Hi, I’ve been on pramipexole 0.18 mg for eleven years, decided I wanted to get off them and try manage my legs with natural methods. I seen my GP who reluctantly prescribed me two weeks worth of Tramadol 50 mg.
So Monday this week I stopped the pramipexole, took a tramadol, which did not help one bit, other than make me drowsy, and I have to say that was probably the most hideous hell of a week I’ve ever experienced, no sleep at all and the misery and despair I felt at night could have actually put me over the edge.
What I find particularly frightening is I didn’t realise pramipexole was so addictive, hand tremors, cravings and a mild headache all week. I couldn’t go to work on Wednesday as I was that zombified.
Needless to say, I caved in last night at 4am, I just couldn’t take the sensations in my legs anymore, so took half a 0.18 tab. I’m disappointed and to be honest I don’t think now I’ll ever get off this medication. The thought of going through withdrawals for possibly another week plus just doesn’t bare thinking about and I take my hat to those that have managed.
A very distressing painful experience
Best to all
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Deeperside
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Oh how I know your pain Damn I am sorry you have a GP who doesn't understand RLS and drugs, you are from the only one on here.
You need to make sure you are WELL PREPARED for any change in drug regime. Sometimes people with mental health problems have short stays in hospital while undergoing a change in drug regime just in case.
You need to have an idea of what drugs can be used to wean you off the Mirapexin - Tramadol, Codeine, Lyrica to name a few can be used as can very strong opiates such as Oxycontin and Methadone. Then you need to have a reducing dose and an idea how often and how much you drop and for how long you remain on the lower dose to adjust to withdrawals. YOU DON'T WANT TO GO COLD TURKEY this is very dangerous and can cause lingering problems.
You want to make sure that you can devote time to insomnia and feeling like shite - don't start it the week before the trip of a life time or your wedding. You may need a day or two off work, you may need more - there are a lot of things to be considered before switching drugs IF YOU WANT TO SUCCEED. The better you prepare, the better able you will be to move on.
Are you aware of dietary issues around RLS? Have you researched Iron levels and possibly supplementing with gentle iron? Do you have a stretching strategy? I used yoga videos from Youtube. Hot baths/showers, weighted blankets, etc. Have you access to Cannabis or Kratom, have you considered these?.
Please don't think I am being patronising but I don't think people realise how important it is to cover all the bases before doing this. I have learned from years of doing it the wrong way and suffering bad - that's not happening any more!
OK now my gripe time. You are not addicted to Mirapexin - you are dependant on it. You do not say a diabetic is addicted to insulin, you say a diabetic is DEPENDANT on insulin to control their condition. Yes you will have withdrawal symptoms - so would someone changing an anti-psychotic medication. Yes you will have to with draw slowly as may someone taking an antidepressant.
Sorry had to get that out as it really pisses me off as it instantly puts so many people off exploring drug treatments due to the stigma surrounding addiction. It needs to be addressed so people can get relief.
Good luck planning and I look forward to reading about your success.
I’m waiting to hear what my ferritin levels are and will find out next week. I’ve been supplementing with iron bisglycinate, potassium, magnesium, vitamin b1 and D3, plus have magnesium spray, but I’m guessing none of these are going to be of much use stopping cold turkey.
I’m not normally a cannabis user but I did try smoking some this week which helped a little but ultimately the legs kicked off again within half an hour.
Kratom I’ve never tried but I do believe you can order it online from Holland, so maybe I’ll look into that.
Having being addicted to Alcohol for many years, and after a ten year battle which I’ve overcome, and have been sober now four years, the cravings I’ve felt this week, along with headache and hand tremors would indicate a level of addiction, and dependency which I was not prepared for.
I’m considering having an iron infusion privately depending on result of ferritin test, and it’s costly and not available for RLS in the U.K. sadly.
I’m going to try and manage staying on this half dosage at the moment and see how I get on seeing the GP next week.
Hi Deeperside, I don't think I can add much to what Raffs said - he articulated everything I was thinking and expressed it better than I could. I wouldn't necessarily give up on the idea of coming off pramipexole but maybe do it when you are better prepared. Fortunately, you have kept your dose to a relatively reasonable level over the years and if this experiment enables you to lower the dose that will represent at least a modicum of compensation for all your suffering.
I was wondering how much you have been quoted for a private iron infusion? I am hoping to arrange one here in Ireland but the cost is looking very high.
On a separate note, I use kratom (I order it from Holland) and find it a very useful tool in my RLS treatment armory. It is much easier to discontinue than oxycontin and seems to be as effective against the dreaded jerkies. I have read posts from a few people who used it to help them come off pramipexole so it might be worth trying at least.
Hi, I contacted the iron clinic in London and a 500mg infusion is £370 plus £200 consultation, and a full infusion costs £560 plus the consultation. It’s expensive, and Travelling costs also come into the equation so I’d likely be looking at nearly £900 I’d guess coming from Scotland. To be honest I’d do it in a shot if I knew it would work, but sadly it’s a complete gamble.
I also read on here that only certain types of iron infusions are helpful for people with RLS so I will contact them again if I decide to go ahead.
I’ll read up more on kratom, and to be honest I’d pretty much try anything if I thought it would help and it’s safe.
Will try a half tab tonight and see how I get on, and if need be I’ll take more if my legs start kicking off.
This past week has been severely traumatic and some peace is definitely in order.
Thanks so much for this information. It is much more expensive in Ireland. If you look for the published recommendations of the International Restless Legs Syndrome Study Group (IRLSSG) on iron (google 'IRLSSG rls and 'iron') you will find the recommended formulations contained in the document. From memory the one that most research has been conducted on is Ferinject (known as Injectafer in the US). I think the forumulation is ferric carboxymaltose. The group recommends a single iv infusion of 1,000mg which is 20ml of Ferinject - though you should check these figures as I am going from memory here. The recommendation is that the infusion should be given over a 15 minute period.
Deeperside you have had some great advice and information but I just wanted to pick up on you telling us you have been 4 years sober .As someonewho has had friends and family with addictions I have the upmost respect for your achievement! Well done you should be so proud of yourself. Best wishes Pipps x
Yes i have seen first hand how dofficult it is .I lost a very close friend to alcohol poisoning several years ago and i saw her fight which she sadly lost aged 53 . .I am doing ok thankyou x
I’m really sorry to hear about your friend pippins, alcohol addiction claims way too many good peoples lives on a daily basis which is a tragic waste of life. X
Elisse2, it certainly sounds better than what the wife calls me
Deeperside - congrats on getting off the alcohol, not an easy battle. Well you should be well able for a fight with any chemical now. If you have had help coming off alcohol I am sure you have been well warned about other substances, not wanting to be too personal, so you know yourself to take due care making sure to use only for the physical issues. Cannabis, I find isn't very long lasting so needs to be puffed regularly at lower doses than say getting stoned - well in my opinion. Eating it lasts longer but I find smoking allows quickest relief. Kratom is a mild opioid type herb and there is a great thread on it here:
when using/considering using any drug I always advise a lot of personal research as we are all different and all react differently to them. ANY recommendation on a website should be thoroughly studied by the individual to make sure there isn't something specif to them that makes the issue dangerous - on a weight gain question you might be offered the advice of peanut butter and avocado, great for many but if you have a peanut allergy - bye bye!!!
I'd hang tight on the Iron infusions at the moment but if you are wanting to push ahead is it possible to get them cheaper in a different country? I know many who went to Turkey to get dental work done as it was cheaper there than in the UK & Ireland so there could there be a possibility of getting it done cheaply as part of a holiday, just a thought!
Thanks Raffs, I relapsed many times with Alcohol and on a few occasions my GP prescribed diazepam in very small amounts to get over the initial three days which are the worst, and sometimes I just went cold turkey, as I did after my last drink four years ago.
My current GP was reluctant to give me tramadol given my history but in the end he agreed to a two week course.
It’s interesting as the British National formulary which is a GPs bible, says at my dose of pramipexole I could just stop taking it, well you can, but it ain’t a pretty scene as I’ve discovered!
I will maybe give kratom a miss as I’ve just read it’s potentially addictive, and the last thing I need is another addiction.
Thanks, I’d not even thought of iron infusion abroad, so will do a search.
I’m sticking with pramipexole at the moment, took a half tab last night and slept all night without a twinge so will see how it goes.
Yeah its a balancing act using the opioids. Personally they are the best for me but very understandable where you and your GP are coming from - just something else to add to the misery!
One thing about relapse is its quite a natural part of breaking the addiction cycle that a lot of people think doesn't really or rather SHOULDN'T exist and then when it happens it really knocks them.
The Kratom isn't that addictive, it is less so than Tramadol and if it effectively controls your RLS then it could potentially prevent a relapse, but yeah tread carefully.
When taking tramadol or codeine medication coming off pramipexole, it helps to take the maximum dose regularly, that is 4-6hrly rather than just once at night. (Don’t exceed the 24 hour dose.) It works far better this way. As you reduce the pramipexole, reduce the opiate to one, four hourly instead of 2 & then next lowering of pramipexole skip the morning dose & next lowering, skip afternoon dose etc
Just to let you know you have my sympathy. Having being prescribed a large dose of it without any forwarning of consequences by an irresponsible neurologist, suffered the nightmare of augmentation and finally weaned off it, over 10 months (it WAS a big dose), I am now free of Pramipexole.
I have nothing positive to add to the exellent advice that others give. However, it might be a good idea to research a bit more thoroughly into iron infusions as a magic cure (as I was promised Pramipexole was), some evidence has emerged only this year that for some people, iron infusions might be harmful.
• in reply to
Manerva can you tell more on iron infusions can be harmful for some people. ? Do you mean iron overload..? I know alot is talked about the iron connection to RLS, but i also know it doesnt work for everyone either taking iron supplements OR having the infusions.
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I'm afraid I don't keep a record of what I read. I'm retired!!!
I do vaguely recall reading several.times that iron is only a factor in about 22% cases of RLS.
The other is a study another member posted a link to. It was a study of a family who all had RLS and all had signs of iron overload including "iron plaques" in their brains.
The study, if I recall rightly, suggested that iron related RLS wasn't necessarily due to a general lack of iron in the brain, but a failure to use it due to dysfunctional mitochondria.
If this were the case iron infusions could both fail to treat the RLS and cause iron overload.
It didn't exclude iron infusions it just suggested careful screening first. The "screenibg" unfortunately seemed to be high tech scans.
Manerva, you have miced up teo studies. The one anout the family with iron overload, only two or three of them had that. Essentially an n=1 situation. Several other much earlier studies have actually showed that people with RLS appear to have less iron in tge relevant parts of their brains, the substantia nigra and another parts close by of which I have forgottrn the name.
The other study was into the iton processes, trying to find out where rhings get wrong in people with RLS. They found reduced mitochondrial function in blood monocytes, thus not mitochondria of all cells. Blood monocytes have a function in recycling and storing iron. It is still elusive whether the reduced mitochondrial function also occurs in brain cells and how it relates to earlier observed alterations in the brain. One small research step of a long, long research way. No more.
So am I. But the (side effects of) RLS has limited my energy and indeed, RLS and especially the neurology and iron pathways involved are complicated. Together we'll get there.
I have just re-read the ONE article I referred to. I don't think I've actually mixed anything up.
True it was only about 3 people. However it did refer to mitochondria.
Mainly though, it gave a clear explicit warning that an MRI should be carried out before considering IV iron. I didn't misread it.
Agreed it is only ONE study, but it is the most RECENT study I've come across so far. 2019. It also refers to other studies, (which I haven't yet followed up).
I have come across an excellent article which comes up with evidence based guidelines for iron therapy for RLS based on a meta analysis/ literature review.
There is, it appears, a lot of evidence for brain iron deficiency in RLS. However, as I have read it so far, it doesn't say WHY there is. Clearly iron homeostasis is regional, i.e. in differs in different parts of the body. In fact it seems organ soecific. Hence even if other parts of the body are not iron deficient, it may still be deficient in the brain.
As far as I can tell, this article doesn't give an explanation for the deficiency. Furthermore, although it mentions the blood brain barrier, it doesn't appear to offer any evidence that iron can't get across the bbb in RLS. Any failure to cross may be a matter of iron regulation.
Reading at least one other study on mitochondrial iron, it does seem to explain WHY iron deficiency is found and this works at a cellular level, not a systemic or organ level.
Not absorbed it fully yet, but it appears that in RLS there is an excess number of dysfunctional mitochondria that take up iron from the cytosol leaving the cytosol with iron deficiency.
It seems to me therefore, that putting extra iron into. the system is like pouring water in a leaking bucket. The more you put in and the faster you do.it, the fuller it gets. It would be better to fix the leaks!
Additionally, without fixing the leaks, the bucket will soon empty again.
IV iron, bypassing the hepcedin regulation is pumping iron in fast and furious. It may cause iron overload. This would of course only be temporary, but it might be enough to cause harm. Especially if more is being taken in by mitochondria.
(This is analogous to giving dopamine for RLS and less so DAs. The dopamine levels going up so fast leads to increased downregulation of D2 receptor sites and hence a worsening of symptoms - augmentation. Another leaking bucket? There is evidence that giving a DA more s l o w l y can help with augmentation.)
I further suspect that the level of "iron deficiency" detected in the brain depends on HOW it's detected i.e. if it's detected by methods that measure the amount in fluids surrounding neurons, e.g. CSF then it may appear that there is deficiency. However, this won't directly assess how much there is IN cells, or more specifically, in mitochondria.
Iron, being what it is, i.e. possessing ferromagnetic properties can be detected by MRI.
It's possible then, that although any blood or CSF test may indicate a deficiency of "available" iron in the brain, an MRI might actually show an excess.
A final thought, many previous studies show a general iron deficiency in the brain for RLS. They may not explain why, nor say where the iron has gone. This LATEST study, plus others, do suggest an explanation, but also suggests that IV iron, which CAN improve RLS (because it's filling a leaking bucket) may have iatrogenic consequences, iron overload.
Thanks Manerva, and I have to say well done getting off a high dose, it couldn’t have been easy for you, and it’s really quite scary that a neurologist would have you on such a high dose, it just shows you that despite their qualifications and knowledge on their subjects, they appear to fail in many ways treating RLS.
A bit worrisome iron infusions could have a detrimental effect, so if I decide to go down this route I’ll mention it to the doctor at the clinic prior to the appointment.
I didn't want to shower cold water on peoples hopes. It just means there's risks with rushing into having IV iron. There are risks crossing a proverbial road. I hope some easy way is found of calculating those risks.
My heart really goes out to you. I went off cold turkey after being on for two years and experiencing augmentation. I had no idea the hell I was in for. Like you, I was never told and had no clue pramipexole was such an addictive drug.
I experienced two weeks of horror. I sound like I'm being dramatic, but those of us who have been through it know horror is a good word for it. The emotional effects -fear, paranoia, extreme anxiety...the physical- which for me was total body rls and my legs so crazy and painful I literally fantasized about cutting them off, and exhaustion like I've never experienced in my life because of getting one or two hours of sleep a day.
I could not have done it if I had to go to work. At that time, I was on a hiatus. I did cave after the third night and take half a pill. But my symptoms were worse that night, I guess because of augmentation, so I decided to just go for it. The thing that kept me going was believing there was going to be an end...and never wanting to go through this again.
After coming out on the other side with my rls so much better, I'm glad I did it. Even though it was quite possibly the hardest two weeks of my life.
Knowing what I know now I would tell someone considering it to be prepared. Clear your schedule for two weeks. It's a horrible way to use up vacation time, but I think the added stress of going to work might have sent me straight to a psychiatric hospital.
Plan to be good to yourself. Realize you will not be sleeping and don't stay in the same room with your significant other. Set up a separate bedroom for yourself or make a comfy spot on the couch. Purchase vibrating pillows, massagers, plenty of Epsom salt for hot baths, tonic water with quinine...basically any remedy you've head of that you can afford. Stock up on your favorite foods and snacks...put shows you want to watch in your netflix cue, buy a new video game, create a special music playlist...anything that will distract you. Be prepared to grab a few hours of sleep in a dark room in the morning when it lets up some. Make sure to go outside during the day and get some sunshine and light excercise.
And let yourself cry. I found I had an overwhelming urge to sad cry...almost all the time. It was better when I just went ahead and let it out.
I'm embarrassed to say that a couple of nights I intentionally got drunk just hoping it would help me sleep. It did. But it made the overall anxiety and depression worse. And god knows I didn't want to have to also detox from alcohol.
Im not a doctor, I'm only going on my experience. Of course, if you feel suicidal during the process, please seek professional help. But for those who are determined to break free of pramipexole, I want to give you hope that it can be done.
When my doc gave me this drug he was super flippant about it...like it was no worse than tylenol. It is a travesty that this drug is prescribed without honest counseling about its withdrawal issues. We have to be our own advocates and... do our research and support each other.
Hi Cara, thanks and I appreciate your honesty. I do have to say, your quite possibly made of stronger stuff than I am as the thought of going through that withdrawal for TWO weeks actually horrifies me in so many ways. I’m so happy though you came out of that experience in a much better place, so it paid off thankfully.
I was thinking, despite what I’d read on here, that I’d get through it in a week to ten days, but couldn’t get past four nights as I couldn’t take the misery and despair anymore. The whole experience was one I hope to never go through again, despite the fact I’d still like to get off pramipexole.
Like yourself my Doctor just said oh there is a medication that helps with restless legs and prescribed it, Eleven years ago, and I’m seeing him again next week so will give him the low down on my few days of trauma.
I can actually see why someone could end up in a psychiatric ward as the experience is truly a nightmare physically and mentally.
My only real benefit from this experience is I’m now on half the dose I was, and my legs have been fine the past two nights, though I’m still experiencing cravings and hoping they pass soon.
Thanks again for sharing your experience and I’m so happy you are in a better place now.
I should have added I would not try it again without a doc's help. At the time I started I had no idea what I was getting into. I had recently moved and was without a doc.
And good for you you've been able to reduce your dose!
I think the sense of isolation during the whole process was something I didn't expect. I was in a terrible relationship at the time. He just went to bed and left me on my own (I understand if someone works they would have to do that, but he didn't) I thought many times that if someone who loved me stayed up with me some...rubbed my legs, talked to me, encouraged me...watched movies with me...it would have helped. If you have a partner, friend or family member willing to do that, jump on it.
On the upside...that experience gave me clarity I needed to get out of that relationship, lol.
Hi! What did you take to get through withdrawal?. Did the worst part end after 2 weeks ?. In my last failed attempt, I almost completed 7 weeks but had no relief from the intense RLS, totally uncharacteristic to what I have ever had even before being put on DA. Also, what do you take now ?
Heatherlss, how you managed to stick that out for seven weeks is almost unbelievable. I’m sorry you had to go through that misery for all those weeks without a let up in symptoms.
I seriously could not have done two never mind seven weeks.
Cara, I completely get you with the isolation, it’s such a sad painful lonely thing to go through, and people don’t seem to understand how horrific it is due to the physical effects AND the emotional effect.
The night I caved in a 4 am, I was walking around the sitting room totally scared to go back to bed as I knew what was in store for me, so I kept pacing and eventually took half a tab and went to bed.
I’ll give my GP the lowdown this week when I see him, and I’m also going to suggest he warns patients going on this drug of the great difficulty they will have getting off it.
Oh and forgot to say, many years ago when I was still drinking alcohol, I’d run out of tabs at a weekend, I had a horrendous night and couldn’t take anymore so I grabbed a bottle of vodka and drank half the bottle! It worked but i certainly would never recommend it, but desperate situations can call for desperate measures as you well know.
I've been there myself - a belly full of alcohol being better than legs full of RLS and a head full of desperation.
I have been laid very low by RLS and have come far too close to the edge for my liking - I spent about 18 months without treatment and it was a living nightmare - 20+ hours of RLS all over my body each and every day. I came so close to killing myself that I have made sure I am never left in that desperate situation EVER again.
Just want to add, Sugamama321 - people are not addicted to Dopamine drugs, there is never that stage where anyone is saying - "I want to get off my tits, must take 0.88 mcg of Mirapexin as it will give me a better buzz than the big bag of cocaine I have!!!"
These drugs are DEPENDENCE forming and people can be DEPENDANT on them, get withdrawals and still not be addicted. There is a huge difference in addiction and dependence and people really need to use the right words to prevent putting people off treatment options. I will try and find a decent research article but in the mean time:
Addiction is a disease characterised by behavioural issues, and dependence refers to a physical reliance on a substance. The two conditions often occur at the same time, but a person can be dependent on a substance without being addicted to it.
I am not sure who runs the site and haven't read all they have said about Addiction v Dependence bit that bit above is a passable explanation. It is not a thorough explanation but it is a good rule of thumb to tell the difference between the two. I don't hold with the addiction is a disease (it certainly causes DIS - ease but there is a difference). Sorry to bang on about this but this annoys me almost as much as being a poor subjugated husband
Twenty months with those symptoms must have been sheer living hell, what a traumatic period of your life, and I totally understand why you would have felt suicidal with those symptoms over that long period of time.
I’m glad you got through it, and in a better place now.
I agree, I don’t think addiction is a disease from a view that you are born that way, but given the multitude of factors, such as early life trauma, PTSD , depression, anxiety etc, I do believe it permanently alters brain function, so the end result is a disease.
If I drank this evening, I would pay for it tomorrow with cravings for more, plus tremors, and it would only need to be a gulp of wine to trigger this off, so I’m guessing once that pathway in your brain has been well and truly formed, then there is no changing it.
I do realise it’s way more complicated than that, but it does not matter what the reasons are for drinking, good or bad, I pay for it the next day.
I’m sure the same can be said for others with drug addictions.
Oh dear. Please keep trying with a newly laid out positivity & say to yourself YES. I CAN!! & combine it with coming off it bit by bit & keep REPEATING.YES I CAN & see how itgoes
I was put on a high dose of fluoxetine decades ago for ME, which was at the time dismissed as a depressive illness. When I realised that it was doing nothing for me and tried to stop it, the withdrawal was horrific - dizziness, mood swings, feeling like I was going mad. I worked out myself how to very slowly reduce the dose to avoid the withdrawal symptoms, while weaning myself off it. It was eighteen months, before I was able to stop it altogether. This may have to be the way you deal with this.
For the rls, I found a high daily dose of magnesium works wonders. If I have incidents of misfiring nerves, I can feel the rls trying to happen, but it amounts to nothing more than an unpleasant tingling - far from the awful compulsion to kick, to relieve the discomfort, that I used to have. Other people have discovered that other things work for them, but the magnesium doesn't help. Good luck with finding something more natural that works for you - and that doesn't make you addicted!
Hi, thanks for sharing. I had a similar experience 24 years ago with paroxetine, I said to my GP when I was coming off it that I was experiencing shock type feelings in my head and he just dismissed it like I was imagining it!
I also had quite a problem coming off venlafaxine a few years later, but I think I managed off it in two to three weeks cutting the tabs up into tiny pieces.
You are likely right in slowly reducing the dosage over months, and going by my experience over the last week or so, my brain doesn’t appear to like a reduction in dosage. I did reduce it by half though which is a big drop. I’m managing on 0.09mg but only just, so will stay on this dosage for a while, before trying to reduce further.
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Damn I am sorry you have a GP who doesn't understand RLS and drugs, you are from the only one on here.
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