taking medication. ‘As required’

[Myteamo]

I am trying to reduce/stop taking Ropinole due to augmentation. I’m down from 4mg to 1mg. But is is becoming more difficult/I’m afraid to reduce any more.

has any one tried just taking medication when have symptoms, or as required.

What is the easiest way to take that final step. What is the best way forward.. ?

Your views very welcome.

[SueJohnson]

Welcome to the forum. You will find lots of help here. To reduce further get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks. You may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. As you are probably aware dopamine agonists like ropinirole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. 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. 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. 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 split the doses with pregabalin) Most of the side effects of gabapentin or pregabalin 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. If you take magnesium 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 don't take it within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily." 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...

Have you had your ferritin checked? 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 and fast after midnight. Have your test in the morning. 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, post back here and we can give you some advice.

[SueJohnson]

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, 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, 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, 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, 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.

[Myteamo in reply to SueJohnson]

thank you Sue. There sounds to be something I can consider in your reply.

I have found walking over 5 miles is a trigger.

I am trying iron supplements as my iron levels have been borderline low. Sadly not discussed with doctor, as feel they don’t understand,last time just upped the dose.

Other medication I’m taking PO.

Cetirizine 10mg

Montelukast 10mg

Fostair inhaler

Nasonex nasal spray

Ropinirole ..???

OTC

Iron Bislycinate 17mg +100mg vit C

Vitamin D 75 ug (diagnosed low)

Cod liver oil 1000mg

Gentle Iron 20mg

When required

8/500 co-codamol

CBD oil 6.4 mg x3 tabs

any advice would be greatly appreciated. I’m struggling at the moment. So temping to up the dose of Ropinole but I know that would be a backward step. Tia Maureen

[SueJohnson in reply to Myteamo]

Those are all fine. The gentle iron is the same thing as the iron bisglycinate. I assume you are taking it every other day or at least 24 hours apart 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.

[Joolsg]

Sadly, you can't take Ropinirole 'as needed'. You have to get off it completely. Ropinirole over excites D1 dopamine receptors and they will not settle down until you're off Ropinirole. Taking it again or 'as needed' just prolongs the torture.This last stage is the worst. But stick with it.

You should start replacement meds before you stop the last 0.25mg of Ropinirole.

What meds have you discussed with your doctor?

Have you had your blood test results?

[Firenze1]

I'm trying to come off the Ropinirole. Been taking Pregablin for a week and reduced the Ropinirole but no change as yet. Was prescribed 50mg Pregablin but have increased it to 100mg. I'm at my wit's end but am trying to be positive and hope things will improve soon. Can I take codeine now? If so, how much and when? The evenings are the times I have come to dread and I feel angry and frustrated and tearful that I can't sit and relax at the end of the day. I doubt it's much fun for my long-suffering partner either but I do appreciate his patience, bless him

[Myteamo in reply to Firenze1]

I feel your pain. I’m at my wits end many times as well., wish my partner was a bit more understanding. Double the difficulty when you have to try to disguise the feelings. . I take Co-codamol and CBD oil . Sometimes make it a bit better , but nothing works completely.

Where are with reducing the Ropinirole. ?

Best wishes

Maureen

[SueJohnson in reply to Firenze1]

Pregabalin takes 3 weeks to be fully effective and even then won't help you much until you are off ropinirole.

[Firenze1 in reply to SueJohnson]

Thanks Sue. So far it's been a nightmare however I know it's going to be worth it eventually. I've only been prescribed 50mg but am taking 100mg.so the low dose isn't going to help much.