I have been on the following medication since 2004
Metformin ( Slow Release)
Atorvastatin
Fluoxetine
Lercanidipine
Perindopril
And Ropinirole since 2012
I’m seeing my local GP tomorrow about my restless legs. Am I lead to believe that some of my current medications can make my restless legs worse. I was also taking Gabapentin for my M.E and Fibromyalgia but I weaned myself off them last year.
I will be asking for a blood test to check my iron levels too.
I only take 1.5mg of Ropinirole but this has caused me to excessively shop and spend money on a huge amount of stuff I am never going to use. Also I have noticed that I have to take Ropinirole earlier in the day as my legs play up earlier and earlier.
Thank you in advance for your help.
Kind regards.
Written by
BishyBee
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Welcome Bishybee.All your medications are known causes/triggers for RLS.
When did RLS start? The meds could be the cause as you started them in 2004.
The high blood pressure meds and statins are problematic. You will obviously need to control your High blood pressure.
I know there are a few safer alternatives.
Chris Columbus and SueJohnson might have a few suggestions for safer alternatives. You will need a detailed GP discussion.
The anti depressant is also a known trigger medication. Do you take it for depression or anxiety? Safe anti depressants are trazodone and welbutrin. If you take fluoxetine for anxiety- there are safer meds. Gabapentin and pregabalin - which also help RLS.
As you are experiencing Impulse Control Disorder- please consult a solicitor asap. You have 3 years to bring legal action against your doctor. Did they warn of the very high rates of ICD? If not- speak to a lawyer now.
Angharad Vaughan at Leigh Day or Kimberley Bradfield at Switalskis have acted for hundreds of RLS patients.
You are also suffering drug-induced worsening (AUGMENTATION) and need to get off Ropinirole.
Go slowly. The withdrawal schedule is on the RLS-UK website under Useful Resources. So is the Iron therapy and Impulse Control Disorder information. Print them off.
Show your GP.
Get a supply of normal release 0.25mg Ropinirole pills and start reducing now by 0.25mg every 2 weeks.
Start pregabalin or gabapentin around 4 weeks before the last dose of Ropinirole. They start to work around a month after you've stopped Ropinirole.
You also need to raise serum ferritin above 200ųg ideally via iron pills every other day or an iron infusion.
You need to come off ropinirole because of your IC. First off check if you are on the slow release ropinirole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut if needed.
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.
On the gabapentin or pregabalin, 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 and your withdrawal symptoms have settled. 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 or antacids 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? This is the first thing a doctor should do for RLS. 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...
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 without progesterone and sometimes even with it, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.
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.
Statins make RLS worse. Nexlizet (Nustendi (UK) is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) - reduces cholesterol although It doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS, however don't take it if you have diabetes and then there is Bezafibrate (Bezalip) if you are not is the US and Triglide which seems safe. Berberine may help if it is mildly elevated. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.
Fluoxetine is an SNRI antidepressant that make RLS worse. Wellbutrin and Trazodone are safe for RLS.
Lercanidipine makes RLS worse. Some medicines that are safe for high blood pressure are propranolol (Inderal, Hemangeol, InnoPran) a beta blocker that may help RLS, Isosorbide Mononitrate (Monoket, Imdur) which is not a beta blocker nor calcium channel blocker. Other possibilities are: Clonidine (Catapres) an Alpha-2-Agonist used to treat high blood pressure which may help RLS and which also treats insomnia, tenex (Guanfacine, Intuniv), prazosin (Minipress) an alpha-adrenergic blocker that is also useful in managing sleep-related problems caused by PTSD and Tadalafil a vasodilator that in one study completely eliminated RLS. Clonidine can actually help RLS. Discuss these with your doctor. And then there is reducing salt by 1 teaspoon a day nih.gov/news-events/nih-res...
For me, atorvastatin was the worst drug ever: besides giving me terrible RLS I experienced other bad side effects. Statins in general are bad news for most - but not all - RLS sufferers. As Sue mentions, my consultant and GP followed NHS advice for those who can't tolerate statins and put me on ezetimibe: this didn't trigger RLS. Sue has given other possible alternatives.
As far as blood pressure meds go, I too was put on perindopril: I'm unsure whether it impacted my RLS at the time - as I was also on atorvastatin - but I had to come off because it gave me a cough. I was put on losartan instead - initially 25mg, now 50mg - which doesn't trigger my RLS. Sue has given other possible alternatives.
I am now generally RLS symptom free, but I was never on ropinirole (and only now take losartan and aspirin regularly): Jools and Sue have given advice on coming off ropinirole and on increasing ferritin levels etc.
Hi again, Thank you for your replies, I believe my Rls started after 2004 in the beginning I never realised I moved my legs as it only happened in my sleep and I use to wake my husband up moving around, then it started happening earlier and earlier so now it starts up about 5pm. I am not on slow release Ropinirole and I have to cut them up when my legs play up early. I have also noticed I am getting movement in my arms too. I am also taking co codamol 2 x 30/500mg 4 x daily. Thank you
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