B12 and almost off Requip. - Restless Legs Syn...

Restless Legs Syndrome

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B12 and almost off Requip.

Asquiva profile image
11 Replies

My neurologist referral didn’t go that well as far as rls goes, expect that he did follow a portion of Mayos algorithm that I brought along. The problem is that he kept saying I should switch to a different DA, which I declined. I told him I don’t want to go through this again in a year on another da. He was reluctant to prescribe any stronger opiod for getting off requip , but did agree with continuing tram and gabapentin, thankfully.

In my lab work, he Identified pernicious anemia and ordered b12 shots. I hope that helps. Ferritin is still high so no problem there.

I am down to 0.125mg of requip. You can barely find the piece of the tablet it’s so small. The last two reductions were tough for the first 48 hours but I still am able to get 3-4 hours of sleep with kratom and gabapentin.

Almost to the last step but nervous. Any advice on any of this would be helpful.

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Asquiva
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11 Replies
Joolsg profile image
Joolsg

You're doing really well. I used 50mg tramadol every 4 hours for the 2 weeks after dropping the last dose of Ropinirole (requip). But the best help was cannabis cigarettes ( I don't smoke). It was illegal at the time but my adult children supplied 2 week's worth. It was the only thing that gave me 30mins sleep after 4 or 5 days of zero rest or sleep. It's now legal in the UK so I would advise anyone planning DA withdrawal to plan in advance and get a prescription for cannabis flower and vape pen.It will get better and your RLS will become far less intense.

Stay strong, you will get through it.

Madlegs1 profile image
Madlegs1

Take it really slowly. The very last step is the toughest, so rest a while before you jump off the bus.(Can't do that anymore on modern buses! -I remember being a schoolboy and jumping off buses as they swung around the corner at the bottom of Grafton Street in Dublin. You had to jump backwards, while holding on the the pole!!! I was a right little divil. 😝)

Asquiva profile image
Asquiva in reply to Madlegs1

Wow thanks that’s good advice. I am not having the 24/7 rls symptoms yet but I’m feeling really awful. So tired and yet restless but can’t rest. It’s torture.

Madillc profile image
Madillc

Great work. I'm tapering off Pramipexole for rls and although my rls relieved after a week of lowering dose the anxiety has been the toughest part. Definitely spiked unfortunately. I'm down to quarter 0.125 morning and evening. I found some relief from two smaller doses than one larger one

SueJohnson profile image
SueJohnson in reply to Madillc

Some OTC supplements that help anxiety are Ashwagandha, L-theanine and Honokiol. Prescription medicines that treat anxiety include buspar and trazodone both of which can help sometimes help with RLS. Forgive me if you already know this: First off 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 your transferrin saturation is OK, then if your ferritin is less than 75 take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps with its absorption. If you take magnesium take it at least 2 hours apart since it interferes with the absorption of iron. Don't take tumeric as it can interfere with its absorption. Take it every other day preferably at night at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. If you have problems with constipation switch to iron bisglycinate. If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you probably need an iron infusion since iron isn't absorbed as well above 75. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets. Gabapentin is now the first line treatment for RLS. The beginning dose is usually 300 mg gabapentin. Start it 3 weeks before you are off pramipexole 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 at

Https://mayoclinicproceedings.org/a...

Birdland profile image
Birdland

Don’t be surprised if your RLS gets worse for a few weeks after you drop the last dose. It will get better though, so hang in there.

DicCarlson profile image
DicCarlson

Hang tough! Great advice above!

CrusoeCortez profile image
CrusoeCortez

I went down from 0.5 Ropinerol to 0.25 last night. Despite deep heat spray, smothering my legs in Voltarol and 220 squats I got virtually no sleep. 😖I feel your pain! 😢

Asquiva profile image
Asquiva in reply to CrusoeCortez

I’m sorry, that’s awful. I’m getting about 4 hours a night since cutting from 0.25 to 0.125. I can’t get these tablets much smaller now lol.

Asquiva profile image
Asquiva

Two days off Requip completely yay! Slept two hours last night and two hours the night before. Not sure what to do now because I have to work tomorrow and cannot take the day off. Is day 3 any better?

Asquiva profile image
Asquiva

Ok I am 4 days with no requip now. I am about 48 hours without sleep and have dragged myself into work. I am not having any symptoms during the day but I am up all night with running legs. I am taking 2400 of gabapentin per day in 600 mg doses. I truly feel like I will die. This is horrible. I have an appt with a pain mgmt doc in a month. Need some encouragement I feel like I’m not making it through this.

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