Update on Weaning off Pramipexole (Mirapex)

[libraryannie]

It's been 4 months since I wrote last. At that time I had reduced my original decade long dose of 1.5mg to .75mg over the course of several months taking it at .25 step. I am now at .5mg and have been for a while. As others have reported, venturing below .65 is when withdrawal symptoms really start to kick in. If I take the .5 pill on time (between 6 and 7pm) I have a good night, but can experience some restless legs in the morning until I get up. That never happened on a higher dose, but is easily remedied by moving. I am still taking LDN (Low Dose Naltrexone...I slowly increased the dosage all the way to the max of 4.5ml and then backed down to 3.5-4ml which seems to work the best for me). I am not sure if it is helping mitigate withdrawal symptoms but I have noticed three changes that have been attributed to LDN by others. I had an eye twitch for years that has completely disappeared. I seem to have better bladder control. And this winter's flu was surprisingly mild (knock on wood!!) compared to the violence of previous years. My husband has not been able to shake it for over two weeks and has been coughting so hard his ribs hurt and he is exhausted (that has been my typical experience but this year I experienced very mild symptoms and a bad cough for one day). So another thing LDN is supposed to help with is RLS. And my mild symptoms at .5mg of Pramipeole could be attributed to LDN. I am not taking any opiods. I have admittedly been a little chicken to cut the next .25mg, but feel like I am stablized at .5 and need to try reducing further now. I am wondering...if I can get back down to .25mg without opiods, and RLS was under control, could I live with that instead of completely giving it up? Maybe alternating three or four days on and one day off??

I almost neglected to mention that, at bedtime, I still take a toke of marijuana (a heavy indica) which helps me go to sleep immediately!

[LotteM]

Why not?

The adagium is not to increase. But if you have found a stable regimen, why not stick to it? I would encourage you to find the lowest effective dose, halfves of pills often work surprisingly good as well!

[1stdoginohladdie in reply to LotteM]

I take 3 2mg tablets a day. Sometimes they work, sometimes no. I'm thinking aout looking into medical cannabis. We can use it in Florida, just can't take it out of state. Federal govt. still does not Our new govenor is trying to have the smoking kind approved,

[Henshaw241241]

Hi I have had RLS for years been on different tablets no good then a new doctor sent me to see a neurologist very good checked me all over I was on pramipexole very small dose she told me they were not very strong so she put me on 0.18 mg 1 at 1500 then one at 2100 worked for a few months now it seems it comes on about 1600 so I phoned her then she told me to take one at in the morning to works sometimes just feed up with it as I am writing this email I have it comeing on now walking around outside wish there was something for RLS I have cold feet all the time I am sure that brings the RLS on all the best to you Henshaw 241241

[involuntarydancer in reply to Henshaw241241]

It's not always a good idea to increase the dose of pramipexole, Henshaw. It can lead to symptoms gradually getting worse (even though there may be a temporary period of improvement). I wonder is your neurologist familiar with the concept of augmentation on pramipexole? Did she check your serum ferritin (iron levels)? I would not be inclined to increase the dose of pramipexole further even if she says you should. It is likely to make your symptoms worse in the long run.

[jennymsolo in reply to involuntarydancer]

True. It made mine worse and now I'm a mess. I've reduced it but for an hour after I take it I jerk violently all over and want to scream it's so annoying.

[involuntarydancer in reply to jennymsolo]

Reducing/eliminating pramipexole is extremely difficult and leads temporarily to vastly exaggerated symptoms. They do pass eventually though. Good luck in your reduction.

[involuntarydancer]

it's good to hear from you, libraryannie, and well done for cutting back on pramipexole. Maybe Lottie is correct and you could stay on 0.5mg for now. You could cut back further (paradoxically) if you start to notice the 0.5mg is not covering your symptoms so well as that might indicate an onset of augmentation. Maybe at that stage you could consider a temporary opioid to get you through the worst - unless the combination of ldn and cannabis continues to help enough of course. 0.5mg is so much lower than your original dose - you should feel very proud.

[Parminter]

Why do you not divide the dose? For example, take half at 6pm and the rest at 10pm. That might give you a little respite i the morning.

And I agree with dancer, ask for an opioid to help you through.

[Hidden]

Hello! Kudos on your amazing work so far!

My recommendation to you would be to do whatever works for you. If that means staying at 0.5 mg of Pramipexole, then so be it. Please don’t ever think that you are chicken about trying something you’re not comfortable with. We want you at a place you’re comfortable and can live comfortably, which I think is the ultimate goal for everyone here. It is your decision where you go from here on out.

[gaula75]

Thank you, jess3648, for your wonderful reply. After reading so many post on here denigrating Mirapex, that I stopped getting on here as it made me feel so guilty for using it. I, too, feel that the ultimate goal is to find a place/treatment that allows you peace from RSL. So many drugs have side effects, I believe sometimes you just have to pick and choose what works best for you and go for it.

[Hidden in reply to gaula75]

you're welcome!

[LotteM in reply to gaula75]

Wise words, gaula. “You have to pick and choose what works best for you and go for it”. And indeed, many people do well on dopamine agonists. Augmentation and thus the need to reduce is not a given. Although on here it seems like it. We all have to be aware that only a small selection of RLS sufference attend this forum, and that is those with problems and uncontrollled RLS - otherwise there is no need need to be on here. I hope your low dose Mirapex continues to work for you!