RLS and pramipexole

[Enable]

I'm 60 and have had RLS for about 4 years now. I have been on pramipexole 0.18 mg all that time and it has worked well enough. I only had RLS at night but over the last 6 months I've stated getting it occasionally in the afternoon and slightly in my arms too. Its generally starting earlier and sometimes bothers me during the night now. Is this a sign of pramipexole efficacy dropping in me ? By the way I am not overweight and drink decaf tea . This is my first post , just seeking advice really. I'm just worried it's getting worse. Is there a supplement that may help? Thank you for taking the time to read this.

[Madlegs1]

Check out the pinned post below on " augmentation"Good luck.

[Hidden]

Sorry to say, as Madlegs suggests, it appears you are beginning to experience "augmentation".

See this link

tcks.nice.org.uk/topics/rest...

[2islandboy in reply to Hidden]

Ditto, learn about augmentation! I VERY SLOWLY tapered off pramipexole, as advised by Manerva, Madlegs1 and others. Their advice probably saved my life! I was going through augmentation hell and just kept upping the dose of pramipexole. I used to think that Pramipexole was a wonder drug -- quite the opposite!!!!! I have three unopened bottles of pramipexole that I will give to any fool who wants them!

[Enable in reply to 2islandboy]

Thank you for your advice. What do you use now ?

[2islandboy in reply to Enable]

Well, this is the joke and I say it quietly because everybody is different. I now use nothing - my RLS is gone. A mystery?? I will say, that while dumping the Pramipexole, I was in intensive, no bullshit psychotherapy and making many major life changes. During my 20 year Pramipexole mess, I was also in an unpleasant marriage, which ended and necessitated the intensive psychotherapy and a period of personal growth. I can not advise about an alternative. There are many suggestions given by others here...

[Hidden in reply to Enable]

See the link I gave you to find out about the recommended treatments for augmentation.

Here it is again.

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

It's not advisable to switch from.pramipexolr to any other dopamine agonist or to drugs that are even more likely to cause augmentation, i.e. anything with levodopa in it.

Note that some dtugs, e.g. antihistamines can make RLS worse and should be avoided.

[Enable in reply to Hidden]

Thank you Manerva

[LotteM]

I second Madlegs and Manerva.

One warning: don't let your doc up the dose! Rather, it should be reduced or stopped. I stopped early on with forst signs of augmentation and probably thereby prevented hellish withdrawal and maybe permanent damage.

Read through this forum, NICE, rls-uk.org and get informed. And keep in touch. We're here to listen and help.

[RLSinNZ]

I felt that pramipexole was not doing so well for me, with possible augmentation - I was taking 1x 0.25mg a 2.5 hours before bed and half a tablet when I went to bed. Was also using an antihistamine to help with drowsiness. Went to GP to seek alternative a couple of months ago and she put me on Sinemet 100/25, one tablet half an hour before bed. I didn't have to reduce the pramipexole, just switched and immediately had very little RLS - very pleased indeed. Didn't take the antihistamine either and was getting to sleep heaps better. Am waking up every hour or two, but not with RLS and I'm usually getting back to sleep quite quickly. I looked into the Sinemet and apparently it was one of the first Parkinson's drugs used for RLS and others used later were supposed to be better. This one is suiting me, for now anyway. Less of a dry mouth too. If I get dozy in the afternoon - on a couple of flights earlier this week, my RLS was there again, but not at bed time. A massive relief and I hope it continues.

Might be worth asking your GP about it. I'm 58 and have had RLS for several years, using medication to help for the past three or so. Haven't figured out any supplements.

[Lilcatfeet in reply to RLSinNZ]

They’ve learned that both antihistamines and antacids tend to trigger rls. My personal experience can verify both. Also sugar intake can be a trigger, especially at night.

[Hidden in reply to RLSinNZ]

Pramipexole can appear to be a wonder drug at first. All those who've suffered augmentation as a result of taking it however would not agree.

Internationally it is no longer recommended as the one of the first drugs of choice because of this.

Of the three dopamine agonists, pramipexole is the worst for causing dopaminergic augmentation.

There is however one dopaminergic drug that is even worse for augmentation. Because of this it is no longer used for RLS.

Sorry to say that drug, which is the worst possible for augmentation is called levodopa and it is the main constituent of Sinemet

Whoever prescribed you sinemet then, is not only doing you a disfavour, they are also ignoring the recommendations on how to treat augmentation.

Instead of replacing the pramipexole with something that is less likely to cause augmentation, they are replacing it with someyhing that is more likely to cause it.

see this link

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

Other treatments for augmentation are iron therapy, e.g. iron supplements and avoiding aggravating factors e.g. antihistamines.

[FluteE]

I would exhaust all other things before trying to get off pramipexole. I had a similar experience and found out it was one of the medicines I was also taking . I still take pramipexole at the lowest dose 1x nightly and have been for quite some time now. Here’s a list that Joolsg gave me and it’s a lifesaver! I keep this list with me at all times especially when going to the dr or hospital! They don’t know ! Joolsg helped me keep my sanity!

[Hidden in reply to FluteE]

You're quite right to avoid the medicines that can aggravate RLS and sonetimes this in itself can help.

Some people can msnage to continue on a small dose of pramipexolr. For some people however, even a dmall dose can still cause augmentation.

Switching to a non dopaminergic alternative which can be just as effective would seem to be a better option.