cocodamol

[Allie2016]

Hi I’ve had RLS for many years, as well as some other health issues. I’ve been taking cocodamol for my RLS as I found it was really the only med that worked, I got to the point where I was taking up to 7 from early evening until bedtime. My Gp had tried me on Ropinerole and Gabapentine neither worked. Hence las week my Gp has put me on Pramipexole and to stop taking the cocodamol. I’ve managed to cut the cocodamol down to 3 per day in less than a week but I’m wondering if I’m doing it to quickly and having a few withdrawal symptoms.

[SueJohnson]

Don't take pramipexole. It is a dopamine agonist like ropinirole. Up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin or pregabalin won't work. And one expert believes everyone will eventually suffer augmentation. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment. Https://mayoclinicproceedings.org/a...

You say gabapentin didn't work. How much were you taking and when? You may not have been taking enough or in the wrong way.

Also what was your experience with ropinirole?

As far as the codeine you may very well be going down too quickly. Judge it by your symptoms.

Have you had your ferritin checked? If so, what was it? This is the first thing your doctor should have done. 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 in a multivitamin that has iron in it 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and 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. 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.

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (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, 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.

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.

[Joolsg]

Welcome Allie,Can you complete your bio to tell us where you live and ALL other medications you're taking?

Can you tell us what your symptoms are?

Has your GP arranged full iron panel blood tests? Has he/she reviewed your meds to see if any are causing RLS?

You say you were on Ropinirole. What dose and for how long? Did it ever cover your symptoms? The reason I ask is because sometimes a dopamine agonist is prescribed for a short time ( under a month) to see if it improves RLS symptoms. And if it doesn't, doctors used to say it meant you didn't have RLS, although a recent research paper disputes that.

Before prescribing Pramipexole, did your doctor explain in detail that Ropinirole and Pramipexole cause drug-induced worsening (augmentation) and Impulse Control Disorder ( gambling, impulse buying, overeating, hypersexuality)? If not, that is breach of duty/ negligence. This website is full of posts of people who are suffering augmentation and ICD.

So, go back to your doctor and ask for blood tests and point out that dopamine agonists are no longer first line treatment for RLS amongst experts because of the very high rates of Augmentation and ICD.

First line treatment is now iron therapy via pills or infusions and reviewing and replacing trigger medications( anti depressants, sedating anti histamines, statins, beta blockers, PPI gastric meds).

I attach a link to RLS-UK website where you can read the diagnostic criteria for RLS about augmentation.

If you do have RLS, co codamol is the least effective med and the paracetamol shouldn't be taken every day. The RLS-UK website sets out the treatment available and how and when to take it.

Pregabalin and gabapentin are effective for most if taken at the right dose and time.

Gabapentin should be taken at night only, and in split doses of 600mg. The average dose is around 1200 -1500mg.

rls-uk.org/medical-treatments