Hi all. I am a 74 year old man and I have had RLS for about 30 years. Resently it has become quite severe. I take .5mg of ropinirole at 7am, 12 noon, 5pm along with 480mg magnesium and at 8pm I take 1mg ropinirole along with 200 mg of gabapentin. I am having issues controling RLS and am unable to get more than a few hours of sleep and when they don't bother me it seems I have ensomnia. I had my Ferritin checked (non fasting) and it was 128. I am wondering if I should try to raise it with a iron infusion to help me out. I am about at the end of my rope. Any advise would be greatly appresiated.Thanks
Hotrodder
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Hotrodder
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Unfortunately it sounds like your are suffering from augmentation and will have to come off ropinirole. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.
Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin is. They used to be the first-line treatment which is why so many doctors prescribed them but they are not uptodate on the current treatment recommendations.
To come off 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. 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.
On the gabapentin the beginning dose is usually 300 mg gabapentin. Normally you would 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 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. 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. Most of the side effects of gabapentin 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin ." If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin 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.
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...
On your ferritin, you can try to raise it but it is unlikely you will be able to get an iron infusion with it being over 100. If you can great. If not 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 or after 8 weeks if you get an iron infusion.
I assume you stopped taking any iron supplements 48 hours before the test, didn't eat a heavy meat meal the night before, fasted after midnight and had your test in the morning before 9 am if possible. If not your ferritin would be higher than it would have been otherwise.
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, , dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, 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.
I recently had bloods tested and I was scared to read my ferritin level was zero? Iv got on top of the RLS thankfully, but should I be worried about this ferritin thing? As in UK the docs did t seem bothered xx
Nothing will help while you're on Ropinirole. That's what's causing your worsening RLS. Follow SueJohnson advice. Do NOT take another dopamine agonist, it will quickly worsen your RLS again.
Read all the posts headed Ropinirole or Pramipexole and you'll see we get at least two people a day with the same common complication.
Report it as a side effect via the FDA so doctors realise the scale of this serious side effect and stop prescribing these drugs.
I was on a similar class of drugs (pramipexole) for about 20 years (2mg/day). I reduced the dose by 0.125mg each day per 2 weeks for 32 weeks. Bad medicine! Ropinirole was prescribed by a neurologist. Another medical person suggested a Neupro patch. These are the same class of drugs (dopamine agonists). I did not take them. I have also used gabapentin for 20 years. I take 600mg at 5pm and 900mg at 9pm. I also take 2 Magnesium pills at 8am. Do not take more than 900mg at a time for maximum absorption. The maximum dose of gabapentin, I think, is 3600mg/day. You are taking a very low dose. Gabapentin and dopamine agonists can promote compulsive and excessive behaviors (eating, gambling, shopping, etc). I gained 20 pounds the first 2 years and 50 over 20 years. The weight has added to my sleep apnea.
I am 77 years old. I have peripheral neuropathy in my feet and ankles and Restless leg affecting my general body and my shoulders and arms. I also have sleep apnea and wear a CPAP mask at night. Sometimes I have insomnia, PN, RLS, and some finger arthritis. I aggravate some or all of these conditions when I am extra tired from too much activity. Standing for 4 hours on a party fishing boat is a killer. I cut back on alcohol to 1 oz per day. I joined a local gym and have a weight program 3 days per week. The three days in between, I try to walk 1.75miles in 30-34 minutes.
Diet and exercise are better than pills! Keep looking at this website. Others know more than I do. Keep trying things while keeping your doctor informed. Everybody is different.
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