I live I. The UK and have suffered RLS for at least 40 years. I was recently sent sor by a GP at my surgery who I have never met before. She wanted to discuss my medication. I was previously on Pramipexole (not sure of dose) , but approximately 3 years ago my prescription was changed to 50gms of Pregabalin to be taken each night. I take 2 Co-Codamol 30/50 most nights too. I’m also on Statins, Aspirin, and Bisprolol Fumarate for my heart. The GP said that I need to come off the Pregabalin as it is addictive. Used by drug addicts and could potentially be lethal for me when taken along side the Co-Codamol. I would need to reduce the intake slowly to avoid going cold turkey. She mentioned taking Quinine but didn’t recommend dosage or if she would issue a prescription and I was too stunned by what she said to think about asking. I’m left totally in the air about what I should do. She then sent me for blood tests, the results of which appeared in my NHS app today. The results of 7 out of the 8 tests done show an abnormality and state that I need to see a doctor. No approach has Ben made by the surgery. This has all unnerved me and I’m not sure what I’m supposed to do. I’m now, as instructed, only taking the Pregabalin on alternate nights and already beginning to feel the effects. What do you advise?
Confused about my medication - Restless Legs Syn...
Confused about my medication
Try and get off the Bisoprolol it makes the restless legs worse. I recently went in Af and was given Bisoprolol I literally had restless legs for 24/7. Getting cardio version and hoping I get a more suitable beta blockers
What were the blood tests?
The GP you saw is not very knowledgeable. Pregabalin is not addictive and can be taken with codeine. Pregabalin should not be taken every other night as that will lead to withdrawal on the nights you don't take it. Drug addicts use it at far higher doses than we do. And 50 mg is below the starting dose for RLS. NICE revised its guidelines to recommend pregabalin and gabapentin for RLS so refer him/her to that or print it out to show him/her.
Quinine doesn't help RLS and can be dangerous to take.
Bisprolol Fumarate is a beta blocker that can make 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....
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.
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.
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. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.
Find a new GP. This one is really outdated and lacking in basic knowledge.Or you could educate her
Show her the new NICE cks guidance.
Pregabalin is now First line meds treatment in UK.
And also show her the RLS-UK website.
Quinine hasn't been used for RLS for decades. It's an old wives tale that it works for RLS. Where did she study??? Quinine is used for cramps BUT more recently has been linked to heart failure! So DO NOT take Quinine.
Pregabalin is not addictive for RLS patients. And the link to respiratory depression when used alongside opioids is really only relevant at higher doses and when there's a history or breathing issues.
So- your GP needs to go back to med school. She will not have been taught anything about RLS at medical school or during GP training.
The RCGPs announced last week that RLS would be added to the GP training curriculum from Aug 25. Hopefully your GP will learn the basics.
The Pregabalin dose you are taking is far too low to cover your RLS symptoms. That is why you have been adding co codamol
So- change GP or demand referral to a knowledgeable specialist. There are very few so tell us where you live.
Your GP should be raising your brain iron levels via iron pills or infusions.
Then your GP should be INCREASING the Pregabalin dose to around 150 -200mg.
The co codamol contains paracetamol. That is bad for you long term.
A small dose of codeine alone would be better.
Stand your ground. Refuse to stop Pregabalin and show the GP the NICE cks guidance. If she refuses- change surgery or demand an urgent referral to a specialist. And write a complaint to RCGPs and GMC.
I'm so sorry you are having to deal with such poor advice and non existent knowledge about RLS and correct treatment.
I'm in Plymouth and your doctor is, to put it mildly, useless. Quinine is joke and as Sue says Pregabalin is not addictive. I take Targinact which is a slow release opioid. It has saved my sanity and is licensed in the UK for rls. It might not suit you but my doctor is totally supportive.
Good Grief !!!Your gp sounds like an idiot.
Please listen to the advice given above and DO fill out a complaint ! Pregabalin is pretty safe - I take 300 mg of it every night, partly for pain (not very effective), almost total control of my rls . Of course I will have a tolerance for it. When will these doctors learn the difference. ADDICTION IS TAKING MORE AND MORE OF A DRUG TO GET HIGH.
Severe sleep disturbance is FAR more dangerous !!!
Ugh.
* swears *
God help us. She’ll be suggesting a bar of soap in the bed, next. 🙂
My laugh for the day 🤣🤣🤣
Update need my knowledgeable friends advice again 🙄
I think Tramadol has caused my RLS
Nowhere else to go
Now off Ropinirole 
