Pramipexole.

[Joannebbk]

I have been prescribed Pramipexole for my RLS. After taking gabapenten for 2 weeks with absolutely no improvement I am hoping for a small miracle with this new prescription. Has anyone had any joy with it?

[Madlegs1]

My feeling would be to continue with the Gabapentin for at least another two weeks, to allow it to actually take effect. Most authorities reckon it takes three wks to become effective.

At the least I would also then ,play around with dose and timing.

Going to Pramipexol would be a major retrogressive step, in my opinion, and the collective experience of this forum.

If the Gabapentin ( or Horizant) doesn't work after all the various trials, then you should be put onto Lyrica for a trial.

It would not be good practice to go to any Dopamine agonist, at this stage of your treatment. Except to determine whether you actually have RLS.

Good luck.

[silkyreg in reply to Madlegs1]

Lyrica has also tremendous side effects. I became very aggressive and had to stop taking it.

[LotteM]

I second Madlegs. Also, it may be worth looking into your dose of gabapentin. Usually, doses of at least 900mg are effective, only few people can get away with lower doses for effectiveness. And, take all in the evening, do not separate into morning and evening doses. RLS typically only occurs i.mn the evening / at night, and morning doses of gabapentin may cause sleepiness or drowsiness during the day. With evening doses this aide effect is of course much less of a problem.

[Hidden]

I'll third that!

You need to try gabapentin for at least 4 weeks and at an effective dose. i.e. as Lotte says.

I'd advise against starting pramipexole.

It's now become a recommendation that dopamine agonists like pramipexole, ropinirole or rotigotine are NOT used as the first drug of choice because of the high risk of horrendous complications.

[Joannebbk]

Thanks for the feed back guys. I will speak to my GP.

[Joolsg]

I agree with the others!

[silkyreg]

Pramipexole is the only medication that works for me but have to say that I havent tried Gabapentin so far. I take 0.35 mg at night and this is ok for me. Also important was to find out and eliminate all sources for secondary RLS like Aspartame, Alcohol, medications RLS, etc.

[Joannebbk in reply to silkyreg]

Im pretty sure mine is secondary RLS. I have narrowing of the spine, deydrated discs and bulging discs. I only get pain in my right side (venus dimple)and right leg and I only get RLS in my right leg and my genitals. I can go months without either pain or RLS but then I have flare ups that also last months. I can get pain without RLS but the RLS always sets off the pain. Im also perimenopausel which really doesnt help. I will speak to my regular GP as the one that prescribed the pramipexole was a locum.

[Hidden in reply to Joannebbk]

This suggests that gabapentin will probably be better for you as it can also treat neuropathy and nerve pain. I use it for both.

You will come across people who find pramipexole works for them. It does work. Unfortunately, pramipexole has a very high risk of severe complications and doctors prescribing it frequently neglect to warn people of these. Anybody supporting the use of pramipexole will not yet have expetienced the complications.

You will also, very often, come across people in this forum who are suffering complications, sometimes without realising that's what they are.

For this reason the three major international RLS organisations recommend that gabapentin or pregabalin are used instead of pramipexole.

This just reinfirces the view that you should stick with gabapentin and avoid the pramipexole.

[fastnfurious6766]

I take pramipexole it works for sure but the side affects are heavy. I take 1 mg nightly

[thorndale in reply to fastnfurious6766]

I was on pramipexole it worked for a while but after I few week I came off it. This made my restless worse and my restless legs legs started during the day. I now take Gabapentin. I have only been on it 2 weeks some nights it works but not every night. I find Co codamol helps when I carnt sleep I take 2 and they so help me sleep.

[Joolsg in reply to fastnfurious6766]

Can you clarify the dose of pramipexole? 1mg?

[Joolsg in reply to Joolsg]

That would be 8 times the maximum dose. I presume the side effects are that the RLS has become more intense, started earlier in the day and probably moved to your arms?

Please have a look at the pinned post above on ‘Augmentation’ because taking that high a dose will inevitably lead to augmentation.

[Hidden in reply to fastnfurious6766]

1mg is in excess of the maximum licensed dose for RLS. That amount is only licensed for Parkinson's disease.

In addition some RLS experts suggest that even the licensed dose is too high as Jools points out.

If you are taking 1mg, you may not be just experiencing "side effects" you may also be experiencing complications. The most significant of these is "augmentation".

In which case the pramipexole is doing you more harm than good.

[Madlegs1]

This is a comment to those who have recommended Pramipexol on this post.

Prami is not an ideal medication for RLS. It is a very effective medication, but not to be recommended.

Some of you are on a dose much higher than acceptable for RLS. That would be 0.25mg or three 0.088mg tablets. And that would only be after titrating up from one tablet at the start.

Anyone who doubts this advice, please research " augmentation".

The only use of Pramipexol in RLS treatment, in my personal view, would be to determine whether an individual actually has RLS. If the initial rate of 0.088 is effective in managing symptoms during the night, then it would be acceptable to continue with that dose, but to NOT increase it if or when it becomes ineffective.

Thanks to everyone who posts their experiences- it is important that we get as wide a range of thoughts on this site to help others in their quest for relief.

Cheers.😎

[Joolsg in reply to Madlegs1]

Agreed

[LotteM in reply to Joolsg]

I too agree with Madlegs (and Joolsg). Forewarned is forearmed.

Another use for pramipexole (or ropinirole), however, is for intermittent RLS (less than 3-4x a week), because it works so fast and effectively. With intermittent use, tolerance and -far worse- augmentation are far less likely, although sticking to the lowest dose still applies rigorously.

[puzzler1]

Hi Joanne,

Knowing what I know now, I would resist taking the Pramipexole. It may be ok at the initial dose, 1 x 0.088 tab but the day you have to increase the dose to obtain the same relief, you need to step away from it.

I was only ever prescribed Pramipexole (Gabapentin was never mentioned) and I found it a great relief. The doctor upped the dosage when I found it wasn't so effective until I got to the max allowed of 6 tabs. When it worsened, the doctor just said 'well that's the max you can have'. Nothing else, and then I suffered horribly ever since until I found this forum. Frankly I'm stunned that Pramipexole is still prescribed unless the full ramifications are explained to the patient.

I would say it's ruined the last 6/7 years of my life and I'm suffering badly with withdrawal symptoms trying to come off it. I now only take 3 tabs and currently going through hell.

I see you've received lots of good advice from more experienced members but I just wanted to add my bit.

I hope you find some relief soon.

Also, looking at your post about menopause, I think now that that was what made the sea change for my RLS. My symptoms worsened considerably. And I think they are still affected by my monthly cycle even though I'm 74.

[Bks429]

My two cents: I have been on 600 mg gabapentin and .25 of pramipexole for a couple of years with less and less relief over time. At my last visit with my Neuro he checked my ferritin which was .29. He suggested I take iron, which I have been, and I almost feel normal. Since July 6, I have had only three nights when the enemy returned! Please, please get your ferritin level checked!! My ferritin is being rechecked next week, and then I’m going to begin to try and wean off the pramipexole.

[Bks429 in reply to Bks429]

I’m 71, and yes, I too felt like I had NO life anymore!

[kylieah]

I was prescribed it years ago and ended up throwing them out. A few years later another doctor prescribed it again and I tried it again hoping it would work and I got the same result. It just does nothing.

[Ranjits]

I am taking premipoxle for 8years first few years work Nicelybut now I got augmention I will try to wean off now neurologist give me some patch’s don’t know which one once I got the patches I will let you know the results . Weaning off premipoxle is hard

[BLUES60]

Don't take it, the negatives far out way the positives, a miracle at first but my god you will pay in a terrible way