Lyrica

[jojomary]

I have struggled with RLS for 45 years. FINALLY I have found relief. I take Lyrica. Two 75 mg capsules along with 2mg of Ropinirole every night 3 hours before bedtime.

[ChrisColumbus]

Welcome to the forum: it would be helpful if you could complete your profile with country, gender and age as these can be important/helpful when making responses.

It's great that after 45 years you are finding pregabalin (Lyrica) works for you: the effective dose is usually in the range of 150 to 450 mg/day taken 1-2 hours before the usual onset of RLS symptoms.

Ropinirole and the other dopamine agonists - pramipexole and rotigotine - are no longer recommended by experts as a first line treatment for RLS, as they eventually lead to augmentation, where you have to keep taking more to less effect, with RLS starting earlier in the day and spreading to other parts of the body.

How long have you been on each of these medications? Have you been on ropinirole for a long time and just added pregabalin or are they both new medications?

Have you had a blood test for serum ferritin and transferrin saturation? Are you taking any other medications or supplements for anything else, as many can trigger or exacerbate RLS.

If you can give more information you will get good advice from others here who have been through what you have!

[jojomary in reply to ChrisColumbus]

Been on Roprinirole appx 6 yes, and yes have had to in crease dosage to no avail. Finally up to 4mg with no relief. Dr started me on Pregablin two 75 mg 2 weeks ago. Still had symptoms. So took it upon myself to add leftover two mg Roprinirole tabs. Ferritin level was normal. Don’t know about transferrin saturation level.

[jojomary in reply to jojomary]

Also wearing compression socks and ACE bandages helps a lot.

[Joolsg in reply to jojomary]

So your doctor wanted you off Ropinirole and onto lyrica? Did you slowly reduce to zero before you started Lyrica?If you've gone back on 2mg Ropinirole, your RLS will soon start to get worse again..Ropinirole worsens RLS severely.

Lyrica takes 3 weeks at 150mg to start to work and you have to be off Ropinirole.

I strongly recommend you follow SueJohnson advice and get off Ropinirole.

[ChrisColumbus]

Pregabalin isn't fully effective for 3 weeks or so, and also won't be fully effective while you are still on ropinirole. Did you wean off the ropinirole very slowly or did you suddenly stop (before you started taking the 2 mg again)? If you suddenly stopped - which one should never do, and which you shouldn't do now - you could be suffering from dopamine agonist withdrawal... Were you on standard or extended release tablets?

I should add that there is a wide range of 'normal' ferritin levels, but RLS sufferers benefit from higher levels: did your doc give you the actual numbers, and was it measured after fasting overnight and after refraining from iron supplements (if taken) for 48 hours?

[ChewieandAsha in reply to ChrisColumbus]

Hi this is Asha and Chewie I have not posted before, I too am on Lyrica started at 75mg but it did not help I had been on Sifrol for 20 years three times a day so went back yesterday and my doctor reluctently uped the dose to 150mg from tonight. I live in Australia NSW and am 71years old female. I read this forum every day ..I still do not think it will help my legs doing the day they start to jump from 2pm. what do you think?

[SueJohnson]

Chris is correct. You need to wean off the 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 or you may be able to reduce more quickly. 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.

As he also said it takes 3 weeks for the lyrica to be effective and it won't be truly effective until you are off lyrica and your withdrawal symptoms have settled. If after that you still have symptoms, you can increase it by 25 mg ever couple of days until you find the dose that controls your symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg ."

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 up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

Doctors will say your ferritin level is normal but what is normal for others is not normal for those of us with RLS. It needs to be above 100 or more. Improving it to that helps 60% of people with RLS and in some cases completely eliminates their symptoms. So ask for your ferritin and TSAT (transferrin saturation percentage) and let us know what they are.

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, C, 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.