but you can switch directly to Gaviscon. Don't take Gaviscon within within 2 hours of taking iron.
Discuss these with your doctor.
I see you had a hysterectomy. If you are taking HRT, it contains estrogen which makes RLS worse for most.
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, 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.
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