pramiprexole Withdrawal

[AllyBRLS]

Hello. I’m currently tapering off Pramiprexole under doctor supervision and I literally can’t function. I can’t eat, I’m shaky and very weak and can’t get out of bed ( it’s been 4 days now). Of course my RLS is going crazy but using opiates to help. Can tapering off these tablets really make you feel this bad? I’d really welcome anybody else’s experiences. Many thanks 🙏

[Fingerandus]

hi AllyBRLS yes they do make you feel this bad i myself am tapering off sifrol i am here now its 2.37 am Australia my legs are going off the scale. i cant sleep im over anxious im tearful my energy is non existent my arms ache my fingers hurt everything jumps by itself im down to 0.125 been on that for nearly two weeks .i am supported on this site i just read others sufferings and talk, it really helps i will come off them i am sorry for what you are suffering i hope you get better soon

[AllyBRLS in reply to Fingerandus]

Thank you so much for your reply. I’m so sorry that you are so distressed at the moment. It’s currently 8pm here in the UK. Coming onto the forum during a difficult period is a good idea, especially in the middle of the night. Are you taking any opiates to help with these symptoms? I wish I could offer advise to help you feel better. The only think that’s helped me is a very hot bath (gives temperate relief) and 100mg of Tramadol before bed. Handy in there and we’ll get through this and come out the other side. X

[Fingerandus in reply to AllyBRLS]

thankyou for your reply .... i went too bed at 6.30 am took a paracetamol forte and went to sleep until 7 59 am i have another appointment with my doc tomorrow i had a CT scan on my lumber spine on friday see what she says this time and ive had my thyroid tablet upped by 25 mg seems im low on thyroxine but shes a bit mean with the codeine .....stay safe keep it up we can beat this thing xxx

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

By the way it would help us help you if you would list the country and your gender on your profile and also check out the pinned post on completing your profile.

You are probably tapering off the pramipexole too quickly. I would suggest you go back up to a dose where you weren't suffering too badly and then follow this: To come off pramipexole, reduce by half of a .088 tablet (or half of a .125 mg tablet depending on where you live) every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and use or even increase your opioid temporarily to help out with the symptoms especially as you near the end. But in the long run, you will be glad you came off it.

Pramipexole (and Ropinirole) are no longer the first-line treatment for RLS, gabapentin or pregabalin is. They used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations.

On the gabapentin or pregabalin, beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Pregabalin is more expensive than gabapentin in the US. Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to divide the doses on pregabalin) Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin)." If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin).

Have you had your ferritin checked? If so what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.

Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak (Epsom salts), vitamins B1, B3, B6, B12, D3, K2, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

[AllyBRLS in reply to SueJohnson]

Hello SueJohnson and LotteM . Thank you so much for all this information. It’s a lot to take in but I’m very grateful. The reason I jumped on here is because I’m a carer for my partner and father but I’m totally unable to get out of bed since tapering off the Pramiprexole. I was taking 2x0.18mg at night but have cut that to 1x0.18mg intermittently every other night. I’ started tapering 23rd of December from the 2x 0.18mg daily to 1x0.18mg daily then after a week taking them 1x0.18mg intermittently as I said. I’m due to stop altogether tomorrow and I’m terrified of feeling worse than I already do.

As well as the RLS being aggravated I’m having leg pain, it’s as if someone is kicking my legs. I take 100mg of tramadol at night and it helps a bit. I’m also on 30x500mg of cocodomol three times daily for other conditions so the effect of opiates is reduced as I’ve become tolerant.

I began to have the serious impulse behaviours on Pramiprexole as well as augmentation which is why my neurologist wants me off them asap. I’m just scared as to how long withdrawal usually lasts ( I appreciate everyone is different) and how bad it can get. I just don’t understand how withdrawal can be so bad.

I take 1600mg of gabapentin a day (morning, afternoon and night) but I’ve been told I can go higher to help with withdrawal but I’m going to have to study the advice given from you Sue as noone has ever mentioned taking the gabapentin several hours before bed…I’ll need to try work this out. My iron levels were at 70 I think and was told that’s within the normal range and not given supplements.

I am going to try cannabis to get me through this, I don’t know what people’s experiences of this has been but I’ll look at the files.

Any more thoughts or other experiences would be much appreciated as I’m so worried about being incapacitated and not being able to help my family during this period.

Thank you so much x

[SueJohnson in reply to AllyBRLS]

You say that your iron levels were at 70 but is that ferritin? The usual test for iron does not test ferritin. And if it was ferritin, it definitely is not fine as what is fine for others is not fine for those of us with RLS. Call your GP to find out and reply back here and we can give you some advice.

Do not stop the pramipexole tomorrow and there is no point to taking it intermittently as that will make it worse. I would go back to taking one .088 tablet every day and let your symptoms settle. Don't rush it unless you like to suffer. Then when they have settled and you are able to get out of bed again, since you are having such a hard time, I suggest you get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks.

If your symptoms don't settle, you may need to go back up to one and a half tablets.

The gabapentin is not going to help you until you are completely off pramipexole and your symptoms have subsided. And you don't need to take it except at night. Don't however reduce your dose except by 200 mg at a time every 2 weeks or you will have withdrawal symptoms from that although nothing like from pramipexole. Instead shift it all to night as I advised above.

The time for the withdrawal symptoms from pramipexole can vary from a few weeks to a few months. For most it is a few weeks.

[SueJohnson in reply to AllyBRLS]

Leg pain is normal in RLS.

[LotteM in reply to AllyBRLS]

In addition to Sue's replies: What type of 0.18 mg tablets are you taking? If they are the slow or extended release type, they should NOT be cut to get smaller doses. Talk to your doctor or oharmacist to switch your to 0.088mg tablets.

You are in a difficult situation with the RLS problems and the care for your partner and your father. Actually, someone should care dor you as long as your RLS is not well controlled. Don't play down how the RLS affects you. Maybe it will be possible to get some of the caring load off your back? I do hope you can get that organised, as you'll need all the rest you can get to deal with the withdrawal. And finding an effective treatment afterwards may also take some time.

I don't want to demoralise you, but rather sketch a realistic picture. YOU need support, and here we can only provide experiences and moral support. Practical support has to come from your social network. I do hope it will be available.

Tale care. Of yourself first. Otherwise you cannot provide dor others. Well known, but so true.

[SueJohnson in reply to LotteM]

I suspect she meant .088 mg. As far as I know the only dose of pramipexole that is slow release is .26 mg

[LotteM]

Edit: see below. Sue was online and already copied her compilation. 👍🏻😃

Definitely can tapering off make you feel this bad. Do some reading on this RLS part of the HU forum and you'll find many experiences. And also many advises on how best to do the tapering, based on our common experiences. The past few months/years(?), especially Sue Johnson has collated all into a more or less complete advise. Including a slow taper of a very small dose per step (partly depending on your 'starting' dose - what dose did ypu take before you started tapering the pramipexole?). Each step no sooner than about two weeks, longer or shorter, depending in when/how much the increased symptoms settle and how much symptoms you can handle.

It helps to have an opioid available to take the edge off of the worse of the increased symptoms at each reduction. Which opioid do you have available? And at what dose?

Sue also list other things to attend to, mainly iron. And things to avoid, mainly antidepressants and sedating antihistamines. But also, many people's RLS reacts badly not e.g. alcohol, coffee, too much sweets , especially icecream.

Thus: have a look for one of the very many recents replies by Sue containing the full list. You'll need some time to study it and react accordingly. A lot it based on the updated algorithm for the treatment of TLS published in 2021 in the Mayo Clinic Proceedings. And - as I mentioned - our commmon experiences.

And, we're here to listen, sympathise and answer your questions as best as we can by sharing our own experiences. Because: we understand. So don't hesitate if you meed any of this, but do start with a lot of reading.

[707twitcher]

I've just come off Pramipexole after being on it for 12 years. My dosage was .25mg daily, but I had to double or triple that when I had a salty meal. Augmentation set in recently, moving me to full RLS from what was previously just PLMD along with needing more meds for relief. I guess I am very fortunate in that my transition off Pramipexole went fairly quick - a week at .125mg, then nothing. Buprenorphine (Suboxone) and cannabis got me through it. I started with 1/4 of a 2mg strip at bedtime, and took a few vapes (Indica strain) when the symptoms bothered me. I'm still playing with Suboxone dose to find what works best (using 1/5 of a strip currently).

I believe the gabapentin likely isn't working very effectively while you are still taking Pramipexole (Sue has commented about that).

Good luck! I know everyone responds to this differently...

[DurkaDurka]

I am also trying to get of sifrol have reduced from 2.5 tablets a night to 0.75 tablets a night. Been horrible getting bad augmentation with rls now impacting me in the morning. I really don't want to start gabapentin and have been using cannabis to sedate myself through the worst. Hoping to be off sifrol completely in a month

[Mipilimi]

hello Ally!

I am Linda from the Netherlands , and yes it will be over and done , but it will take you some time…. I come of Pramipexol in 3 months and it was not a walk in the park.

I thought I was going through a never ending story of walking and jumping in the night and crying . I now take pregabaline 6 x 25 mg .

I still have bad night, and especially when I don’t watch my food intake. Stay away from very salt foods, alcohol, antihistamines! Especially after 12 am. On this forum the advice is fantastic!

I read something about RLS and bacterial overgrowth, so I am looking into that !

I am glad you joined this forum, there are so many eye openers here to be found.

Take care, we are with you🙏

[AzraCG in reply to Mipilimi]

Pls share if u get info on the bacterial overload. Thank-you. I would try anything to make this go away

[Keith1231]

I went cold turkey as I didnt have any Premaipexole over Christmas and New year. I had been prescribed Pregabalin which are not effective until Premaipexole is out of your system. I dont have any RLS attacks at the moment although I dont sleep brilliantly.

[teakabeagle]

Itsure can be that bad. I withdrew once almost cold turkey and had horrific increase in RLS for about 3 weeks and then a gradual return to where I was before. Could not sleep, concentrate, eat and struggled through work, but I got through it. I weaned off Prami a second time about 4 months ago with the help of Buprenorphine and it was so much easier, but even with the Bup, when I got down to the last 1/6th of a .25 mg tablet, I did get breakthrough RLS. had to bump up the Bup to .4 mg from ,25mg . I’ve been stable on that since then.