I'm new to this group - very thankful to have found it and the fantastic information that's here. Hurrah for you!
Last October I started taking Ropinirole for RLS but have decided I don't want to stay on it any further - I've augmented on that and I have edema in my arms and legs.
The doctor is switching me to pregabalin - and so this week i'm moving across. I'm on .5mg Ropinorole and .5mg of Pregabalin and after 7 days i'll go to .75 Pregabalin and no Ropinirole. But I don't want to be on Pregabalin either - afraid it will do the same thing and want to increase my ferritin instead to see if that helps. It's low at the moment.
Why don't GP's increase iron in the first instance before launching into drugs - I don't understand.
How should I come off the Pregabalin?
Many thanks in advance!
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Written by
missrees
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Welcome to the forum. You will find lots of help, support and understanding here.
Since you just started pregabalin you will have no trouble coming off it. I would reduce by 25 mg every few days.
Is .5 mg ropinirole what you have been on or have you been on a higher dose and reduced to .5 mg? In either case dropping the full .5 mg will cause a lot of unnecessary suffering. Ask for ,25 mg tablets and reduce by .25 mg every couple of weeks. You will have increased symptoms. You may need to reduce more slowly. Wait until the increased symptoms from the reduction has settled before going to the next one. Do not cut the tablets. 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.
Since you don't want to stay on pregabalin why are you even starting it? It takes 3 weeks to be fully effective and won't be fully effective anyway until you are off adartrel for several weeks.
What are you planning on taking to control your RLS? I take gabapentin which is basically the same drug as pregabalin and I have edema, but it is very mild and affects only my lower legs. It's not a problem at all and the gabapentin completely controls my RLS. And not everyone gets edema at all.
GPs don't increase iron in the first place because they have not been trained on RLS.
What is your ferritin? Since you mention iron I assume you have had a full iron panel. Did you stop taking any iron supplements 48 hours before the test, not eat a heavy meat meal the night before and fast after midnight, and had your test in the morning before 9 am if possible? If not your ferritin would have been higher than the actual number you need.
I am going to assume you are taking iron so will give you the usual advice I give. Take your iron with 100 mg of vitamin C or some orange juice since that helps its absorption. 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. Since 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.
How much elemental iron is in the tablets you take? This is the important number?
I also have some bad news for you. HRT contains estrogen and estrogen makes RLS worse for those of us with RLS.
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, eating late at night, 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, 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.
By the way it would help us give you advice if you would indicate on your profile the country you live in.
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...
I was on 1mg Ropinirole - so they've reduced that by half .5mg (since Saturday) and introducing pregabalin at .25mg - for 7 days - so finish this Friday and then supposed to go to .75mg pregabalin.
I have slept okay - woken a few times but not too bad at all - so the pregabalin must be having an effect otherwise i'd be up the whole night?
I can ask the GP to prescribe ropinirole at .25mg from Friday perhaps for 2 weeks? and not take the pregablin.
My ferritin has been under 50 with a range to 300 for a long time - so I would like to see if my symptoms improve if those levels are raised and before going on Pregabalin. But yes, I'll be very happy to come off Ropinirole. Last time I tested for Serum Iron was a few years ago and mid-range. I will arrange another test and take your advice on the protocol.
I'm taking an iron supplement called Active Iron at the moment - it has Iron at 17mg, but will look into iron bisglycinate today.
And yes - have read about the HRT and estrogen making things worse. not quite sure which is the worst here. I'll ponder longer
I would continue the pregabalin since it seems to be helping at least until you are off ropinirole for a few weeks and your symptoms if you have any have settled. Maybe you will be lucky since you did so well cutting down from 1 mg to .5 mg. Then reduce reduce by 25 mg every few days.
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