If I decided to stop taking Praminexole, can anybody tell me what symptoms I can expect? take 3 or 4 X 0.88
Praminexole: If I decided to stop... - Restless Legs Syn...
Praminexole
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Hopeless100
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Oh- very nasty and sick.
Why not just taper down slowly by one pill a week and see how that goes.
You will suffer withdrawal symptoms going off the last one. Good idea to talk with your doctor concerning that particular situation- there are various strategies available depending on what he/she is prepared to prescribe.
What do you propose to do when you go off the Prami?
Actually- the correct question is , why do you want to get off it in the first place?
Good luck .
Thank you your the reply,
One of the effects is very vivid dreaming, disturbing, so real. I would prefer to start another RLS drug that doesn't do that, also Doctors now take weeks to get an appointment.
So I take 0.088 mg tablets, between 2 and 4 each evening, from about 4 pm to about 10pm. that seems to stop the RLS. I have RL,S PLMS and some other limb movements from having the P. Could you describe the possible withdrawal symptoms in detail? what can I expect?
I have tried several other RLS drugs before and moved to P a couple of years ago, .88 seems a small dose. so I could only drop it by one tablet, =30% or so each time. the movements would re-start earlier in the morning.. not good.
At present, taking P. but the dreaming, when asleep, is weird and disturbing. -it is getting harder to tell the difference. There may be other effects I don't recognize but may be happening, and would want to find out what they are, by their absence, or are they permanent?
Any detailed info of what to expect would help.
If you are taking more Prami for the same effect-'then you are suffering "augmentation"- check it out on line.
Withdrawal is being sick out of sorts shivery diarrhea ill and miserable. Not nice.
Wierd dreams will be the least of your concerns.
No medication for rls comes without side effects- different for everyone.
You will need to have your alternative lined up and maybe using it before you finish off with the Prami. Gabapentin is often used for this. Opiates are in order if your withdrawal is severe.
Cheers.
Withdrawal is going to hell for an extented period. You need another RLS med to help you through your withdrawal.
Your withdrawal will be like your current RLS X 10. Consider continuing using current med as your dreams should deminsh. Getting off your med is no cakewalk although sooner or later you will experience augmentation. It's not easy eather way. Been there.
I have some Zapain 30mg/500mg codeine/paracetamol. some clonzepam, expired date, some Diastat diazepam rectal , aspirins and over the counter paracetamol and a small amount of prescription morphine that is also expired date. Not sufficient I think to get off Parmipexole. Probably take several weeks.
I was hoping for no withdrawal effects. Yes I know about augmentation. Instead I will continue for a bit longer for now and try again when there is an alternative ready.
The dreams are not pleasant, and I sometimes wake up in them and they go on for several seconds before I wake up properly. The mind is very strange.
I dont know of anyone who hasnt experienced any withdrawals when coming off a dopamine med. the dopamine receptors have got used to extra dopamine and when that is taken away they object, hence you get withdrawals., your RLS becomes worse from less dopamine until it gets used to not having all that extra. Weaning down slowly is the best way to do it, and even though those 0.088mgs are tiny pills you can cut them in half. The other limb movements could be because you are suffer with augmentation, so are you saying its not just your legs but your arms aswell..? Most people have to take Tramadol to help with the withdrawals.
Hi...
I have gone cold turkey about 8 months ago. I was taking one every night. I gone through hell for nearly 2 weeks but it was worth it. I would second everyone here and taper down slowly as you are taking 3/4 every night. Your withdrawal will be worse I believe.. I couldn’t sleep first 4 days.. I was so grumpy and miserable... but I stuck to it and never looked back! Read my posts please. It says how it was for me in details. 
Hope you get better withdrawal symptoms than I predicted though.
Good luck.
B
I have a suspicion that the longer you are on the pramipexole the worse the withdrawal process. I may be completely wrong about that.
Hi there. I am on Pram as well. 5 tabs taken in 3 then 2. First at 4 pm then at about 7.
I suffer augmentation I know I do but too frightened to get off them and try something else. On a good night I get to sleep easily but wake very early (it’s 4.30 am this morning I got up) but on a bad night I can get very little sleep.
I twitch and convulse in my entire body and feel physically sick when it is really bad. I suspect that you would go through the same or worse if you stopped the tablets.
I want to ditch them for something else but sometimes the status quo is easier than the alternative. I would be really interested to know how you get o.
Withdrawal from a DA is really hard. You experience severe RLS all over your body most of the day for around 4/5 days during the last stage with little or no sleep.
You would need to take time off work if still working. The sleep deprivation is unpleasant and it takes about 2 to 3 weeks after the last dose to start feeling normal again. That’s why opioids are essential during the withdrawal period. They dampen down the worst of the twitches and let you get one or two hours sleep.
Lots of people have managed to go through it - it’s hard but you can do it.
You would need to start taking new meds to replace the dopamine agonists- pregabalin or Gabapentin or an opioid like tramadol or OxyContin.
If you do decide to stop the pramipexole, do it slowly and ask your GP for help. If GP is on side, it will make things a lot easier. You could ask for a sleeping pill like zolpidem to help get a little sleep while your body adjusts to the new meds.
Hope it goes well.
I was taking pramipexole for 7 years, 2 a day, but suddenly stopped working so my doctor put me straight on Neupro , I don't know why I didn't have to ween off them first? But I was fine. The patches are working for me, been on them about 6 months now!
in reply to Paulamaria
If the pramipexole just stopped working and you did not augment, then you can just switch to another dopamine med. When someone augments then changing to another dopamine med will only mean you will augment on that med too.
I stopped taking Pramipexole (after about 17 years!) about 4 weeks ago. The first few weeks were awful - almost no sleep and very bad symptoms - just standing about wasn't any good, I had to walk fast all night. I eventually managed to persuade the dr, to give me some tamazepam and I take one every other day and they enable me to sleep. The days I don't take them are mixed - sometimes quite bad but not as bad as the first few weeks, and some nights I actually sleep for a few hours. I do feel better so some reason though, for not taking those pramipexole any more. i'm not sure what will happen next as the dr. would only give me 14 pills so enough for 28 days - I plan to see a RLS specialist although don't know what the hell he can do - I think this forum is wonderful as everyone here has so much experience and between us we probably know twice as much as any dr who hasn't suffered with it.
good luck! and remember, you're not alone.
in reply to Lenilatt
You need to see your doctor before those sleep meds run out, cause your RLS is still there and will be until a cure is found, so you need to be taking something while waiting to see the neuro, which could take weeks or months. Some people try Gabapentin and another med along side it like a low dose of a opiate, which can be codeine.
I’ve yet again been trying to whittle down my Pramipexole .18 tab. I’ve hacked off about one sixteenth so far. I feel more alive as a result but supplement the DA with Gabapentin, codeine, Tramadol, cannabis, Kratom and whisky. (Not all at once.) And what I hope will turn out to be the best supplement to medication of all - retirement. Fingers knotted.
My dopamine receptors however hate what I’m doing.
Hi came off this nasty drug earlier this year it was one of the hardest things ive ever done in my life but now well worth it please read my posts over the last year to see the struggle i went through and the relief i have at the moment and the help i received from here.To all of you I wish you all a HAPPY NEW YEAR and fingers crossed a restfull one
Happy new year to you too, nick. Can I ask what dose of codeine you are taking and of pregabalin? How long were you taking the pregabalin before it started to be effective? Also, do you experience side effects from it?
two 50mg pregabalin early afternoon and two 30mg around 8/9 o,clock at night and up till now no side affects have some bad nights but few and far between
Thanks for that, Nick. Sorry to plague you but am struggling with my treatments at the moment and trying to add in pregabalin. Want to give it every chance. My GP will prescribe whatever I ask but has no experience treating Rls and nothing to offer in terms of advice for how to take. Thus am v grateful for your observations.
Why do you split the dose? Is there any reason why you take the larger dose in the afternoon?
My Rls only presents badly at night (for which I am hugely grateful) so I have been taking the whole dose (am titrating up and am now at 150mg) about an hour before bedtime. I then get an awful restless feeling in my torso - very similar to Rls but I think it’s the pregabalin as Rls was largely confined to legs before I started it. Am hoping it will gradually subside as I get used to the drug. Did you get anything like that?
Hi i changed doctors as old one had no idea about RLS and was augmenting real bad.Once i seen new doctor she understood what i was going through and said she had a good amount of success with pregabalin for RLS and it was up to me when i took them just play with the timing etc because i was taking codeine phosphate for back pain at night i choose to take around 2/3 o,clock and codeine at around 9ish and with more luck than judgement it worked still have bad days in and out but all in all i,m in a good place at one time i did,nt think i was going to get through the dark tunnel i was in good luck give it a try we all know what works for one dos,nt always work for another its a matter of try it and see there,s great people on here that will see you through most things i took there knowledge to my new GP she was also impressed with the knowledge in front of me all the best
Hi Nick, yes those who are augmenting should read all your posts and the comments, you were and still are our star, who went through hell but came out the otherside intact. x
nick-the-turk in reply to
with your help i did and forever thankful x
Do you livening n the US?
Hi Nererquiting, I live in the UK
How are you doing? If you still need, I can download and send you info via email or FB messenger. I am traveling home ( thank God!) so it won’t be till tomorrow but happy to offer any support I can. My FB is Karla Curran in everett Washington. Hang in there and never lose hope, it’s all we have!
Hello Neverquiting, thank you for information so far, I am having to continue with paripexole at the moment, as I dont' have anything else to cover if it got bad cutting down. What reasons would you give for trying not have to use paramipexole?
As mentioned before on here, it is important to understand augmentation. My dr gave me very specific directions and Inwish inwouldve followed them closer because dragging it out wasn’t helpful in the end. He is one of the top dr in the the IS and spends a majority of his time getting people of of the dopamine agonists. Why? Because even the makers of the drug state it’s made for short term (3 months). I was on it for 9 years. He reasoned that there is a risked of getting hooked on other stuff while withdrawing for the DA but I’m not sold. I do know for me that nothing worked against the horrible withdrawal symptoms until It was all out of my system. I’ve seen people use the opioids to get thru but those are the most addictive and then you just have to go through another series of withdrawal. I used to reduce my ridiculously high dose by take minerals but Inwould encourage you to bite the bullet, know you MAY have a bad two weeks and get off the DA! The drug changed who I am now and so many others. I will try to cut and past an article about augmentation. Try to get any and all RLS triggers out of your system, that may help. Let me see if I can get some other files for you too.
US not IS sorry it’s early
AUGMENTATION
You would think that having RLS was enough of a curse to live with. The agony, the sleepless nights, and the social isolation are all things that make RLS a life-altering condition. How can it get any worse? The answer is a condition called augmentation.
Augmentation refers to a condition where the medications you are taking FOR RLS begin to make your RLS symptoms worse. When you have begun to go through this, you will notice that your RLS sensations will seem to move to other parts of the body, most notably but not limited to the arms and torso. The agonizing sensations will increase in intensity and will begin to occur earlier in the day, in the worse cases 24/7. Sleep can be reduced to an hour or two to even NO sleep for long periods of time. When augmentation is allowed to continue, you will develop a feeling of hopelessness, as RLS will be in total control of your life.
Much like the disease itself, the way augmentation occurs is not known. Compounding the problem is that it seems that very few doctors even know that augmentation occurs and often simply believe, like the patient, that the RLS symptoms are simply “getting worse” when in fact they aren’t on their own.
What is known is that it is a condition that is brought on by certain medications used to treat RLS, mostly those belonging to the dopaminergic class of drugs including Sinemet, and the Dopamine Agonists Requip, Mirapex, and Neupro. GABA drugs like Neurontin (gabapentin), Horizant, and Lyrica have shown augmentation in studies in a few cases but are not considered to carry a significant risk. All generic forms of these medications cause it as well. Opioids are not believed to contribute to any form of augmentation.
Augmentation does not go away, and increasing the dosage of your medications or adding other medications, both common practices, only “feed the disease” and make RLS worse. Augmentation is SO SERIOUS that there is actually a protocol to treat it, and the ONLY way to stop it is to discontinue all RLS drugs for a period of 2-4 weeks, assess what your true baseline RLS symptoms are, and begin new treatment using non-dopaminergic drugs. Unfortunately, many people are psychologically attached to their RLS medications and will not do this, spiraling into “RLS HELL” of worse symptoms and more drugs. As someone who’s been through it, I can tell you that it IS worth going through this withdrawal, as you will find your base RLS to be very treatable using other forms of medication. Life can be good again.
This instruction guide was spot on as far as what I went through. It terrified me to read it but I used it as support as I went off the pram.
From Dr Earley: John Hopkins Sleep Center
Drug-Tapering Period
You should slowly taper down on your RLS medication(s) as instructed. Unlike the 10-night, drug-free period, which will follow, the withdrawal period is highly variable and unpredictable. Each time you decrease your RLS medication, you will experience some degree of withdrawal symptoms (i.e., worsening RLS symptoms). These symptoms could be mild, moderate or severe—especially for the first two nights after each drop in the dose of medication. Each decrease in dose can be a different experience than the previous dose decrease. However, the most severe symptoms will be experienced when you finally stop the last dose of the RLS medication and begin the 10-night drug-free period.
What to expect when the drug is finally stopped (The 10-night, drug-free period)
When you finally stop the medication, you will need to be drug-free for 10 full days/nights. During this 10-day/night, drug-free period, you will experience horrendous, severe rebound of your restless leg syndrome symptoms. You need to be very cautious when walking at night and DO NOT attempt to drive during the first 4 days of this withdrawal period because of the severe sleep loss.
Day 1-2 (first 48 hours): It is guaranteed that for the first 48 hours, you will get absolutely no sleep. During the first 48 hours, the intensity of the symptoms will be at the maximum and will most likely involve the upper extremities and trunk of the body as well as the legs. The intensity of the symptoms will likely be more severe than you had ever experienced before. Walking continuously will give you the only relief because when you try to rest or even stand still, the symptoms will immediately return with the same intensity. Make sure that the walking space is clear and reasonably well lighted. There should be no effort to work or to drive during this period. Some patients may be prone to developing depression or anxiety at this stage of withdrawal.
Day 3-4 (second 48 hours): During this time, the intensity of the symptoms will only be slightly less severe than the previous 48 hours. This second 48-hour period is the most difficult because you will not have had any sleep for the preceding 48 hours. Some people will find that they are stumbling when they are walking, so be very careful where you walk. Some people will actually have a brief burst of dreaming with their eyes open and thus experience hallucinations. Make sure that the walking space is clear and reasonably well lighted. There should be no effort to work or to drive during this period. You are likely to get only 1-2 hours of sleep, usually occurring in the earlier part of the morning. Day 3-4 is the most critical period, as it is the time when most people give up. Some patients who experience depression or anxiety as part of the withdrawal will report an increase in these symptoms. Getting through to the morning of Day 5 is critical, if you wish to get off of this drug.
Days 5-7: During this period, the intensity of the symptoms will start to abate. You should begin to appreciate fewer problems of symptoms in the upper extremities and a reduction in symptoms in the earlier part of the day and afternoon. You can expect to get 2-3 hours of sleep, although the sleep will likely be fragmented. Daytime alertness will have improved, and returning to driving and to work is usually not a problem for the majority of patients; but be prudent in your decision about driving. A few patients may still continue to have a sense of depression or anxiety.
Days 8-10: During this period, most people appreciate that there is a significant lifting of the disease severity in terms of its intensity, body distribution, and effects on sleep. Symptoms will usually regress back to an evening or bedtime problem. The severe intensity of the sensation, which was experienced during the first 4 days, will have significantly subsided. You can expect to get four or more hours of sleep with about 2 to 3 hours of concentrated sleep. Your level of alertness, despite the sleep loss during this time, should be back to baseline. If it is not, then other sleep-related issues may still be present. For most patients, the earlier problems with depression and anxiety have started to abate.
DAY 11: After 10 nights without medication, you should contact me. I will review your current status as far as your symptom severity and duration and will begin an alternative treatment, if necessary.
Gulp!, doesn't sound nice at all. postponed attempt for now, but I plan to have a stash of something to take while withdrawing .The odd bits I have are not enough to do it.
in reply to Hopeless100
Dr Early's way is his way he deals with people with augmentation. I know a few people who have done it his way. BUT, most on this forum and other groups i belong to have withdrawn from their DA by weaning down very slowly and taking a strong pain med. Its less painful by weaning down slowly and taking a pain med.
When you’re ready you can do it! I literally had to convince myself I would die from no sleep and more importantly had to have someone committed to being there for me at night when I thought I wanted to. Damn rls.
Your withdrawal may be bad to horrible but I strongly urge you to get off. If your in the US look up RLS SUCKS. Lots of info and incredible support!
Lots of info and incredible support on here too for people who are going through augmentation. Lots of people have taken advise and support from members on here and have got through the withdrawals from Pramipexole AND Ropinerole. Some didnt even know about augmentation til they joined the forum.
Gosh, many thanks for all the replies.
I also take codeine for back pain, and this could help when reducing the Pramipexole. I have the Nytol one-a-night tablets which I use very occasionally, so they will work when I cannot sleep for several nights in. a row.
The RLS is the type where I 'have to move". just 'have to move", -have to move, and so on, and on, and on. The PLMD is electric shocks that make me jump. The augmentation is having to gyrate my arms and neck. All three is a long, long night.
If the Pramipexole stops movement, and I sleep. (3 or 4 tablets now), there are very strange vivid dreams which I seem to be somewhat aware of what is going on. creepy. The personalty changes are from this. I would prefer to try another RLS drug.
Done ropinerole , amitriptyline, cemetidine and several others before.
in reply to Hopeless100
The Nytol has a ingredient that can make RLS worse for most of us, Diphenhydramine. If that doesnt make yours worse then you are lucky.
I seem to be lucky with the Nytol, I also have 30Mg codeine/ 500mg paracetamol x 6 a day for back pain. Has anyone tried diazepam for Muscle spasams, PLMD or RLS ?
So far so good, I have managed to reduced the P. by 25% and no serious symptoms so far, it starts earlier in the evening and returns earlier in the morning, Kicking about before I get up. I can increase the opiates if there are other side effects.
Neverquitting responded to Praminexole pt reduce the P. by about 25% and no serious symptoms so far.
Gave up trying to get off the Pramipexole.
Still taking the Pramipexole, 2X 0.88mg in early evening and then another 2 , 2 hrs before bed. RLS returns in the morning.
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