Hello
Just introducing myself and hoping to learn from others experiences
I'm 26 and have suffered with RLS for as long as I remember on and off. The last three years it turned more severe. For those past three years and currently I take:
X3 - 180microgram pramipexole at night
X2 - 30mg co-codamol as and when needed. (Usually at least twice a day)
Your pramipexol dose is too high- I suspect you have been upping it over the last few years. This has led to augmentation. The highest dose rate should be.25 for rls.
You need to get off the Prami slowly with the help of a knowledgeable Dr. And look at an alternative medication.
rlshelp.org or rls-uk.org wil give you help on how to go from here.
Good luck.
I agree that 3 x 0.18 mg is a too high dose. However in my experience it is not necessary to get rid of pramipexole completely. Suffering from augmentation I gradually reduced my dose from 2 x 0.18 to 1 x 0.18 mg and this is enough now to prevent my legs from ruining my sleep. Be ware that getting off or reducing prami is a hell of a job. I needed opiods for some weeks to be able to cope.
Hi rosepod5
If you do not know much about augmentation this link may be of help to you:
HI there, sorry to hear of another sufferer of this dreadful, live changing, condition. I am on 2 x Pramipexole and 3 x 30mg codeine tablets a night and doing great a present. I saw a new Neurologist last week - will post about this separately - and he said that there would be no issue going up to 3 x 180mcg. I was taken off the co-codamol and it was thought it was only the codeine that might help with RLS, so why not ask about this. Of course we all have different views and advice to give, but don't give up on the Pramipexole yet. Have you had good results from it previously? Take care.
Thank you for the response. As I'm sure everyone can relate to it, I have good and bad days with my RLS. Without failure it will always start becoming irritable about 6-7pm but I'm usually able to cope until bedtime when I take the pramipexole and co-codamol.
On my bad days i suffer with the painful type of RLS and being an engineer on my feet all day I rely heavily on the co-codamol taking them 3-4 times a day which does ease it.
I would love to know what the trigger is when i do have my bad episodes.
Pramipexole has been a massive help to me at night but during the bad episodes I do find myself waking at 1-2am needing to take co-codamol again.
It was hard for me to try and get a GP to diagnose me. I would return from work and cry all the time from the pain/discomfort and lack of sleep. It was the referral to a neurologist who advised the pramipexole.
I often wonder whether this condition is going to stay with my forever now. The symptoms of RLS happen everyday for me without fail and can't remember a time when I didn't have it.
Hi, I have been taking 0.26mg Pramipexole prolong release tablets for a while and find them good. I take one roughly about 2pm and another before I go to bed, I will also take 1 x 30mg co- codamol when necessary. Ask your GP for prolong release tablets. I have had RLS for years and tried just about anything they can throw at me. Ok with these My Neurologist suggested them. good luck.
Hi Rosepod, I'm sorry to hear that your rls has got worse in recent years, especially when you are so young. You do need to be very careful with pramipexole. It is fantastic at medicating the condition ... until it isn't and then it gradually starts to stoke the symptoms and they get worse and worse - this is augmentation and once it sets in it is hard to overcome. The best way to avoid it is to keep the dose of pramipexole as low as you can and use other methods to treat the condition when low dose pramipexole is not enough.
That said, be careful of co-codomol as my understanding is there is paracetamol in that. In the vast majority of rls sufferers paracetamol does not help with symptoms - it is the codeine that helps. It would be much better if you could get a prescription for codeine or even tramadol without the paracetamol as you don't want to be taking that stuff for no good reason.
It might be worth getting your iron levels checked - a simple blood test to get the serum ferritin level which you can usually get done at the GP surgery. You need to get the actual number - being told it is 'normal' is not enough. The latest research in the US (Johns Hopkins university is a world leader in rls research - you can see a lot of their findings on their website) suggests a very strong link between iron levels and symptoms in most (but not all) sufferers. Getting my iron levels up from 29 to 79 using oral iron has helped enormously. Optimally they should be over 100.
It is very important to educate yourself about your condition. Most neurologists do not know very much about it and I am afraid that it sounds as if yours falls into this category if he/she is recommending that level of pramipexole. You will find a lot of information on this and other rls forums. You should also look at the Johns Hopkins website and that run by Dr. Mark Buchfuhrer (another world expert in rls) - rlshelp.org - especially the questions and answers pages. Rls-uk.org is another.
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