The Dangers of Taking Pramipexole for An Extended Period of Time

I am 76 and have suffered with RLS most of my life. I have taken Premipexole two different extended times in the last 20 years after my well intended Dr's prescribed this med to give me relief from this diabolical disese RLS.

In my case I was so desperate for some relief I think I would have taken anything.

Today I had my simi-annual appointment with my RLS doctor at a teaching University. He is a world leader in researching RLS and the origin of our illness. We had a very frank conversation about the subject med.

I will make my point about what I learned but first let me give you some background of my experience.

I have taken Premipexole in daily doses of up to .625 MG which is not considered a heavy daily dose.

I have experienced one prolonged augmentation and the pure hell of the resulting withdrawal. I have also landed in the ER two times because of the meds effects. On one occasion I spent three days in the hospital because of a low sodium blood count because of the long term effects of Pramipexole.

My doctor and I worked together to resolve my addiction to Pramipexole and I am not totally off of it as I currently am taking .124 MG X 2 a day. So I am not totally out of the woods as far as getting totally off of the drug. I don't know if I have the currage to totally deal with the effects of totally stopping the drug.

Now to my point. He told me that many of the thinkers / leaders in the RLS field are beginning to belive that prescriptions of Pramipexole for RLS has been a mistake.

I just thought that I should pass this information on to my fellow suffering RLS patients.

Where we go from here? They need more money (about $1 millon) for researching just one current study to help find the cause of RLS. We will never find a cure without more research.

Someone needs to step up and show some leadership to find the cause and cure of RLS

4 Replies

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  • Yes it is true many of the international RLS experts are moving away from the Dopamine Agonists as a first line treatment.This includes not only Pramipexole (Mirapex ) but also Requip ( Ropinerole ).

    Sinemet (Carbidopa Levodopa ) is now not recommended at all for daily use.

    Of all the Dopamine Agonists meds the Neupro patch is considered the best option as it is slow release.

    Doctors in the past even the experts were not aware of augmentation but as this problem has become more apparent then new lower recommended daily doses are being advised

    Many of the experts in the States prefer Methadone but the UK still won't prescribe it (I haven't come across anyone in the UK getting Methadone prescribed, if any member knows differently I am keen to know! )

    Painkillers are becoming more popular with the experts as well as the anticonvulsants Gabapentin and Pregablin.

    However I would not dismiss the Dopamine Agonists completely, I do very well with the Neupro patch but I wouldn't personally go back on any fast acting dopamine med

    Doctors need to be aware when prescribing Mirapex ( Pramipexole ) and Requip ( Ropinerole ) of keeping the dose low and regular monitoring to watch out for signs of augmentation.

    Back to your scenariohas your doctor prescribed you a back up med to help you get off the Pramipexole? Good luck

    Pipps x

  • Jk4832 thankyou for that information? I will rambert to ask neurologist when I see her about it. Good luck to you regarding comming of the pramipexole cheers shaft 1952

  • My thoughts exactly. I. Am a nurse, I moved to be near my parents last year. My father had been on pramipraxil for many years and looked like a man with parkinsonism.

    It took a while to detox him buhe has lost the parkinson traits.

  • Re Pramipexol - Many people confuse the dosage for RLS and Parkinsons- they are at very different levels and as such have different side effects.

    The highest dose for rls should not be more than .25. and should be started at .088 ant titrated up by that amount about every 3 days until relief is experienced or max dose achieved- at which point supplementation with gabapentin or lyrica should be considered. Again starting at lowest possible dose.

    Again- consider all possible triggers at the same time - which may be confusing any assessment .

    Cheers.

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