Quitting Pramipexole: Has anybody... - Restless Legs Syn...

Restless Legs Syndrome

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Quitting Pramipexole

RestlessRR
RestlessRR

Has anybody successfully quit Pramipexole after being hooked to it for years? How?

When I started Pramipexole (Mirapex) in 2011, with 0.125mg a day, I guess nobody knew yet about this Augmentation shit, and my doctor told me to just increase the dosage if the current dosage doesn't work anymore. Now I'm already taking 3mg a day, and it still doesn't work. My doctor tried prescribing Gabapentin to hopefully replace the Pramipexole gradually, to no avail. Same story with Pregabalin.

29 Replies
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3mgs of Pramipex is sheer mismanagement. No wonder you're having that much trouble. I struggle at the lowest dose. I'm sure others will chime in soon with suggestions.

The key is to reduce pramipex very very slowly and with the help of opioids. Gabapentin and Pregabalin are not going to be fully effective, if at all, unless you're completely pramipex free. Many people have quit pramipex and are able to lead a quality life. It is not easy. I have failed thrice in my attempts to get off them but I lack my doctor's support. It should be though that as you reduce pramipex slowly, your legs improve slightly.

Also, please look into your iron levels. They can be very effective for some.

Good luck!

Thanks!

Many have managed to get off pramipexole and ropinirole but it is very, very difficult for the vast majority and you will need your doctor's support.

Any doctor prescribing 3mg of pramipexole for RLS is grossly negligent and doesn't know the first thing about RLS so perhaps change your doctor or ask for a referral to a neurologist or sleep centre.

You will have to take it very, very slowly over a year. With every dose reduction the RLS will flare up and become worse but should then settle. The 10-14 days after you drop the last dose are the worst and you will get no sleep at all for 3-4 days and constant twitching - so you need to schedule that stage and take time off work and ensure someone ( friends, family) can stay up with you. Opioids like tramadol & oxycontin will help and cannabis if you can get hold of it.

I know of only 2 people who have not had a difficult withdrawal but I don't think they were on such a negligently high dose and they were not on the drug for as many years as you.

If you are in the USA, you should try to see an expert who will prescribe methadone or Buprenorphine as they really reduce withdrawal symptoms and are the safest opioid treatment for RLS. Unfortunately, if you are in the UK, experts are around 10 years behind the US experts on the latest treatments and you won't be able to get either drug.

Manerva
Manerva in reply to Joolsg

Do you have the link or reference for the information on withdrawing over no less than 3 months?

Joolsg
Joolsg in reply to Manerva

It was in a webinar broadcast by rls.org Dr Winkleman stated that withdrawal should be undertaken slowly, minimum 3 months. I can access it because I am a member so can log into the site but non members are unable to see it.

I’ll see if he has made those statements in any articles. Dr Winkleman is based at the Massachusetts General Hospital in Boston.

Manerva
Manerva in reply to Joolsg

OK, thanks

Joolsg
Joolsg in reply to Manerva

I’ve emailed Dr Winkleman’s assistant to find out if the advice he gave on the withdrawal time scale ( minimum 3 months, up to a year) is contained in an article I can copy and paste. Hopefully he’ll get back to me soon.

Manerva
Manerva in reply to Joolsg

That would be great, thanks for doing that.

RestlessRR
RestlessRR in reply to Joolsg

Thanks!

LanaCSR
LanaCSR in reply to Joolsg

Unfortunately, buprenorphine won't be of much help for withdrawing from pramipexole because I take buprenorphine and it barely touches my RLS and I am not withdrawing from any meds. It just isn't very strong at all. RestlessRR would do better with oxycodone or something strong like that. Methadone as you suggest would probably help, too. I had to withdraw from tramadol while I was taking buprenorphine, and I suffered from withdrawal and was miserable until I was given oxycodone to help me through that time. I just want RestlessRR to have the best help during such a difficult time. 🙂

RestlessRR
RestlessRR in reply to LanaCSR

Thanks, LanaCSR

Joolsg
Joolsg in reply to LanaCSR

Thanks Lana, that’s very helpful. I have no experience of either buprenorphine or Methadone (I’m in the UK). I am relaying info obtained from Shumbah & several other members who stated Buprenorphine not only helped with withdrawal from dopamine agonists but also completely resolved their RLS.

It really is the case that we are all different and what works for one of us may not help others.

Thanks again,

Jools

LanaCSR
LanaCSR in reply to Joolsg

I also know because I used to treat with a pain management physician that buprenorphine is not near as strong as oxycodone and other opioids and, therefore, not as effective. And I know when I was withdrawing from tramadol I was grateful to have oxycodone to help me through the process. I just didn't want RestlessRR to be misled thinking that buprenorphine is all that would be needed to get through the withdrawal. But you are definitely correct that we are all different. I am just volunteering what I have learned both from the experts and from my own experience. We are very lucky to have this forum to come and share our experiences and questions. ❤

Hi, sorry to hear you're suffering augmentation. I agree with you on the "s" word.

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Augmentation was known about in the 1990s, despite this there still seem to be a signficant proportion of health professionals who have never heard of it and many prescribers still prescribing dopamine agonists for RLS. I can appreciate, therefore, your frusration.

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YES, it is possible to withdraw from pramipexole, I have, but many people say it isn't easy.

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I wonder if you have signs of also suffering an Impulse Control Disorder (ICD) as a result of taking pramipexole. This is significant because although this is less common than augmentation, people who have developed an ICD have more difficulty withdrawing from a dopamine agonist (DA).

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Several things can help the process of withdrawal.

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One : ask for blood tests for iron deficiency. This includes serum iron, transferrin, ferritin and haemoglobin. If haemoglobin is low, hence iron deficiency anaemia, this should be treated.

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Even of haemoglobin is normal, but the ferritin result is less than 100ug/L then it will help to raise this. This can be done by taking an oral iron supplement. "Gentle iron" is popular for doing this as it causes less gasttrointestinal problems. There is some research that suggests that the best way to take a daily iron supplement is to take a double dose every two days (NOT every day). It should also be taken 30mins before or 2 hours after eating and swallowed with a glass of orange. These measures help the iron to be absorbed better.

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Fair warning : you may read posts on here saying that someone takes iron and finds symptomatic relief in a few days, ior even the same day. This is highly unlikely, it may take months to ncrease ferritin to 100ug/L

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You don't have to have a blood test to take iron and you don;t need a prescfiption to buy it.

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IN addition, since the correction if any deficiencies in maganesium, vitamin B12 and D can improve RLS, taking supplements in these can dk no harm. Again, not a short term solution.

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Two : identify and eliminate, if possible any aggravating factors which might be making your RLS worse.

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If you're taking any other medications for anything else, these could be making your RLS worse. There is a long list. Stopping these or switching tlo an alternative can make a VERY significant difference.

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What you eat and drink can affect RLS. Alcohol, added sugar and anything with refined carbohdyrates or monsaccharides in it can have bkth shirt and long term effects on RSL.

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In addition, since inflammation is a factor in RLS anhything you ingest that causes chronic inflammation can nake RLS worse. This includes carbohydrates (as above) and possibly oxalates, gluten or lactose. An aitinflammatiory diet is advisable.

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These are NOT short term measures, (days or weeks) but longer term - months.

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Overall, pramipexole withdrawal is not a short term process and based in the dose you say you're currently taking, I'm afraid a successful withdrawl will possibly take over a year.

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Firstly, it would help if you could find a doctor who is more responsible and/or competent. mg pramipexole is FOUR TIMES the maximum dose for RLS. My opinion is that any doctor that has prescribed this and has consequently contributed to your augmentation, is guilty of medical negligence.

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I'm not sure whether there's any point to pursuing this legally, but at least perhaps you should consult another doctor or challenge this doctor about their errors. Consulting a neurologist may be a better option.

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There are differing opinions on the use of gabapentin or pregabalin to help with pramipexole withdrawal. Some say it cannot help until you've completely stopped the pramipexole. This isn't entirely true. It is true perhaps that you might not really know if it's going to work for you until you've entirely stopped the DA. This is because a) as long as you are still taking the DA, there may still be an element of augmentation and b) when you're withdrawing from the DA, you will have withdrawal symptoms.

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However,

a) some people take BOTH a DA and a gaba. and find this better than taking just a DA.

b) you might not recognise immediate relief with a gaba if you're still suffering augmentation

c) people often give the gabas insufficient chance to work.

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Not knowing what you've ready tried, based on what I've read and personally experienced, I suggest the following

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start taking gabapentin before reducing the DA, or at the same time, and build up the dose to at least either 900mg gabapentin or 150mg pregabalin. You can split the dose of gabapentin e.g. 600mg 2-3 hours before bedtime and 300mg 2-3 hours before that. Pregabalin is one dose 2-3 hours before bedtime.

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even if the gaba is going to help, it will be at least 3-4 weeks on this minimum effective dose before this can be expected to happen.

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Any side effects you expereince i.e. drowsiness, dizziness and stumbling when walking, should fade within3-4 weeks.

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Even if the gaba doesn't appear to be working, but side effects are not unbearable CONTINUE taking the gaba.

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Reducing the DA creates a dilemma. Some people elect to reduce the dose quite fast as this significantly reduces the time taken to withdraw, but increases withdrawals. Some people elect to reduce the dose lsowly as this significantly reduces withdrawals but increases the time taken to withdraw. Ankither forum member has recently reported that there is evidence that the withdrawal should be at least three months and a year would be better.

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Another factor is that you will find it easier to reduce the dose when doses are high, but the lower the dose gets, the harder it becomes to reduce any further.

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Hence you may find it's a matter of trial and error how fast you reduce and the speed of reduction may have to be slowed down as the dose gets lower.

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You may find that at your current level of dose, 3mg you might get away with reducing in steps of of 0.25mg or even 0.5 mg. Withdrawal symptoms will occur and you can wait until these settle down again OR wait up to 3-4 weeks on that dose before making the next cut. I read of some people giving uop on withdrawal in that 3 weeks or resorting to taking "a little bit extra" - neither of these is useful if you're determined to beat this!

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I don't have any exerience at the dose you're currently taking, but if you can manage cutting in steps of 0.25 mg when you get down to about 1.5 - 1mg you may have to start reducing in steps of 0.125mg (if not before). When you get down to about 0.75mg you may have to start reducing in steps of 0.0625mg (half a tablet) and later, even a quarter of a tablet.

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If withdrawal effects are unbearable, it will help if you can obtain a prescfiption for an opiate, any but possibly tramadol or at least codeine.. If you can't a paracetamol and codeine combination may help.

I personally don't advise it, but some members of this forum say they use kratom for their RLS. Cannabis can also be of assistance especially with sleep.

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If your insomnia is severe, then a sleeping medication may help e.g. clonazepam or zopliclone.

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I successfuly withdrew from taking 0.75mg pramipexole which is the official maximum dose here in the UK. Luckily no primary care doctor or neurologist I saw ever suggested increasing the dose, because in my ignorance I would have done. No neurologist I saw ever mentioned augmentation even when, as I now realsie, I was suffering from it. When I mentioned augmentation to a primary doctor, she said, "what's that".

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I started taking 900mg gabapentin for nerve pain caused by spinal compression of a nerve. Before that I was being prescribed amitriptyline for nerve pain, which I now know makes RLS worse. I had no idea gabapentin could be used for RLS and nobody told me. I took it for several months and didn't notice any effect on my RLS at all. I then started reducing the pramipexole by 0.0625mg every 4 weeks.

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As the dose got lower, augmentation symptoms started to reduce.

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When I got down to about 0.375mg sleep increased from 2-3 hours a night to about 5-6 hours.

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It took me about ten months to stop altogether and for the last year I have taken gabapentin only which I will continue for my nerve pain. I only occasionally have RLS symptoms and sleep well.

Sorry about all the typos, I hope you understand, my hand goes faster than my brain or vice versa!

RestlessRR
RestlessRR in reply to Manerva

Thanks!

You may find this link informative

ncbi.nlm.nih.gov/pmc/articl...

RestlessRR
RestlessRR in reply to Manerva

Thanks!

Hi RestlessRR. Whilst I was not taking prami, I was taking another DA called ropinirole. Like you, I was taking a very high dose.

It has taken me nearly a year to stop the ropinirole. It was very hard, but I have got through it. My GP was initially resistant, but after blood, sweat and lots of tears on my part, I got him to listen to me. I was referred to a sleep clinic and after a promising start, lockdown happened and I haven't returned to the clinic for any follow up appointment since. Because of this, my GP has helped and been supportive. I was initially prescribed codeine to help me through the withdrawals but ultimately ended up on 10/15mgs of oxycocin (targinact) which is a strong opioid to help me deal with the "business end" of withdrawal. At the same time I was also taking 200mgs of pregabalin but I'm not sure whether the pregabalin was of much help during the withdrawal. It might have helped.

I have now been ropinirole free for 2 months. I am pleased to say that things are improving from week to week. My daytime symptoms are much better. My evening symptoms have calmed down somewhat. My current meds are helping my symptoms around 70% of the time and I'm actually sleeping around 6 hours a night about 4 nights a week. I'm keeping my fingers crossed that thing will continue to improve.

There is life at the end of the dopamine agonist tunnel. It is worth all the blood, sweat and tears!

I would urge you to read some posts about withdrawal on this forum. Whilst there are common associated symptoms, each person's experiences are different. For me, it was tough both mentally and physically, but I did get through it.

I wish you success, should you choose to go down this route.

Thanks! may I know what's your current medz now? Is it the Oxycocin?

I'm currently taking 200mgs of pregabalin, 10mgs of oxytocin and 50mgs of tramadol, 2/3 hours before I go to bed. I'm hoping to reduce the opioids once my body has adjusted back to baseline levels. I believe this could take a while longer because of the high dosage and length of time being on ropinirole.

My RLS is hereditary. I've had it for over 30 years. I've accepted that it will never go away and that I'll need to take medication to help me.

I envy those who can get by with little or no medication. Unfortunately there are some of us who can't do that.

I was on pramipexole for 15 years, (having had RLS since childhood). the last 5 years or so of this it was wasn't much help and seemed to be getting worse. I didn't know about augmentation then and neither did my doctor, who could only recommend increasing the dose. After finding this forum, I decided to stop taking it and see what happened. this was about 3 years ago. I took about 10 days gradually reducing the dose and then stopped. I had an awful 3 weeks, with almost no sleep at all and was desperate. Then gradually, it began to get a bit better - I had decided not to take any other drugs to replace Pramipexole. I did try Kratom for a while, taking it only once or twice or week but after about 6 months, I had to increase the dose and so decided to stop that too. I seem to get used to drugs very quickly so they end up not working.

I still get RLS but generally sleep a lot better than I did previously - I usually have to get up in the night to walk about for an hour or so, but then go back to sleep so now I average about 5 -6 hours sleep a night, which is a huge improvement and I don't take any drugs at all.

So many on this forum seem to take so many drugs but they don't seem to do that much good. I expect I will live to regret this post and start to have sleepless nights again! You can never tell with this ridiculous disease.

good luck whatever you do.

Heatherlss
Heatherlss in reply to Lenilatt

Did you get your iron levels sorted before you went off DA ? How did you get by those 3 weeks without any medication ?

I can't sit even with Tramadol when I am off DA for a month. Just goes to show how different we all are. :(

Lenilatt
Lenilatt in reply to Heatherlss

No I didn't - taking excess iron upsets my stomach too much, I had tried various types and it's always the same. I do find eating red meat helps and I do this 2 - 3 times a week. I had the same problem years ago when I was anaemic and my dr. recommend red meat as the iron supplements didn't seem to help, and I found that did make a difference. Those 3 weeks were hell, I was sleeping one or two hours at best, and walking fast round and round the house all night (it was mid winter). but I knew (well, hoped). that it would not last forever, whereas being on the praxis and still not sleeping, would last forever.

Tried recently but developed DAWS and simply could not cope with the awful spiralling depression I when tapered lower than just a little less than half a tablet, (when reducing from one and a half.25 tablets ). Currently on 10/5 targin and slightly more than half of one .25 tablet and depression lifting/feeling more like myself now. RLS is a debilitating awful disease 😩

RestlessRR
RestlessRR in reply to 607516

Thanks!

Hi

I have just started the journey to stop pramipexole, with the help and advice I have received on this site, I have decided to try and be drug free, I am going for 3 months to be pramipexole free reducing very slow, luckily I was on a lower prescription but was suffering augmentation, I was also taking Prozac which I was unaware was not helping my RLS, stopped taking 1 month ago fingers crossed ok so far.

I will update again, not looking forward to what will happen but hopefully long term I will be able to manage my RLS drug free.

Not manage to have my iron levels checked as can’t manage to make a doctor’s appointment due the current situation, thinking of have a private online test done, not sure if anyone else has try this, if so could you recommend a company ?

Good luck

RestlessRR
RestlessRR in reply to Pupski

Thanks! Good luck to us.

I was on 0,13 mg Pramipexol (0,044+0,088) and 25mg Pregabalin during the last months. I wanted to stop Pregabalin because of gum problems and the Pramipexol (after 10 years) lead to Rls in the afternoon and evening.

For 4 days I have now been taking Buprenorphine (Temgesic in Austria 0,2 mg sublingual and only half of it = 0,1mg) . I stopped the 25 mg Pregabalin cold turkey (no side effects). And I am cutting away little bits of the Prami with a knife.

So far my nights were very fine ( no rls at all). All due to the Buprenorphin. Hope it lasts.

I wrote all this to Dr. B. He approved.

I cannot understand why it is not possible to get Bupr. prescribed in the UK. I am quite advanced in years, no history of opioids, but heavy Rls. I got it without problems.

LotteM
LotteM in reply to hausbauer

Good to hear about the buprenorphine and good for you, Christa. I hope you can soon quit the pramipexole as well. The fewer meds the better.

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