Oh my friggin days! Since my last relatively positive weaning experience post, things have changed quite a lot. Still sweating excessively on exhertion but the worst is the aching. My legs ache so much and feel very weak all the time. Working is becoming increasingly difficult (property maintenenace) and night time PLMD has gone ballistic, so my wife says. She counts 8 seconds between leg spasms/movements. Yesterday morning I had RLS all morning when it’s usually in the late afternoon/evening. Surprisingly, I’m having several almost totally sleepless nights each week. I feel so tired and exhausted. My wrists, hands and fingers ache and feel stiff. The pain comes and goes but is distracting and debilitating. I’ve had to cancel 1 1/2 days work this week already. I’m awaiting a phone review with my GP next Wednesday. Hope I make it that far. I’d get signed off if I wasn’t self employed. Life is a bitch right now. Shameless Self pity over now.
Honeymoon is over - Pramipexole weaning. - Restless Legs Syn...
Honeymoon is over - Pramipexole weaning.
Go back up to the last dose and then as your symptoms settle, reduce much more slowly by a smaller amount. And ask your doctor for a low dose opioid temporarily to help. What dose are you on now?
Ah Sue. Faithful as ever. Bless you! I’m reducing 1/2 tablet every 2 weeks. I’m currently on 4 1/2 from 6. I’m already taking 8 paracetamol and 8 codeine a day.
Try going back up a up a half tablet, and when that settles go down a quarter of a tablet every two weeks or so. I know you are probably impatient, but unfortunately, you have just seen what can happen. I don't know how much codeine is in your total of 8 tablets, but the usual effective dose for RLS is 60 to 180 mg and it sounds like you need to increase it.
Medical cannabis helps too.
Hello Sue. This morning I received a diagnosis of Fibromyalgia. Oh how lucky am I?! As you seem to be the RLS Queen (and I mean that respectfully), I’d be interested in your thoughts. Much obliged. Pete
That's terrible - you certainly didn't need that. However, it one respect you are lucky. The treatments for RLS involves much the same treatments for fibromyalgia. Specifically gabapentin which is the first line treatment for RLS is also one of the best treatments for fibromyalgia. mayoclinic.org/diseases-con... On this site Cymbalta is recommended for pain but can make RLS worse in many - it did for me, but you could try it one time and stop it if it does. The same with Savella and amitriptyline. Cyclobenzaprine is safe. On other sites yoga is suggested which is also good for RLS and checking for low Vitamin D, also recommended for RLS. And medical marijuana also helpful for RLS. And massage, also for RLS. And exercise - but make sure it is moderate and strenuous exercise can make RLS worse. On the gabapentin: 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 atHttps://mayoclinicproceedings.org/a... However for fibromyalgia the gabapentin is usually taken 3 times a day and that might not be enough at night for your RLS, so you might need to take more at night than you do during the day. Discuss all of this with your doctor.
How do you increase GAB 100 MG when it comes in 300MG Capsules?
You ask your doctor to prescribe 100 mg capsules.
I've found I can sort of unscrew the capsules and empty out half. Worth a try if you can't get the 100mg capsules straight away.
I do feel for you. That ridiculous little tablet - who knew coming off it would be so hard. I am down to 1/2 tablet 5 days a week and a full one the other 2 days. I really felt it the last 1/4 I cut out but that’s settled.
I have to pause the process soon as have surgery in October but my goal is to get to half a tablet a day.
good luck x
Hi, I have been on pramipexole for 7 yrs but due to augmentation I have cut down to half a tablet but that took 14 months to do. I tried a quarter of a tablet but had to go up to half. I don’t think I’ll ever be fully off of pramipexole. The doctor prescribed 100mg of Pregabalin and that works 8 times out of ten but it is such an addictive tablet I’m surprised Doctors still prescribe it
Pregabalin is not addictive. One can become dependent on it, but that is different. And pregabalin and gabapentin which are basically the same are the first line treatment for RLS. Check out the Mayo Clinic Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a...
Hi, I didn’t explain myself fully. I should have said Pramipexole being the addictive drug
Hello Sue,
Wanted to give you and anyone this update with regard to my own RLS
I started off being at 37 with my ferritin, took Iron supplement every day it took 1 month to get it to 45, now after 5 months I have gotten my ferritin to 96 , wanted to get to 100.
I am continuing to eat a couple pacific oysters every day and have reduced my iron once per day to 15 mg of elemental iron. I no longer have my restless legs, a doctor said if I could get to 100 it would and should subside. You have no idea the relief it has been to get here. I now eat some meat from time to time and avoid foods that inhibit the uptake of iron in the blood, no more coffee, tea , or dairy I seem to be doing ok now ,
Thank you for all who have posted , and for those that havent gotten results please go and get your ferritin checked
That is great !!! So pleased for you.
Do you find your quality of life has improved now that you're on less pramipexole?
No difference at all
oh I’m sorry to hear that
try going off foods containing glutamate and take GABA supplements. That has helped me. I am down to 1/4 my original Requip dose. I know , it is just horrible being awake all night with RLS ! No sleep turns one into an animal! I would try to avoid Lyrica. Made me feel half alive.
did those things help with withdrawal do you mean, or RLS (or both!). I've not heard of GABA supplements before..?
both...going off Requip is so difficult because of augmentation. But GABA is such a help.
Ok thanks!
try combining 250mg. GABA and a very strict glutaming diet. I KNOW how you are suffering. Its bad enough not sleeping, but with pain and RLS ! I know , ive had this for over 40 years. Weaning off of Paramexol...down to .25 from 1mg. God bless and help you!
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