Pramipexole

[Carpetbagger]

Firstly can I say so many grateful thanks to Sue and Jools for their valuable help and to everyone else for their stories on this forum. When I started along this journey I didn't have much information about RLS and drugs involved. Now I feel I've have learnt so much and am capable of holding my own with doctors who are sadly lacking in this subject. As I mentioned when I joined I have been on pramipexole for about four months at minimum dose, taking one tablet at night (.088mg) and 1/2 tablet late afternoon. At the moment this is working well but I am desperate to get off it. One locum at the surgery (we have no permanent doctor) had no time for discussion but I saw another locum last week and he was much more open to information, but admitted he had no knowledge of most of it. However it seems I have been referred to a movements disorder clinic but the doctor was very vague. I will wait a couple of weeks then make enquiries further and if nothing comes about it I am going to contact Dr O'Leary privately at Ross Hall, Glasgow, after reading about a forum member who also went to him a couple of years ago. Going back to the pramipexole, every day I have suffered fog brain, balance problems and headaches since starting on this pill. It would be really helpful to know if anyone else has suffered like this. Thank you.

[SueJohnson]

Those can definitely be side effects of pramipexole.

[Carpetbagger in reply to SueJohnson]

Thank you for replying so quickly.

[Kailua808]

tell your doctor to give you 1.5 mg of Pramipexole twice a day, one in the morning one at night and also 500 mg of Keppra one in the morning one at night. Your RLS will never come back unless you miss a pill..

I’ve been on his medication for a year from my doctor who is a movement doctor at the University of Hawaii and it’s been amazing for me. My life has changed.

[Carpetbagger in reply to Kailua808]

Thank you for your help. I feel disinclined to increase my dose of pramipexole as Im trying to get off it. I’ve not heard of Keppra.

[Madlegs1 in reply to Carpetbagger]

Keppra is an anti seizure medication - mainly for treatment of epilepsy. It can promote suicidal feelings and should be closely monitored and not used long term.

[SueJohnson in reply to Kailua808]

Hopefully everyone on this forum will know better than to follow your advice as most are trying to get off DAs if they are on them.

[Carpetbagger in reply to SueJohnson]

Yes indeed.

[Kailua808 in reply to SueJohnson]

Tell me Sue, haven’t had RLS? Do you still have it and if so, what medication are you on because it seems that you seem to know so much about it. I’m only talking out of experience and lived with and what I was on. I didn’t increase dosage in one day. I started at a very low dose and increased thru the years. Unfortunately, just Pramipexole , even at 3 mg was not enough for me, which is why they had to add the. The keppra is amazing. of the two has helped me changed my life..

[SueJohnson in reply to Kailua808]

I have RLS and augmented on ropinirole and my RLS is now controlled by gabapentin.

[LotteM in reply to Kailua808]

1.5mg is THREE times the maximum dose for pramipexole when prescribed for RLS. Twice a day that dose, hence 6x the max dose. No wonder (?) it helps, but I fear not for long.

See the replies to your own post

Btw, pramipexole=Mirapex or Sifrol.

[Carpetbagger in reply to LotteM]

Yes frightening indeed.

[SueJohnson in reply to Kailua808]

LotteM has a good point! By definition you are already suffering from augmentation.

The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day (normally they occur only at night so you don't need to take it in the morning) or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.

[Kailua808 in reply to SueJohnson]

I understand that you feel that I’m taking three times the Pramipexole but after having almost 30+ years of it I finally came to a plateau. Understand, yes, I started on Ropinarole just like everybody else and was on it for years. It never helped me. I was augmented. It was suffering all the time never sleeping for years. Then one day my new neurologist sent me to the pharmacy with a prescription for Pramipexole. It’s been so many years. I can’t tell you what the dosage but it was low I worked myself up to a higher point which is 1.5 I was still becoming Augmenting and because that is why she added the keppra mix of the 2. Today I don’t have RLS so yes I some days I do have it but it’s not as bad as it used to be and so I don’t sleep anyway because so many years of not sleeping has giv been me insomnia, which I still haven’t been able to keep under your control yet.

I think you were rude to talk like that about my doctor. They’re only out there to help us in. They’re doing the best that again given the fact that my RLS is so severe, I feel that she’s helped me immensely today. I’m sleeping about four hours a day now which is more than I ever had in the last 40+ years

[SueJohnson in reply to Kailua808]

I simply said he was wrong and badly out of date. That's hardly being rude.