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Restless Legs Syndrome

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Coming off Mirapex

108512bea profile image
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Hi I have been taking mirapex for 10 + years. I have been instructed by my restless leg doctor I need to wean off the Mirapex. I am having terrible withdrawal symptoms, was wondering how long these symptoms will go on before I start to feel better? Thank you

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108512bea
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SueJohnson profile image
SueJohnson

You need to slowly, slowly wean off it. Reduce by .125 mg (this is what's in .088 tablets) every two 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. But in the long run, you will be glad you came off it. Also have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, 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 your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 and your transferrin saturation to be between 20 and 45. If you report your results here we can advise you on what to do next. Has your doctor agreed to put you on gabapentin which is the first line treatment for RLS now. If not, ask him/her to. The beginning dose is usually 300 mg gabapentin. 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. 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 daily." If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin. 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 atHttps://mayoclinicproceedings.org/a...

108512bea profile image
108512bea in reply to SueJohnson

I want to personally thank you for your well written response. I currently am about 1.5 weeks through without being on Mirapex at all. However I am now told there is no solution of help to stop the dopamine running wild in my body? the withdrawal symptoms could continue on for weeks maybe even months? I ve consulted with two doctors so far first being Mayo and second being my primary. I will continue this response in a bit. I live in Wisconsin and ive reached out to whomever I can? My brother mentioned that I should try a couple of gummies at bedtime to see if that would bring down the symptoms, however I am told i would have to drive to Upper Michigan to purchase because not legal in Wisconsin? At least I don't think so?

SueJohnson profile image
SueJohnson in reply to 108512bea

You're right - it is not legal in Wisconsin and they have harsh laws. However CBD oil is legal with a doctor's recommendation. However I would first try to get a low dose opioid prescribed by your doctor.

108512bea profile image
108512bea in reply to SueJohnson

I have tried oxycodone clonazepam and one more but I can’t remember the name all of which have not assisted in letting me sleep at all.

agapepilgrim profile image
agapepilgrim

I take magnesium supplement - from 3,000-5,000 before bed depending how bad the RLS is. I have gastritis and duodenitis and doc put me on pantonix and made RLS much worse; had to stop that. Trying natural digestive enzymes.

daughter-Advocate profile image
daughter-Advocate in reply to agapepilgrim

Is the 3k-5k magnesium a prescription? Or can it be bought online?

misimpatient profile image
misimpatient

I am not going to be of any help to you. I have been on Mirapex for almost 20 years. I have tried several times to get off of it and found it impossible. I am just now taking the 1mg tablet. I started out with 1/4 tablet and over the years have had to increase it gradually . I wish I had never started on it. But you know what they say about hindsight.

SueJohnson profile image
SueJohnson in reply to misimpatient

Don't give up. It is possible although admittedly it is hard, but a low dose opioid can help. See my long reply above. You can do it!

108512bea profile image
108512bea in reply to SueJohnson

I wont!

108512bea profile image
108512bea in reply to 108512bea

ive come too far to give up now! I just wish I could get better sleep right now that's all

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