Help with weaning off Pramipexole (newbie)

[KriewelBene]

I always find it difficult to explain my restless legs to someone who has not experienced it before. I don’t think people really understand how bad it can be to live with RLS. It is not something you can see and you do not look sick. You just look weird not being able to sit still. For me, the best way is to compare it with the feeling of a million little insects that are crawling inside your legs and you cannot keep yourself from moving your legs.

I have struggled with RLS since high school. I experienced symptoms mostly at night, but had it fairly under control by doing moderate exercise, taking a shower just before bedtime and sleeping with a warm bean bag. I did however really struggle during long car drives or flights, especially when travelling during the night. When I planned an overseas trip in 2012, I decided to try Pramipexole that was being advertised as a miracle drug in the media. I asked my GP if I should take it when needed or regularly, and she advised me to take it regularly. I was on 0.125mg for a short while before increasing the dosage to 0.25mg. In the beginning, the Pramipexole made a huge improvement to my RLS. What I did not realise was that this would be the beginning of my real struggle with RLS.

After a few years my symptoms worsened dramatically. The RLS would start in the afternoon and would continue into the evening. It was very difficult to sit still at work or watch TV and visit friends in the evening. I would take 0.25mg of Pramipexole at 20:30 and by 22:00 it would start to work and I would be able to sleep. This has been ongoing for the past few years. I went back to my GP and also consulted a neurologist. Augmentation as a possible side effect was not mentioned. Perhaps it was not such a known side-effect at the time

I also asked the neurologist about Etifoxine that I would take now and then when dealing with stressful situations (e.g. presenting at a conference). A surprising side effect was that it also helped with RLS. The neurologist was however not able to explain the possible link between Etifoxine and RLS. She mentioned that it may be that stress worsens my RLS, but I never noticed this. It does however worsen when I’m bored or tired.

I have relocated to Australia three months ago and had to get a new script for Pramipexole. My new GP mentioned that I may be experiencing augmentation and prescribed Pregabalin and told me to stop using Pramipexole. Four weeks ago I took the Pregabalin 75mg instead of Pramipexole, but it did not make the slightest difference to my RLS. I tried to sleep, but my legs inadvertently twitched every few seconds. After two hours (and Googling to make sure that I’m not overdosing) I took another 75 mg Pregabalin pill. This did not help either and just made me feel very dizzy. After another two hours I gave up and took 0.125mg of Pramipexole and managed to fall asleep at 03:00. While walking up and down and Googling I came across your support group. It has been a great comfort and source of information to me. I never realised that so many people struggled with RLS, and that even though one sleepless night feels like the end of the world to me, there were others that suffer way more than I do.

After reading some of the posts, I realised that I should probably not try the cold turkey approach and rather try to wean myself off Pramipexole. I have now reduced the dosage to 0.1875 mg for the past 3-4 weeks. So far it has been ok – I sometimes wake up a little earlier with twitching legs, but it is not too bad. I am going to reduce the dosage to 0.125g soon, but realise that I will probably need more help when I reduce it even further.

I will go back to my GP and she will probably refer me to a neurologist, but I have a few questions I would like to ask in the mean time.

• Any suggestions regarding the weaning off Pramipexole​?

• Is there a possibility that the Pramipexole has damaged my dopamine receptors and that Pregabalin would never work for me? Are there other drugs that I could try?

• I have read that Magnesium could help. I have tried this a long time ago, but it did not seem to help. Is there a specific type that works better than others (I see so many options in the market)? I’ve seen some mentions of Magnesium citrate. What dosage is recommended?

• B12 is also mentioned - what dosage is recommended?

• I have tested my iron levels in the past, but understand now that what is normal for non-RLS sufferers are not the same as for those with RLS. I will get this tested.

• Anything else you could recommend?

Thank for taking the time to read my post.

[Hidden]

Hi, I'm horrified that your doctor should suggest you stop pramipexole cold turkey. The warning is clear enough on the patient leaflet. There is a (small) risk of Neuroleptic Malignant Syndrome- very dangerous.

That's apart from the issue that suddenly stopping it can casue very severe withdrawal symptoms.

Your plan to reduce the dose in steps of half a 0.125mg tablet seems reasonable. I'd say reduce it once every 2 -4 weeks. No less than 2.

I don't know how long you've been taking pregabalin, but it can take 3 or 4 weeks to start working and in addition if you're still experiencing augmentation or suffering withdrawal effects it's not going to be fully effective anyway. I'm afraid you'll have to wait until you've stopped the pramipexole to see how well it's going to work for you and what dose is right.

There are some suggestions that dopamine agonists can cause some permanent damage.

I recently read a study that compared the effectiveness of a gabapentinoid for people who had taken a dopamine agonist before and those who hadn't. Apparently it made no difference, it was equally effective for both.

However, none of the people who had taken a DA before had suffered augmentation. It's that which makes a difference.

However, I was on pramipexole for years and switched to gabapentin and it works for me. So you will have to wait to see.

I don't know what type of magnesium is best.

Vitamin B12 and D are good, just whatever dose they come in really, you don't need much.

The key blood test for iron is serum ferritin . The simple rule is if your level is under 75ug/L then it may help to start taking an oral iron supplement. If it's over 75 you can still take one. but it's not going to be as helpful.

Here's a link to some information.

sciencedirect.com/science/a...

The other thing to do if you're taking any other medications for anything else that may be on the long list of medicines that make RLS worse.

The other medicines used for RLS are opioids. Weaker opioids can help with withdrawal symptoms. Some people take only an opioid for RLS. In that case you'd need a low dose potent opioid such as oxycodone or buprenorphine.

You will also find information about diet and RLS on this site.

[KriewelBene in reply to Hidden]

Hi Manerva,

Thank you for your advice and the information you shared. I was not aware of Neuroleptic Malignant Syndrome - the effects/symptoms listed are scary. I will mention this to my GP.

I have only taken two Pregabalin pills. According to my GP I should not combine Pregabalin with Pramipexole, but now I'm wondering about this. Can I take both during the transition phase - especially if it is going to take a few weeks before it starts working?

I'm not on any other medication.

[Hidden in reply to KriewelBene]

You can take them both at the same time. Lots of people do. I took gabapentin (which is more or less the same as pregabalin) and pramipexole at the same time for about ten months.

see this link, a list of other medicines pregabalin interacts with - no mention of pramipexole

bnf.nice.org.uk/interaction...

see this link, the other way round, a list of other medicines pramipexole interacts with - no mention of pregabalin

bnf.nice.org.uk/interaction...

[DicCarlson]

I found this article on Etifoxine - it does act like a benzo (targeting GABA receptors) but without many of the side effects. gonootropics.com/etifoxine-...

[KriewelBene in reply to DicCarlson]

Thank you for the link! I will read up on GABA receptors. Etifoxine is currently not available in Australia, and as far as I understand the trial that was planned for 2020 (?) was delayed due to COVID.

[Junebrad]

I wish we could explaine what it feels like to have Restless legs im afraid its something you need to go through. I didnt even know what I had untill I was turned sixty, I am 84 now all I knew was I could not keep still. When I was a child my mom would say I had growing pains and rub my legs. When I got married I used to kick my husband out of bed untill we went on holiday one year and had to sleep in seperat beds. We relized how bad it was and brought separet beds wonderful. RLS wasnt reconised when I was growing up and all through my life, it was only after my husband died and I went and did some computer classes that I found out about RLS so you will know a lot more about it than me, I take pramipexole ev ery night and do not even think about stopping, I think if you can find something that helps you get through the night go with it Im a firm beliver if I can get through the night and day with out pain Im happy to live with it ,

[KriewelBene in reply to Junebrad]

Hi Junebrad,

The separate beds sounds like a good idea! My mom (75) has it too and when she was growing up no-one was aware of RLS. When I was in my twenties (I'm 46 now) I tried to get more information about RLS, but gave up after finding close to nothing on the internet. I'm surprised at the wealth of information that is available now and the online community of people out there with RLS.

Your point about finding and sticking with something that helps is very valid. I'm glad to hear you have it under control. If it was not for the RLS driving me nuts during the afternoons I would stick with the Pramipexole. Taking it in the afternoon makes me too sleepy, so that is not an option. If the other medication does not work, perhaps I can get away with a lower Pramipexole dosage. I will have to wait and see how the weaning goes...

[Junebrad in reply to KriewelBene]

Im glad I could be of any help hope you find something soon that suits you and then just go with it .