Hi, I simply can't believe I found this forum, what an absolute god send. My friend ( my ex) has been on pramipexole for 6 years, going up pill by pill over the years. He is currently on 3 x 0.88 and still had bad sleep and other symptoms, he is a mess, I believe a huge factor in our relationship ending. Every day he is un rested and is easily triggered in conversations. He has tried coming off the drugs before, he was originally on 4 x 0.88 and was able to come down to 3, he got down to 1.5 x 0.88 and he describes it as sheer hell, convulsing and un able to sleep let alone function like a human being, hence why he is now on 3 pills.
Sometimes he forgets to take the pills and when this happens within an hour the twitches start in his legs and even if he takes the pills he then still cant sleep, it is although his body has not registered the drug entering his system and he will be up for 24 hours easy.
When he tried to taper off, he split the pills In half, from what I have read a little of people suggest coming off a pill at a time? He is frightened at this aspect due to the response his body had tapering on halves let alone a whole pill. He is concerned he will not be able to drive our son to school and work.
Any advice is greatly received,
I really want to help him get back his life. The doctors should be accountable for this, it is absolutely heart braking.
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starryeye
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First of all, it doesn’t sound like he is addicted. Dependent yes, but not addicted. There is a difference.
What it sounds like he is going through is a withdrawal that, I’m sorry to say, sounds very familiar. Withdrawal from dopamine agonists is hard. Once he gets off he will feel much better, but unfortunately he needs to expect a rocky road to get there. He needs to withdraw slowly. Of course he is going to be scared; coming off any pill that you have depended on to get you through is tough. If he was addicted, though, he would not be willing to try to withdraw.
Others will be along with more advice; I just wanted to give you my two cents. Hopefully it gives you hope knowing that
1. he is not addicted
2. he is going through a withdrawal that many of us recognize
Thank you. To be honest I am surprised he is willing to try again but he was in tears last night and broke down, after experiencing an evening recently where he was unable to sleep so he had to prop himself up on the kitchen counter top to get relief. Wether it is dependancy or addiction is not the importance, but thank you for offering your opinion as it is nice to hear it could be worse than it is I suppose, all I know is that its taken a lot for him to finally be willing to give it another go, I just hope he goes through with it. Any natural help would be appreciated also, any herbs, supplements ..... it would be great to have a plan of action, I also don't know how long this is likely to keep him unbalanced as he comes off. kind regards
I am sorry he is having a tough time and you are a gem for doing what you can to help! Yes, my message was that it could be worse. He could flatly refuse to withdraw. I assume he is withdrawing because he has augmented on Pramipexole. That is so tough! I augmented on Pramipexole and it wasn’t pretty. He is actually doing what many of us on here recognize. RLS is Hell enough without having to worry about withdrawals. I respect him for trying; it takes an extremely strong person to do that!!
Others will be along shortly with concrete advice (withdrawal schedule, etc.)
I will start by saying he will need to withdraw very slowly. Going down by half is not working for him. What about taking a quarter dose and continue titrating down by quarters? Maybe have a 2 week break between titrations?
Thank you, he becomes triggered so easily I think that taking the time to help with will help our family unit, which will in turn be great for all of us even though we are now separated. On a side note he was also diagnosed with sarcoidosis 3 years ago, is there any connection you know of between the two? He became very unwell with a cough, skin lesions and swollen ankles. At first they though it was cancer of the lymph nodes, he started Rick Simpson oil and within 2-3 weeks after the next scan all the black masses on his x ray had disappeared, including the swelling and the cough. RS Oil does not however touch the side effects of this drug, which is rather scary in itself. he is on one to start tonight so I am super proud of him, and again, can not tell you how happy I am to have found this place! I look forward to the other members advice, but yours has been a great comfort, have you any direct links for the augmentation for this condition? xx
He is suffering severe Augmentation- if you put Augmentation in the search box above you’ll see loads of posts.
Also go to the main page of RLS UK website where there is a video on Augmentation.
Lots of people go through it every day- he is not alone and yes, you are right- Doctors are negligently prescribing way above the recommended dose because most have no idea how to treat RLS or how dangerous dopamine agonists like pramipexole can be.
Withdrawal is really difficult but possible.
Your ex will need help from his doctors- the vast majority of us will need strong painkillers like tramadol or OxyContin to take during withdrawal. It allows one or two hours sleep during the non stop hell of body jerks/spasms.
I took 50mg of Tramadol every 4 hours at night during my withdrawal and cannabis that my adult children obtained illegally for me.
Getting off pramipexole is more difficult than getting off heroin but doctors don’t realise this. He will need someone to support him during withdrawal and should plan 2 weeks off work for the worst period which is 10-14 days after last dose.
Reduce slowly- cutting pills in half every 7 days.
Really hot baths and leg massages help as well as compression socks.
The aggression/ tension is classic- the pramipexole winds you up like a tightly wound clock.
Suitable meds to replace pramipexole are alpha2delta ligands like pregabalin and Gabapentin or opioids like OxyContin or Targinact ( specifically licensed for RLS here in UK).
Do not let doctors give him another Dopamine agonist- ( Ropinirole/Levodopa/ Neupro patch) because once you have augmented on one, you will quickly augment on another.
Get bloods taken and ensure serum ferritin is above 100. You’ll be told serum ferritin is normal in UK if it’s above 15 but those with RLS need much higher levels. Raise by taking ferrous bisglycinate every other night ( Holland &Barrett sell it).
Magnesium Malate also helps some people but not during withdrawal.
Make sure he’s not taking any meds that worsen RLS like anti histamines ( including cough meds)or anti depressants.
Thank you, unfortunately he has lost all hope in doctors so I know that will not be a road he is willing to go down again, it will likely need to be natural so I will do some digging in that area, and I will watch the video on augmentation. The reduction sounds like a good place to start being 1/2 every 7 days, it will be a longer route to getting off them, I can hold the business until he is ready to get back to it. When you are off them, is that it or another few days/weeks of hell? thank you so much by the way, he is started iron today, waiting ro the doctors to check his ferritin level would be too long, with Brexit about to hit the waiting lists for "non important" bloods are rising. kind regards
The hell can last weeks unfortunately. Sometimes the RLS can level off for a few days after a dose reduction but then kick off again at the next dose reduction.
Go slowly and if your friend can cope without taking meds during withdrawal great- but be aware there will be days without any sleep and constant body jerks.
In UK you can buy Solpadeine Max at pharmacies which contains codeine- that may help a Little.
It will take 10-14 days after the last dose of pramipexole before the leg jerks settle down.
Your friend may be one of the lucky people who can control his RLS with natural remedies. So, if he can avoid meds after getting off pramipexole he will be able to see what his RLS is like. He may only get it a few times a week.
Diet has helped many on here so once through withdrawal he could keep a food diary and note triggers.
Thank you so much. I have just spoken to him and he says he can get to 2 with not too much of an issue but then when it starts tapering down form 2 is when the hell really begins, He thinks maybe 1/4's after 2 might be better than halves?
We actually have a mammoth load of cocodamol (solpadol) from an issue a few years ago, any thoughts how often he can take one? They are 30mg/500mg dispersible tablets. I know that these can also be addictive which is why I ask, as we don't then want an opioid addiction on hand. I am excited for him and worried at the same time as his will power levels aren't the highest, but I will be in his corner
I personally have noticed stress triggers RLS in him and a friend of mine who is not on meds, I think sadly bad diets contribute to many of the conditions we deal with these days, sleep, rest, food and stress.
I cannot find the augmentation video unless it is on the first page with the woman? which says :"stories"
This is the video Dr Early ( top US expert is talking).
Stress can definitely trigger RLS.
Solpadeine is addictive BUT as he will only be taking it for a week/ 2 weeks it really should not be a problem as long as he takes it every 4 hours at night during the worst of withdrawal.
I actually found that the only thing that helped me was the cannabis- I had never used it before and am not a smoker but it relaxed me and enabled vital sleep for an hour.
If you can cut the pramipexole pills into quarters then that is brilliant- do it.
I bought a pill cutter from Amazon which worked well with larger pills.
Let us know how he gets on and just let him know it is difficult and he will want to give in but once off pramipexole his life will be so much better.
Fantastic! I will keep you all up to date when the worst hits, I myself may need some where to come to and talk LOL as I am his main support unit. yes! have you ever looked into the pure oil form ,Rick Simpson oil? it really is amazing stuff, I wish that doctors were helping more people in there UK now we have "medical" cannabis, which is being given to about 1% in the whole country, its really not good enough. Oil is amazing, the tiniest amount works.
I’ve got hold of some illegal CBD oil with THC. I have MS & legal cannabis is supposed to be available to us but the MS Society have confirmed there isn’t a single person in the UK who has been given it. It’s outrageous. Anyway my expensive CBD oil definitely helps me sleep so I am less likely to be woken with the jumpy legs.
Wow! it just gets worse every-time I hear another story about it, I personally believe that they had to give us "something" so the legalised it for medical use to then string that out for goodness knows how long. I suggest you look at Rick Simpson oil, there are instructions on his website and so forth, its called Phoenix Tears, I am so glad that CBD helps you as well. xx
Smoking it won't, it also needs to be very specific in strains etc (sedating) and taken as oil - as a suppository in coconut oil or you get extremely high! I will look up what you suggested thank you.
All I will add is the need to wean slooooooooowly. Cutting it in half right off the bat is not the way to do it. It can take MONTHS to get off ANY dopamine med. The EXPERTS and RLS researchers give the advice, and I can back that up from my other groups, that opioid pain meds at a low dose will help the symptoms and the horrid feeling he is having, They LITERALLY compare dopamine withdrawal to withdrawal from cocaine, which is horrible. IF your friend can talk to his doc and talk to him about augmentation ,and there is no personal reason he cannot take a low dose opioid, like Tramadol (which is scheduled lower than any other pain med because it is a synthetic opioid) is literally the BEST way to do it. So, it depends on how he feels about that, and how the doc feels about that. But, really, after coaching hundreds of people since 1996 about augmentation, it is the best way. If he is not able to take opioids for whatever reason, then he can try another class of drugs used for RLS to see if it helps. The body and the brain LOVE dopamine, so it is s huge battle for MOST people.
Thank you, he has some high strength cocodamol which he is happy to use. Because of impending Brexit the lines are getting longer and longer so seeing a doctor about this could take at least 6 weeks if not longer for a non emergency and then he could be no closer so at this stage he is going to go from 3 pills to 2 by Saturday which is his somewhat comfortable level and then take 1/4's or halves every 7 days as suggested. We have both gone through issues with medications and doctors at this point has not all faith in western medicine but hopefully with me and the help of you fine people here, he will make it through the next few weeks
You have wonderful advice from people above. Read it a few times.
The most important bit is the word "SLOWLY" I can't emphasize this enough. The body has got used to a potent comforter over the years-- it is not going to give it up without a fight .
The interval between lowering is as important as the reduction amount. The body needs to get used to the new state of affairs, before shocking it again.
Think of a toddlers comfort cloth. You could take it away at one go ( I didn't think so!) Or cut little bits off it until it disintergrates and isn't noticed any more ( yep, that's better😪)
All I'm saying is " the slower the better and easier" it's entirely up to you to decide how hard or easy you wish to make. There is no easy way to do it.
Some people prefer quick and horrific, others- slow and less stress.
Just a quick comment- Augmentation and withdrawal are medical emergencies. UK Doctors need to realise how serious this is. If he needs opioids to help get him through then demand an emergency appointment. Print off the info from this site on Augmentation and go with him if needed.
I can honestly say MS is NOTHING compared to RLS.
This is an emergency- if your friend is having trouble at any point- don’t hesitate to go to A&E and get them to page the on call Neurologist.
when he was at the doctors all they suggested a few months ago now, was changing the drug he was on, they also said it wasn't addictive so knowing general practitioners as they are as much as I have become accustomed to, I don't think they will see it as an emergency especially since he called them up originally and said "I think I'm addicted to this medication and I need to see someone" and it was 6 weeks later The scary thing is its going to get a lot worse soon sadly.
Hi there , firstly like to day what a wonderful friend you are . As a sufferer of 30 years with a very supportive husband I can honestly say I would never have got through this without his support. It is vital! There are days when you feel you could throw yourself off a bridge and just having someone there who understands that is a lifesaver itself . I myself only found this forum a few months ago and the information is priceless. I've learned so much .my own personal experience since joining here Is quite reassuring....I was on a drug called citalopram for anxiety alongside my pramipexle . 4x 0.88 of P and 40 mg of C both at the maximum level . I had hern augmenting for a few years now snd was starting to get panic attacks that the P was now no longer working. There was days when I wanted to punch a hole in the door . Anyway I started to withdraw from the P over a 4 week period . I have now bern free of it for 2 weeks at the same time I started taking CBD tablets, magnesium and turmeric capsules (all Holland and barrett) I also took up a crafts hobby ... i CSN honestly hand on heart say that my symptoms have halved . I am getting a good nights sleep every night now . I know this will be temporary and I still have to wean off the Prpramipexle but I plan to get all the information from this group and find the most sympathetic doctor in my surgery before I make an appointment...because I aim to kick up stink with this information to get the help to come of these awful drugs . I had NO idea just how awful they were until I joined this forum.
My friends son has sarcoidosis, he is 30 years old, he also suffers from diabetes and addison's disease. I will mention that oil you spoke about to his mum (where di you get it ) ? If we could relieve one of his conditions it would be amazing . Good luck to your ex. I'm do glad he has you caring enough to get him some help x
That is amazing to hear and thank you for sharing your story with me I am sorry you have been living with that for so long! but I always find comfort in that you can turn your life around within having one single thought, which creates a different journey in your life. Its not good simply existing, living is the main goal!
The oil is not legal as such but in certain parts of the UK they just cant be bothered with the paperwork so I suggest looking up the oil from the website i suggested, I came upon it through someone who is no longer providing it, but if you search you can find it. Sorry I cant be more help in that department, it should be legal for us all by now! xx
I dont think there really is any help other than medication, its something that RLS sufferers have to accept. I had been on Ropinerole, for about 18 years or so, but came off them last year as i had gradually upped the dose to 16mg a day which was a horrendous amount, but it still wasnt working and i had to try something else. The symptoms of being on Ropinerole were not good including feeling sick a lot of the time. But the worse symptom was compulsive online gambling, online slots and bingo. I had to come off it, so went to the doctors who gave me over the next few months lots of different pills and none of them have worked. Coming off ropinerole was horrendous, just as bad as coming off illegal drugs I imagine. I was climbing the walls worse than ever before. I have seen a neurologist who was worse than a man off the street who knew nothing about RLS. He prescribed more pills. I wanted help not pills. I am going to see my doctor again to see what to do next
Thank you for sharing with me, I believe most anything can be treated without drugs myself, as I am living proof although being diagnosed with BPD, depression, m.e, fibromyalgia and so forth.... I take no medication, I drastically decreased my stress responses and changed my diet, made sure I got sleep when I felt tired as well as relaxation which is totally separate and equally important, and started exercise. If I ever need anything I turn to more of a holistic approach, kinsielology, reflexology etc .....
And it helps better and more than any little white pills and trust me, I have tried a lot LOL.
I occasionally get RLS symptoms when I feel anxiety and it is past my bed time, I also got RLS when I was pregnant so I know how terrible it can feel, gratefully not augmentation or dependancy on the drugs to deal with RLS however I was with my ex for 12 years and watched him go through it, and I can tell it is nothing to laugh about.
Good luck on your journey finding something which helps you, the medical industry over here are a bit of a joke in my house. xx
Thank you. My friend has fibromyalgia and since she started taking 3 x 100mg gabapentin her symptoms have almost completely gone! Whereas I am taking up to 6 x 400mg a day for RLS and I still have painin my legs and feet! I know from speaking to other people of all walks of life, with different conditions, that every one has a different tolerence level to pain, to drugs, to self help products and treatments. I have tried the dopamine diet with no success, cut out all things that couldt trigger the condition, with no success. Some people take half a mild sleeping tablet, and sleep well. I take 2 x 7.5mg zopiclone and dont sleep a wink!! So e people take night nurse and sleep all night. I just find this laughable because i could probably take the shole bottle and it wouldnt work!! It might make me sick though lol. I went for years without medication, because i didnt know you could take anything for it, i was not hardly sleeping for years and feeling groggy all day because of the RLS. I tried all the things that people suggest, but in the end my life was so bad that I started on the ropinerole. That first night i took it, I had no expectations of it working. None whatsoever. So when within one hour i was falling asleep and slept for about 6 hours it was amazing!!!! But of course over the years i had to keep upping it as does everyone else
Absolutely, one persons poison is another's medicine, I just think sometimes people curve round the important basics like stress reduction and opt for the easy route, which isn't necessarily "easy" because they are in SO much discomfort they want to get back to their lives and start living again, but really if more people dedicated themselves to the basic fundamentals for good health I honestly believe the populations illness and conditions were lessen dramatically.
Check out a lady called Lissa Rankin, she explains it all much better than me
I was on 1 mg of mirapex/pramipexole for more than 15 years, and once I read about augmentation, I knew I had to get off of it. I had a sharp increase in restless leg symptoms when I had eczema for the first time, and I made the mistake of taking hydroxyzine (an antihistamine, I think) which worked great to help the eczema, but wreaked havoc with RLS. When I got off the hydroxyzine after 3 months, the RLS never returned to normal. I didn't sleep much for months, which made work difficult, but I was able to shift work hours and barely manage. I cried a LOT. And felt desperate. And walked a lot every night. I'd sleep 4-6 hours one night per week, and the rest of the week was 1-3 hours. It was horrible. Now, I panic if I don't have the morphine time release that allows me to sleep somewhat normally, 6-7 hours. I am completely free of pramipexole, which took 4-6 weeks of halving and then quartering the tablets. There is life on the other side of all this, just very hard to get through. I had no help from any medicine to get through the worst time, glad he has something that will help.
Hi, So sorry to hear of his difficulties. I am also on the same meds that they started me on .88 x .5 for 3 days then .88 x 1 for 3 days and then .88 x2. I stopped at 1 a night because I was worried about augmentation. My goal is to get off it. So starting Monday, I will have quarterly iron infusions through the oncology department at my local hospital. As far as taking iron orally, it is imperative that it be taken with Vitamin C in order for it to be absorbed. Also if you can look into taking elemental iron (called Feramax in Canada and available as an over-the-counter supplement at the pharmacy) as it is also more bio available and help accelerate increasing iron stores ( that normally take months to register increased iron).
It does get better really.
Good luck to you friend, who is very lucky to have you in their corner.
Thank you very much and I wish you all the luck in the world in getting off the drug completely Getting down to 1 is half the journey really and you are already there
Luckily through my own conditions I am aware of co factors when it goes to supplements, for myself I had to go through countless iron supplements before I found the right one for me which is the Floravital liquid, the iron they give you at the doctors should be banned! lol. I have so many left over vitamins I was able to give him a full jar of bioavailable iron with vitamin c slow release, but as I know with my own iron journey, its trial and error.
I wish you and your ex well in the coming weeks. Having read your notes here and reading all the replies I too have found this very interesting and very helpful. I knew it was going to be difficult to withdraw as I have read so much on this site many times. I have been trying to withdraw from Pramipexole for a year now. I managed to drop from 2 x 0.88mcg per night to 1.75 tablets each night. Then in October last year I met with a balance Neurologist as I have damage to my inner ear which is giving me a lot of grief. He put me on Pregabalin 100 mg at night and wanted me to get off Pramipexole altogether, assuring me the Pregabalin would help my RLS, and it has. I have managed to get to 1.5 tablets per night but the withdrawal has not been pleasant. From what I have read on this site I think I am going the right way - slowly. I was withdrawing a quarter tablet every 2 weeks but I have been so ill the last 2 weeks, I have decided to try a quarter tablet once a month. So what you will have picked up from the posts here, SLOWLY is the only way to go. You and your friend are not alone and I thank you for taking the time to post us. I am sure I will be posting again in the future.
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The scary thing is its going to get a lot worse soon sadly. 
Week full of tests 😔
Please advise:What should I take for RLS after getting off Pramipexole and Ropinirole?
RLS specialist in Ireland
help for a friend
