Has anyone been taking Mirapexin 4x 0... - Restless Legs Syn...

Restless Legs Syndrome

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Has anyone been taking Mirapexin 4x 0.88mg for more than 8 years?

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I have only just found out that Mirapexin should only be taken in the short term. As I have been on them for so long they are now causing more unwanted symptoms such as compulsive shopping, gaming and even some gambling which I have never done before. My consultant has told me to come of these tablets with the help of clonazapam. I have tried several times to cut them down but it is dreadful. Help!

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jumpylegs profile image
jumpylegs

Its a shame that your mirapexin is causing you to have these specific side effects.

However, if such a side affect did not happen, I think that there is no reason for mirapexin to be given only in the short term.

in reply to jumpylegs

I agree, Mirapexin was like a miracle to me when I was first prescribed it by a consultant neurologist and excellent for short term use. But over a long period of time I increased the dosage as it was not working so well. It is unfortunate that I am now battling to come of of it. All I want is a good replacement. Not enough research has been done into the long term use of certain drugs for the treatment of RLS. I've always been a bit of a shopaholic but never into gambling. Luckily I've not spent much....yet! I have been to see my GP and she is very sympathetic and referring me to another specialist. I like your name, by the way, I always refer to myself as jumpy legs!

There has been lots of talk recently about taking the dopamine agonists med. which are Mirapexin(pramipexole) Ropinerole and the Neupro Patch. They for most cause augmentation, which means they stop working and you have to up the dose to get the same relief but that only works for a while. You are unfortunate to be getting those side effects.

The higher the dose then more chance of getting the side effects that are stated in the leaflet, but it can be an individual thing, just depends on the person.

Trying to get off the dopamine agonists are a nightmare , which you do need to do because of the side effects its causing. Its not something i have had to do as of yet, i also dread the thought if and when i have to. You could ask the doctor on the website rlshelp.org he is a specialist on RLS, you can email him for advise on getting off the Mirapexin, altho i think he mostly recommends using Methadone to get off the dopamine meds. which you will not get here in the UK. but he may suggest something else which can be used here in the UK.

jigglylegs profile image
jigglylegs

I have been on 3 tabs of Mirapexin for about 6 years and fortunately have not had the compulsive shopping/gambling but I was going to ask if 3 tabs was a high dose. I have tried to reduce them even by half a tablet and I get the same result - absolute nightmare (at least it would be a nightmare if I were asleep!). I would really like to get off them but when I asked my GP, not the one who prescribed them, he would not give me anything to take at the same time. I can't get off them without something to replace them.

Sorry to hear that your doctor wont give you something to help you get off the Mirapexin, he obviously doesnt understand how bad it can get when trying to stop them, you get withdrawals from not having the dopamine, even just dropping by 1/2 a tab will make your RLS go nuts. Can you see the doctor who prescribed them, he might know what happens when stopping them... The leaflet will tell you if 3 tabs are high...depends on what dose the 3 tabs are as you dont say. Are you getting augmentation...? is that why you want to get off them...

Pete-1 profile image
Pete-1

Hello Jenor,

If you look at the patient information leaflet that comes in every box you should see that the dose you are taking is 0.088mg not 0.88mg. Now 4x0.088 = 0.35mg.I have been taking Mirapexin for around 6 years for Parkinson's Disease (PD). My dose is 4x1.06mgs i.e 4.24mgs per day. Generally RLS is treated with much smaller doses than when treating PD

What I am trying to say is that there is plenty of scope for increasing your dose before you would be taking a high dose. I was told my 4.24mg / per day was the maximum allowed. I believe this maximum is set at this value because of the risk of compulsive behaviours.

As a PD sufferer, if I stop the Mirapexin then that is when I get RLS,, as a symptom of PD, really quite badly. For example I remember getting RLS twinges in both arms and legs simultaneously about every 15 seconds. Sleep was impossible.

Many people report unhappy episodes with Mirapex and I must admit I'd quite like to change this for an alternative. The main problem as I found when trying to stop taking it once before is that the withdrawal is very unpleasant. Not only allowing RLS but I felt generally unwell in a strange way that I find impossible to describe.

Incidentally don't suddenly stop taking Mirapexin. You have to do this slowly over several weeks rather than days. I suppose being on a not very high dose you would be able to wean yourself off them a bit more quickly. |The reason for not stopping suddenly is that you run the risk of getting whats called "Neurleptic Malignant Syndrome". NMS is very rare but it can be fatal. So if you stop do so with the guidance of your medical person.

Best wishes

Pete-1

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