Following my post yesterday having stopped pramipexole 2 days ago I was suffering severe rls all day. I didn't realise that after coming off pramipexole the rls severity would still be there and much worse. By evening I was distraught, as after having no sleep for two nights I dreaded yet another night. And as the evening went on my legs got worse and worse. The GP had already given me a prescription for clonazepam so out of desperation before bed I took the whole .5mg (I was only meant to .25mg but of course the GP said I wouldn't get withdrawal from pramipexole). Anyway I slept for 10 hours solid without even a twitch. Heaven. I'm now waiting today to see if I've conquered it or whether it will return once the clonazepam wears off.
Update from pramipexole: Following my... - Restless Legs Syn...
Update from pramipexole
That's great you were able to sleep and I hope it continues for you. Yes once off pramipexole your symptoms will get worse as you are suffering from withdrawal symptoms that will take a few weeks to go away at which point if you are not taking anything else your symptoms will be what they were before you started taking pramipexole.
Thank you Sue. Keeping my fingers crossed.
Hi Carpetbagger.
I took my last pramipexole other 31st of August. I had the worst withdrawal to the point I thought about unaliving myself. It lasts weeks and weeks, maybe it'll be different for you but just thought I'd be honest about how long it can go on.
It's good you've had a night of relief. Good luck 👍
Thank you for your honesty and I do hope you’re withdrawal is over and done with and any symptoms you still have are controlled well. I’m keeping my fingers crossed that things will be ok shortly.
I'm ticking over atm. I'm now on oxycodone 10 mg slow release. I'm loads better but not as good as I feel I could be. So I'm working with my neurologist on a sleep diary with the view to increasing the oxycodone. It took a good 6 weeks to fully work but it was worth the wait. It's the knowledge and encouragement from everyone on here that's pushed me through. I really hope you manage go get through what is a torturous time and the right medication to give you some much needed relief.
Thank you. You too.
I love that - "unaliving". Up there with "deliving," and "ending it all"May I put it into my lexicon?
Thinking of you always!💚🍀☘️
🤣 go for it use it as you like! Xx
Good luck with that drug, it caused me to sleepwalk resulting in a bad fall one night. I would wake up and i would be somewhere in the house looking at a wall and wondering where on earth I was and how I got there.
Hi Carpetbagger, I took my last pramipexole nearly 3 weeks ago after 10 years on it. I followed advice on this site and tapered down very gradually to half a 0.088 tablet. I had increased augmentation symptoms after catching COVID in October so contacted my surgery to ask for support. They decided it was a low priority and my phone consultation is actually this afternoon.!
I decided things couldn’t be worse so I stopped cold turkey at start of this month. Like you I had two dreadful nights, and days with legs worse than I have ever experienced. I resorted to Solpadeine max ( thanks Jools for suggesting this on another post) and had a reasonable 3rd night. Since then I have good and bad nights, but have noticed my daytime symptoms have virtually gone and I only get the restless leg symptoms during the first half of the night now.
It’s a difficult journey Carpetbagger and I hope you start to feel the benefits of getting off the dreadful P soon. Everyone on this site is so supportive and knowledgeable and it’s kept me going through these tough lonely nights x
Thank you for you kind thoughts. I'm glad you are on your way now. Yes, I found so much comfort from this site, both in help and knowing I wasn't going through things alone.
What are you planning on taking now to control your RLS?
I’ve been put back on clonazepam at half dose, .25mg. It appears to be helping a bit with the withdrawal from pramipexole. I take 322 mg ferrous fumarate in the evening.
Actually that was a reply to lamujer when I asked what she was going to take now..
Hi Sue, I spoke to my GP yesterday and he has arranged for me to have blood tests first to check my iron levels. My last ferritin test was 69ng/ml in Feb 24 ( up from 16 in Feb 23 with serum iron level of 9.8) I’ve been taking gentle iron (Spatone) 2 sachets alternate days to raise it. He said to continue with 2 Solpadeine max meanwhile as they provide similar codeine level to prescription codeine . I don’t feel a switch off of my RLS with the codeine, but it’s so much better than the last few months.
Congratulations for getting off pramipexole! I know that wasn't easy.
You really need something stronger than the 25.6 mg of codeine you are getting from the Solpadeine max as your RLS is not under control yet. Codeine is a week opioid and the usual effective dose according to the Mayo Updated Algorithm is 60 mg to 180 mg. Since you just spoke with your GP you might want to wait a few weeks and assuming your RLS is not under control then which I strongly suspect then call him and tell him you need more codeine.
If you haven't read the Mayo Algorithm, I strongly suggest you do since it is the bible on RLS at Https://mayoclinicproceedings.org/a...
The 2 sachets of Spatone is only giving you 10 mg of iron and you need at least 75 mg, Here is the usual advice I give:
If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness of the blood thinners and of the iron so check with your doctor. Otherwise, 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. Also take Lactobacillus plantarum 299v as it also helps its absorption.
Take it every other day as more is absorbed that way, 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 (or magnesium rich foods), calcium (or calcium rich foods) 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 turmeric as it can interfere with the absorption of iron. 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.
I notice on your profile that you are taking a statin. Statins make RLS worse. Nexlizet (Nustendi) is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) reduces cholesterol although it doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS. And then there are Triglide (Fenofibrate, Fibricor, Lipantil, Lipofen, Supralip) and Bezafibrate (Bezalip) which are not statins which seem safe. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, low potassium. 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, fennell, low oxalate diet, a low-inflammatory 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, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), 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, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
One more thing the diuretic furosemide causes low potassium so you may want to take potassium pills to bring it up because low potassium can make RLS worse. Discuss this with your doctor and he may want to have this tested.
Thank you Sue for your detailed advice, my blood test is early in the New Year and I’ll make another appointment to speak to my GP soon after. I’ll certainly speak to him about increasing the codeine dose, increasing my iron intake with ferrous sulfate, and the potassium issue you raise. I stopped my statins a few months ago as I had picked up from this site that they can exacerbate RLS, and my Cardiologist had told me I was low risk, but recommended them on balance due to my age. I will talk to him about the alternatives you suggest as I think his recommendation would be listened to by my GP. I follow a diet based on Zoe principles and have reduced my cholesterol slightly through this. Your husband has made an impressive difference with his vegan diet. I appreciate your feedback
You may have seen this, but in case you haven't when you have your test for ferritin stops taking any iron including in a multivitamin 48 hours before the test, avoid a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible.
Thanks for the reminder , I’ve made sure my blood test is before 9am
Solpadeine max sounds wonderful but I don't think it is available in the U.S. I think codeine is a prescription item here.
Hi Carpetbagger,I was very happy to hear you got a great sleep.can you please tell.me if Clonazepam is better than Phenergan, as sue has advised me they make RLS worse. My gp prescribed Phenergan yesterday, I haven't taken any yet as I don't think I could bear any rls getting worse.
I was on clonazepam for 20+ years and it always controlled my rls. I didn't realise things could be so bad until I took pramipexole and now suffering coming off it. Clonazepam is quite an old drug and I was prescribed it in the late 90s. I used to take 15mg a day before I was taken off it but now I'm only on .25mg. I'm just waiting to see if it is so effective after being on a DA. I think it is only suggested as third line treatment. It probably isn't for everyone but it worked in the past for me. We're all different. Sorry but I don't know anything about Phenergan.
I've just had an operation on my ankle, and have had the most awful restlessness from it. Particularly at night.The surgeon is blaming my history of opioids-- which is absolute rubbish, but won't tell me what they gave me during the operation.
Anyway - long story short- I had some Diazepam (valium) from previous operation, and started taking 2mg every 4 hrs at first .
It worked a treat and I'm now down to 1mg every 6 hrs with good control. Along with my normal medication of oxynorm 5mg every 6hrs now.
So hopefully I'll be back to my old regime soon.
Incidentally, Oxycontin 10mg was useless, and lasted only about 2 hrs, so I had to change over to oxynorm 5mg.
Luckily I have a good stash for emergency use.
Hope that helps.
I'll post separately about my experience and coping strategies for this particular episode.
Cheers to one and all!💚🍀☘️👍
The problem with clonazepam is it has a long half life of 40 hours so can make you sleepy the next day. As far as controlling your RLS, Carpetbagger is the exception. It is no longer used for that as it hasn't been proved to be effective.
I feel a bit unusual in this respect as it worked so well for many years and seldom made me sleepy the next day, I only pray that it is as effective with me this time as it was before.
I certainly hope so too.
You need to file an official complaint. Any GP that says you won't get withdrawal from Pramipexole needs to go back to school.
Pramipexole withdrawal or...?
From Ropinirole to Pramipexole 
Weaning off high dose Pramipexole 
Slowly withdrawing from Pramipexole
Needing to get OFF Pramipexole
