I’m 72 & in general good health (I think) except for Osteopenia and that I inherited Restless Legs from my mum.
I started on .25mg Ropinirole 7 years ago which was like magic but it’s slowly increased to 3x.25mg per night. Perhaps not a big dose but I learned via this site it’s best to switch from Ropinirole. The (new) GP was understanding & seemed clued up so she suggested Pregabalin. Starting dose 25mg and to find what number of tablets suited me.
I learned from this site to reduce the Ropinirole first so I’m now down to 1x.25mg at night & it’s going ok as long as I can add paracetamol as needed, maybe >3 per night.
I also learned here to check my iron levels - ferritin today confirmed as 60 (they said it was ok) but no figures available for TSAT.
I am holding off starting Pregabalin as yet. Do I need to have completely stopped the Ropinirole? Do I get my ferritin level up first? What’s the best type of iron tablet to avoid constipation?
I’m so confused as to my best approach but I’ve little hope of a GP appt for weeks.
Help anyone greatly appreciated.
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BoojaBooja
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Ferritin needs to be got up to over 100 and preferably 200. But achieving that won't guarantee success. Use Gentle iron or fer bisglycinate every second night with orange juice.
It takes Pregabalin a few weeks to take effect ,so you can start off now, and hopefully get used to possible side effects sooner than later.
All this can be done at the same time.
You have made a great start.
I'm wondering if the paracetamol is helping with the withdrawals or the RLS??
If it is the RLS, then you may not actually have RLS but some sort of neuropathy.
Anyway, keep on as you propose and see how it goes.
I agree with Madlegs. Increase the pregabalin now to 150mg by adding 25mg every few nights.Once you find out the percentage iron saturation, and if it's below 45%, start ferrous bisglycinate every other night to raise serum ferritin above 100ųg, preferably 200ųg/L.
When you reach 150mg pregabalin, you can drop the last 0.25mg pill.
Welcome to the forum. You will find lots of help, support and understanding here.
Just to add a few things from what Madlegs said: improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their RLS. If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness.of the blood thinners and of the iron so check with your doctor. Otherwise, take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months. Ask for a full iron panel. Stop taking any iron supplements including in a multivitamin including multivitamins that have iron in them 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.
I hope you continue to have no problem reducing that last dose of ropinirole, but it is usually the last dose that is hardest.
Yes as Madlegs said, start the pregabalin now as it takes 3 weeks to be fully effective although it won't be fully effective until you are off ropinirole for several weeks and any symptoms from the withdrawal have settled. After that increase it by 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. 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. I According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg pregabalin."
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...
Meanwhile 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, 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.
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