I recently posted about my experience of cold turkey coming off Pramipexole and received so much advice and knowledge, thank you Sue,
I was put on ropinorole, had to do 3 weeks before I could see GP again so only just reached 2g dosage.
Saw GP today who listened to all I have learned here, I am now coming off ropinorole but slowly, and he has increased my Pregabalin to 150mg daily. UK doctors are reluctant to prescribe Pregabalin as it is a Class A controlled drug here.
So what do you advise on time of day for Pregabalin doses, my capsules are 50mg 3x daily. Also how quickly to reduce ropinorole from 2g daily, my tablets are 0.5mg and not easily splittable due to hexagon shape with a central lump each side.
I will also take iron tablets, with orange juice, an hour before breakfast so on an empty stomach, then I can take my calcium tablets mid morning without them interfering with the iron absorption, is that correct?
I am so grateful for the information on here which allowed me to talk to my GP clearly.
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Coldandtired
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You can get 0.25mg Ropinirole in the UK. Speak to the pharmacy and explain you're reducing and need to control withdrawal symptoms.Pregabalin is a controlled drug here in the UK so you just sign the extra bit on the prescription. However, it is used off licence for all sorts of diseases, so there's no issue getting it. Both the NHS and NICE guidance for RLS mention it.
Pregabalin for RLS is only needed at night. GP should start you on 75mg of pregabalin if you're under 65, and increase by 25mg every few days up to 150mg. GPs don't know how to prescribe for RLS.
Look at RLS-UK website.
Pregabalin won't reduce the severe Withdrawal RLS, takes 3 weeks to be fully effective. It won't really help until about a month after you take the last 0.25mg Ropinirole dose.
Have a look at DicCarlson post on augmentation and watch the video by Dr Earley. Show it to your GP as it explains how horrendous withdrawal can be.
UK GPs have no idea how tough it is.
You may need a low dose opioid or medical cannabis to calm the withdrawal at each dose reduction.
It's tough, but stick it out. Once off Ropinirole, your RLS will return to what it was before you started Dopamine agonists. It will be less severe, and revert to night time only.
Thank you. The lower dose ropinorole is in short supply throughout uk for “business reasons “ none of my local pharmacies could get it 3 weeks ago when I started it so I’m hoping coming off won’t be too bad, as I don’t hold out hope of getting lower dose.
You can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US). Measure the tablet and shave off a bit at a time until you get down to half . Then reduce by that amount every 2 weeks.
I was given prami for 15 years and then taken off cold turkey. I was taking gabapentin instead but it made me miserable. My doctor ended up substituting 0.5 mg of ropinirole for the .75 mg prami I'd been taking. I'm currently trying to take 1/2 a dose of the ropinirole a night but am hardly getting any sleep. I am starting to take iron and also 2 kinds of magnesium. I would like to quit the ropin. altogether. I'm trying to figure out how to live with 3 hours of sleep without driving both myself and my wife crazy. It seems as though everyone has a different story to tell and in the long run we just have to figure out what is best for us. I've heard also about D3 and K2, and also p5p or B6 and also that LP299v might help. So it's a challenge and a journey. Hope everyone finds their solution,
I feel for you! Stick it out, I’m slowly managing, reducing my ropinorole, using my Pregabalin early evening and bedtime, iron at bedtime too, magnesium during the day, calcium and vitamin D mid morning, I’ve also found knee warmers help stave off symptoms at tea time, but not always, even paracetamol can help.
The info here on this site is so useful, and everyone’s experience is different yet similar.
Hi Joolsg, 3 days ago I stopped my last tiny dose of Pramipexole (forever)!. I am taking Pregabalin now for 2 months, 50 mg at 4pm when my augmentation would kick in, then 150 mg at 8:30. I just increased my iron bisglycinate to 50 mg at bedtime. I'm hoping 🤞that I wont be struggling for a month yet until the Prami is cleared from my system and the Pregabalin does its job. I'm having difficult nights unfortunately.
🕺🏻👯♀️🌼🌝🧚♀️ Yay. Good bye Prami, you won’t be missed. Are you getting any decent sleep? Or by the dawn’s early light do people have to stay out of your way?
Haha, yes bye bye Prami! But no I'm not getting any quality or quantity of decent sleep😟. I'm still staying positive though, knowing this will somehow pass and better nights ahead . Honestly I need something to knock me out. THC? Opioids? I see my doctor in about 10 days to follow up.
Trazodone. It’s ridiculously sedating and RLS friendly. But do you need sedating? If you’re very tired and sleepy but the urge to move is keeping you awake then a sedating drug won’t help much. I’ve read Kratom can be helpful when desperate. Though it helps with symptoms some people say they feel like it’s preventing their receptors from returning to baseline. I would say to try moving up first dose of Pregabalin to before bed. And add magnesium glycinate (200mg?) to your daytime routine. Always be good to yourself and treat yourself to naps.
Like you, I take 50mg of ferrous bisglycinate. Every once in a while it’s not 100%, but I don’t want to take another 25mg. I bought this other, allegedly, highly bioavailable iron to take on those nights. It’s only 18mg and melts in mouth and it seems to do the trick. Called EZ Melts.
Thank you SalemLake. I will add the early dose of magnesium bisglycinate. I've been taking magnesium oxide/mallate 250 mg. I got about 4.5 hours sleep last night from 2:00 am to 7:35 am. I'm tired while laying there but need to move. I lie awake fairly comfortable wishing I could fall asleep. Then I get up and take a small dose of Tramadol and it helps enough to start sleeping. I'll need to request Tramadol or Trazadone from my doctor. I'm hoping to not need a higher amount of Pregabalin as I'm hungry/tired snacking in the afternoon. Cant seem to stick to a healthy eating plan! Ergo...more inflammation I'm certain. I appreciate your encouragement .
Please don’t worry about inflammation from eating, you have enough on your platter. Just try to avoid eating in evening. If you lie awake comfortably, but want to initiate sleep, then trazodone might just do the trick. It’s incredibly sedating, but not considered addictive and not a controlled substance. I find the ferrous bisglycinate sedating-likely because of the glycine in it. Tramadol doesn’t sound like the right drug to initiate sleep. A 4.5 hour stretch of sleep is not too shabby. If you throw in a 30 minute cat nap 🥳 we’ll call it a life.
Oh wow. That was quick. U must be in US. Please let us all know how it goes. Not so much me, but several people on here are always trying to come up with a better road map for navigating off the DAs.
Well done for getting off Pramipexole. The severity and intensity of your RLS will start to reduce with each week.Hopefully the pregabalin will start to work to cover your nights. You can now adjust the timing and take the doses closer to bedtime so your sleep is improved.
If after another 2 months, the RLS doesn't settle, you may have to increase the pregabalin.
As you know from reading posts and replies, ensuring your serum ferritin is above 100, preferably 200 can really reduce RLS for the majority.
Iron infusions dramatically improve RLS for 60% of recipients.
That's interesting, today I will be brave enough to NOT take my first Pregabalin at 4pm, I'll see if I even have afternoon augmentation any more. If I can wait and take all of it at 8 to 8:30 maybe it will start helping me get to sleep. My serum ferritin was 120 from a recent iron panel. I'm reading everything here on this forum, taking in the various advice! 😊🙏 Oh I have a question regarding iron supplementation: if I'm now taking 50 or 75 mg iron bisglycinate before bed with Vit C, am i using up that iron? Or is it helping to increase my iron stores as well?
There are very different views on iron supplements. Prof. Matthew Walker stated at the RLSUK AGM on 7 October that supplements should be taken in the morning, when hepcidin levels are lowest, as more iron is then absorbed. However, others on here who have resolved their RLS by ferrous bisglycinate alone, advise taking it last thing at night.I have no idea whether the iron is instantly used up, or is stored.
There are detailed MRI scans that can show levels on the substantia negra and Prof. Walker mentioned that iron infusions could be done via lumbar puncture directly into the CNS to get iron to the brain, where it's needed.
Even experts and haematologists disagree about iron pills versus infusions and timings.
You can try taking all the dose 3 hours before sleep, or 50mg at 8.30 and the rest an hour before bed. There's no strict rule, except you should take it all in the evening.I used to take 100mg an hour before bed and 50mg when I woke for a loo break at 2am.
Thank you. Also if hepcidin is low then iron is absorbed more, should we investigate what keeps hepcidin low? I read that less inflammation means lower hepcidin. I need to get back into my anti-inflammatory eating. But...extreme lack of sleep triggers me to eat bad carbs. A vicious cycle.
Hepcidin is the body's natural defence against iron overload and it follows a natural cycle, in the same way that dopamine follows a cycle. But no doubt inflammation affects all bodily cycles.
As Joolsg said there is no need to take your pregabalin 3X a day unless you have symptoms during the day. Instead take all of it 1 to 2 hours before bedtime. The iron should be taken at night since iron is taken up by the brain at higher rates at night. If you don't want to take orange juice at night you can take a 100 mg Vit C tablet. And yes calcium even in a multivitamin as well as magnesium in a multivitamin should be taken 2 hours apart from the iron.
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