Gabapentin vs Pramipexole Help pleas... - Restless Legs Syn...

Restless Legs Syndrome

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Gabapentin vs Pramipexole Help please!!!!

Jamhulio
Jamhulio

Hi all. Im suffering terrible with RLS every day. I also suffer with really bad leg pain. I work from home at a computer for 12 hour nightshifts twice a week. I get restless legs.7 nights a week even when working through the night has me in tears and almost giving up my job. I was prescribed pramipexole which did work but got scared when read about augmentation and impulse disorders as I have those tendencies anyway. GP has prescribed Gabapentin 100mg three times a day going up to 200mg three times a day in 5 days. Now I'm terrified about weight gain side effects as already put a lot.of weight on since.giving up smoking a few month ago. Has anyone else suffered weight gain? Also my main question is how should I split my doses? Should I stick with three times a day or just once ...im hoping I can stay awake for nightshift, 300mg a day hasn't made me tired at all. Any help would be amazing and sorry for long post but this is ruining my life and making me upset

31 Replies
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I'm so sorry that you're suffering so. I know it's of no help but I can relate 100% as I have this awful thing 24/7. I'm retired now so it doesn't affect me that way. I've not tried Pramipexole but, reading other people's posts, there's not much difference in any of them. Gabapentin & Pregabalin, so I'm told are bad for weight gain. I've been offered these but, as I'm overweight & arthritis in every painful joint, extra weight to carry would be no good. When we are all going through these things, we feel so alone. I didn't realise it was so widespread. I'm sorry I haven't answered your question but, I feel sure someone on here will be able to help. I'm sorry to for the extra long post, I live alone & tend to waffle. 😄 Good Luck 🤞

Jamhulio
Jamhulio in reply to Sootired15

Aw thank you. I hear you as I've put on loads of weight anyway with steroids for my crohns and giving up smoking

Hi Jamhulio,

Please don't despair, we hear what you are going through and how utterly miserable it is for you right now. But there are lots of things you can try, and it is a question of finding something that is suitable for you. We all react differently to different medications, so it may take some time to find what is right for you. But don't give up hope.

There is a ton of excellent advice on here, and if you search on Gabapentin you will find lots on how to take it.

Also, not everyone gains weight on it. I personally put on 3 lbs which really isn't a biggie in the scheme of things. I've read others on here had no weight gain. But you just have to see how each medication affects you. Sometimes it may be a combination of approaches.

300mg is a very low dose, it's a starting dose. You'll need to increase by 300mg gradually and it's important to note that it takes time for the Gabapentin to take effect. I think it's 2 - 3 weeks before it really works well. So increase the dose every 3 or 4 days by 300mg. I'd say get to 900mg and see if that works, then if not increase it some more as this is still a relatively low dose, but some of us are good at this level and you always want to take the minimum dose to have the least side effects. Talking of which, you may have nausea to start with but it should hopefully lessen or go. I believe most of us on here do not take it during the day, but I am not sure how all of this fits in with working a nightshift. Do you always work nights or have shift patterns?

Also, Gabapentin doesn't give an immediate effect so you need to take it before bedtime. I used to take two thirds of my full dose about two hours before bed, and then one third at bedtime. This gave a better coverage. And don't take magnesium at the same time as it inhibits the absorption.

In the meantime, while you build up to your optimum dose, perhaps you can take some paracetamol-codeine to help with your symptoms. It might give you some more relief from them.

Hopefully someone else in our community will have some advice on changes around working nights.

All the best.

Sampsie
Sampsie in reply to Sampsie

Although please do read the other posts (I know Manerva has written lots on this) to check if 900mg sounds about right.

Jamhulio
Jamhulio in reply to Sampsie

Thank you for replying. I work two consecutive nights every week and two 5-11pm or 3-9pm. Its good to note some people haven't gain weight. Ive already gained a lot through steroids for crohns and also giving up smoking. I will have a think about when to take doses. Im supposed to take 200 x 3 today but might just try 600mg at night but worried thjs won't help my daytime pain. I will take cocodamol for break through pain as not sure GP will prescribe me anything for pain. Thank you again for replying

Hello, and I'm so sorry that your RLS is causing such distress.

Just to clarify, you say you were taking pramipexole, but you don't say whether you are still taking it. If you stopped taking it when did you stop taking it and how quickly did you stop it?

This may be a factor in your current situation.

I'm afraid there is no easy solution for you. The significant factor is working nightshifts.

Unfortunately RLS is a "sleep related" or "circadian" disorder which means it usually occurs at night. This is because normally the daily rhythmical variations which take place in our bodies prepare us for sleep at night. One of these cycles is the levels of dopamine which is at its lowest at night, so this is when RLS usually occurs. This is also why a dopamine agonist e.g. pramipexole works.

These daily variations are synchronised with each other and are regulated mainly by light, i.e. daylight is usually when we're awake and night is usually when we're asleep. They're also influenced by activity levels.

Our circadian rhythms can be adjusted and re-synchronised. E.g. when we travel across time zones, we may get jet lag at first because the light - dark cycle changes. After a few days we adjust.

In this case people who regularly work nightshifts e.g. 5 days a week, working at night (under artificial light) and sleeping in the day (in a dark room) may have some chance of their circadian rhythms adjusting to this. Hence in their case, dopamine levels may be at their lowest during the day - not night, and their RLS will be worse during the day. They can take their RLS medication regularly - before sleep.

In your case, as you only do two nightshifts a week and depending whether you do them consecutively or separated it may be that your circadian rhythms are disturbed.

Sorry this is long winded, but it seems that for someone with RLS irregular nightshifts are not at all ideal.

Ideally it's better to take RLS medication 2 - 3 hours before bedtime and at the same time every day. This means also going to bed the same time every day. Which presumably, you don't do.

I don't know what your sleep pattern is, but I would say that if you don't get RLS symptoms during the day, the day after you've done a nightshift, then in some respects it may be better to take the whole daily dose in the evening as Sampsie suggests. If you split it three ways as you are doing now the level of it in your blood will rise and fall over the day, but will never be as high as if you take it all as one single dose.

If you only get symptoms at night, you only need it at night.

Also note, as Sampsie says, it take a few weeks for gabapention to work and 600mg is probably not sufficient.

It's also not ideal to work nighthshifts because gabapentin does make you drowsy. Taking gabapentin can cause this during the day. This may wear off after a few weeks, but you may still be drowsy at night. This could be a dilemma then.

Gabapentin can cause some people to gain weight, but not everyone.

Overall, it may be a matter of trial and error for you, getting the dose and timing right and it may take a little while to do it.

Let us know how you get on.

Jamhulio
Jamhulio in reply to Manerva

Thank you so much for your reply, means a lot to me. I only took the pramipexole for a week before I read about augmentation etc on here and got scared. I work the same 2 nightshifts every Tuesday and Wednesday. I can get restless legs through the day but majority is a nighttime, 9pm it starts but can be as early as 6pm. I think I thought gabapentin would be useful as my legs are painful and thought Gabapentin would address this issue. Do you think id be better off on Pramipexole with working nights and try and keep at low dose and just try painkillers for leg pain. I also have crohns disease which I why k originally started doing late shifts as I was less poorly on a night time. Crohns is well managed at the minute. Thank you again. Ive been lurking reading posts for a while

Manerva
Manerva in reply to Jamhulio

I would advise against the pramipexole, it's not a long term solution. Whrn it goes wronh, which it commonly does, it's very hard to stop it.

I suggest you persist with the gabapentin. You can split the dose 2/3 later in the evening and 1/3 2 - 3 hours earlier. e.g. 600mg and 300mg.

What Ididn't mention is that iron deficiency is a major factor in RLS and blood tests for serum iron, transferrin, ferritin and haemoglobin would be a good idea.

Normally, it's recommended that if ferritin is below 75ug/L then you ought to start iron therapy.

However, if you have any inflammation your ferritin may be misleadingly high. Even if it's over 75ug/L it might be worth looking at iron therapy.

Here's a link to some info on this.

You may also benefit from extra magnesium, vitamin B12 and vitamin D.

Inflammation is also a factor in RLS and hence your crihns may be contributing to it. I'm sure however that you are cateful about your diet

Jamhulio
Jamhulio in reply to Manerva

Thank you. I have been to gp today and discussed meds. Gabapentin is helping leg pain 300mg. I don't want to go higher yet because of weight gain and other side effects. I can handle the rls if I have to most nights resorting to vaping cbd and thc but its at its worst when working nightshirt as I audio type through the night pressing a foot pedal and its torture. Prampixole works for me if I take it 2hrs before my shift along with cocodamol and compression stocking. I'm hoping its okay just to take pramipexole two nights a week for now and this will make augmentation less likely. In the future I will maybe look at upping Gabapentin but right now I need to do what works quickly so I can keep my job. Will I be okay using pramipexole when needed, ie twice a week or does it not matter how often I take it? Thank you again for help

Manerva
Manerva in reply to Jamhulio

Pramipexole is really not the kind of drug you can take on.an "as necessary" basis.

It is very dependency producing on even a low dose and this means it can cause withdrawal.effects when you don't take it. Withdrawal effects can occur within 24 hours.

You may find then that if you miss a dose, not only will you have RLS symptoms, they will be worse.

You can of course try this if you wish, but I wouldn't advise it.

If you're not actually experiencing augmentation as yet and wish to continue using pramipexole, then it may be better to take pramipexole every day, but no more than 0.125mg.

Jamhulio
Jamhulio in reply to Manerva

Thank you. This was my fear. GP said it would be okay but honesty I've given up with GPS, seen 3 in space of two weeks and they aren't taking me seriously at all. Maybe id best take it every day but definitely not increase the dose. To be fair I havent had rls for last three nights while been on the gabapentin low dose but its back tonight when I decided I would try taking it about 8pm rather than through the day it reared its ugly head at 7pm and beat me to it. I'll have a think about what to do for the best. I just want to stay on possible lowest doses of any meds and gabapentin terrifies me re side effects but to be fair I havent had any so far. Its all a minefield and so much misinformation out there. I read somewhere pramipexole could be taken as and when needed but clearly false information

Jamhulio
Jamhulio in reply to Manerva

Hi sorry to be a pest but im confused as two months ago someone posted asking if they could take pramipexole once a week to avoid augmentation and lots commented and said it was a good idea including yourself. So would I be okay taking it once a week along with daily gabapentin as the person in the other post is? Post was headed up Will using pramipexole once a week cause augmentation

Manerva
Manerva in reply to Jamhulio

You can but try it and see what happens. I have read some people can do it.

If you only take it once a week, then you're unlikely to get augmentation. However, there may be 6 nights when you get symptoms.

You may need to find your own balance.

The main thing you can do to avoid augmentation is not to increase the dose.

Jamhulio
Jamhulio in reply to Manerva

Thank you. Im sorry if I sound like I'm all over the place. Im just struggling to know what to do. The more I think about it im happy on the gabapentin as its helping pain, I'm just panicking as have nightshift tonight and don't know how ik going to get through it as legs were terrible last night and I know gabapentin takes weeks to work and only on 300mg at the minute anyway . Thank you for listening to me and my panic and rambling. I really appreciate it

Manerva
Manerva in reply to Jamhulio

As the pramipexole doesn't seem to be actually causing problems at the moment, why not continue taking it until the gabapentin has chance to work?

Jamhulio
Jamhulio in reply to Manerva

That sounds like a plan and then at least I know ill have relief for my symptoms at the minute. A strange question but how will I know when the gabapentin is working and dont need the pramipexole anymore? Do I just come off the pranipexole in say three weeks and if remaining sympfom free then I know the gabapentin is doing its job or just stay on both as long as they working but don't up the pramipezole. Im also going to continue taking ferrous fumarate and adcal, I was taken off them weeks ago as were upsetting my stomach. I 100% believe i need more iron since I had a bowel resection and was prescribed it and maybe that will help.

Manerva
Manerva in reply to Jamhulio

I'm afraid you won't really know if the gabapentin's working until a couple of weeks after stopping pramipexole.

In addition, if it doesn't appear to be working after that, then it may simply the dose is too low.

Maybe give yourself a break! If you're happy taking both and getting good symptom relief without undue side effects, why not just continue with that until if and when any change occurs.

The oral.iron supplement generally recommended on this site is "Gentle" iron. ferrous bisglycinate. It is less upsetting for the gut.

It's also better to take it every other day, not daily. More of it actually gets absorbed like that.

Jamhulio
Jamhulio in reply to Manerva

Thank you. I think that's what I'll do. I just had several people telling me to not take pramipexole but ill just come off it when it starts to cause problems. Thats great about iron. Ill source that and hopefully be gentler on my stomach

Manerva
Manerva in reply to Jamhulio

I often warn people not to start it, if they haven't yet started it or if they've just started it.c I advise against it.

If someone's been taking it a while and they're not having any problems then I just warn them about augmentation because most people don't get warned and suffer more than they need to when they do get it.

That was my experience I had it for several years!

If I can see that a dopamine agonist is causing more problems than it's solving, then I'll advise stopping it.

Really though, if it's working for somebody and they're having no problems then why not continue, because there's no 100% guarantee that the alternatives will work.

Manerva
Manerva in reply to Jamhulio

I forgot the link!

Here it is

sciencedirect.com/science/a...

I can't comment on the Pramipexole, but from what I've read on here it's not a good idea.

Another thought - have you looked into triggers? Sometimes working out if you have triggers (this can take time) can make a difference. And have you had your iron ferritin level checked?

I think as Manerva points out, juggling RLS and night shifts isn't ideal but it's a predicament when you can't work in the day. I hope it works out.

Hi Jamhulio

I am so pleased that you have been able to express here just how awful it feels for you at the moment. I have been looking for a specialist to help me for a long time now as I am in severe augmentation from 22 years on Pramipexole. That does not happen to many people but if it does it is hell. It was the first time I have heard anyone from the medical profession say clearly that several forms of RLS create a serious and terrible disease for so many people but with the right care it is manageable.

You are aware that RLS is Circadian disease. In other words the production of the chemicals in the brain where is all goes wrong is a response to the length of day and night. It occurs in the evening and at night time. This has nothing to do with your behaviour, it is to do with how your brain is working. At this is centered around an important brain chemical called DOPAMINE. Particularly at night time not enough Dopamine is being made.

Pramipexole was sold back in the late 90's as a magic answer to RLS. as were two other similar chemicals. Pramipexole is what is known as a Dopamine Agonist. This means that it slots very nicely into your brain and does the job of Dopamine if you don't make enough.

It like with many drugs however our body's are clever and recognise this isn't the real deal and it stops working so doctors increase the does until it increase all aspects or RLS until its inbearable.

IN the States, they have passed a new medical guideline this month stopping Pramipexole being used as frontline drug for RLS. These dopamine agonists can be used but for short time periods interspersed with other different effective drugs.

The trouble is everyone's physiology is subtly different and we respond to different drugs in different ways.

Gabapentin or Pregabalin are the drugs of choice. I have just been started on Gabapentin so that in the end they can take me off pramipexole. I am on a very tiny does of 300mg at night and I built up to that. Its been given at night because that's when for me all hell breaks loose with my RLS. But you can indeed go up to much higher doses. Pregabalin and Gabapentin are given for neural pain which id what RLS causes. They do take time to build up effectiveness in your body and you can end up on much more that you are taking now ......

Just read Manerva's response and although we are all saying the same thing .. Manervas comments are usually spot on.

Please don't go don the pramipexole route ... and et us know how you get on with Gabapentin as it builds up in your system. Cant do much about the night shifts but good luck XX

Ebi1909
Ebi1909 in reply to HilsK

Hi HilsK, where can I find the new medical guideline?

HilsK
HilsK in reply to Ebi1909

cks.nice.org.uk/topics/rest...

The rls-uk.org website associated with this forum has updated to include lots of helpful stuff. too

Jamhulio,

I will attempt to make this as short as possible.

I am 80 and male and have lived with RLS on and off most of my life.

I can't tell you many bad RLS doctors I have experienced. First and foremost get and keep a good RLS doctor.

I have been through an augmentation experience as a patient taking Pramipixel. It's not a pleasant experience, I know 1st hand. I had to get off the Pramipixel and use something else until my body could "wash out" any traces of the Pramipixel and then I got back on it, just because it's very effective in helping me manage my symptoms which can be very severe. I have to also take 600mg Harizant and a light Norco.

I weighed my options and continuing to deal with the never ending RLS Symptoms or taking the Pamiapixal was not an option for me. I can live a fairly good and normal life taking Pramipixel and other meds on a set and exact time schedule.

I can't tell you what to do , just what I have done.

Jangling I'm afraid I may not be much help I have taken pramipexole for a few years I was coming to the end of my tether when I had a conversation with a doctor who was visiting where I was working. He gave me the name of two drugs that he thought would help I then went to my doctor who had been my greatest help she read up about it and chose to prescribe the pramipexole I had to start on one about 3 hours before bed and to increase the dose gradually up the dose to a maximum of 6 and I had my first nights sleep after years of being disturbed. After a few weeks my feet swelled and I could hardly walk the doctor said to slowly wean myself down until the swelling dissipated and I managed to eventually get down to one daily and I stayed comfortable for a few years then it started again and it got to the stage where I was awake all night and a few times I fell asleep on my feet and has a few nasty injuries. My doctor advised to go back up to 6 at night which I did do I am now down to 2 tablets daily and I am staying at that dose. I have n idea what augmentation is I am just pleased to be able to sleep. One other thing is it was found that I had a lack of ferriton in my blood which could be a factor in RLS. Sorry I can't be any help I live in fear of it returning I think it is a case of getting the doses of drugs adjusted to each sufferers need.

Sorry predictive text has spelled your name wrongly.

Sorry to hear how bad you're having it..... I'm on 900mg of gabapentin, 3 times a day, for neuropathic pain, vertebrae and discs in my neck are badly worn, trapping my arm nerves and causing massive pain. I must say, I think that the gabapentin makes me less hungry, I don't really have an appetite. I hope it works for you, I'm on clonazepam for my rls, and, fingers crossed, it is working well. Take care, and good luck. 😉👍🤘✌️

I did receive a question from you but I just don't know how to find other than email, sorry. My experience is that I was put on Pramipexole 11 years ago. 6 years ago I contracted MRSA after hip surgery and went through 6 weeks of receiving very strong antibiotics including Vancomycin through a pic line. By the end of the 6 weeks the Pramipexole seemed to stop working so I stopped it immediately. I didn't sleep for 7 days. I was convinced I was in augmentation. My Dr. totally disagreed. He talked me into going back on it. He was right. It was working again. It has been 6 years and sometimes I get the RLS but it only lasts about an hour so I can deal with that. Other days I have no symptoms. I cut it in half and take half in morning and half after dinner as I have it in my arms also and during the day as well. I simply cannot go without it as it has given me a more normal life since I can sleep at night. It has been a Godsend to me as I am 59 and only got relief for the past 11 years. Just my experience.

Jamhulio
Jamhulio in reply to Remeuno

Thank you for your reply. I think as long as it works for me I'll keep taking it, are you still just on the the original dose?

I take 1.5mg tab. I half it up so it will work day and night. I'm so grateful for it. 😊

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