hi all, i'm a fellow sufferer and I was prescribed Pramipexole. Has any one else had this medication. It is fantastic and has stopped the horrific symptoms.
PRAMIPEXOLE: hi all, i'm a fellow... - Restless Legs Syn...
Restless Legs Syndrome
I'm on it too but it's starting to become a lot less effective
Yes pramipexole together with pregablin helps me .but not always but try and avoid more cause i started with one now one and a half .told take two but i wont as it will go up and up.
I took one vitamin b12 tablet and one folic acid tabletdaily. three days later i'm cured. I stop taking them and my restless leg comes back. I've proved this many times and it DOES work. x
I was on it for nearly two years, sadly its effectiveness wears off. In fact over time and with increasing dose, it ends up causing the symptoms its supposed relieve. An effect called augmentation. Pramipexole is primarily a Parkinson's disease drug, its use for rls is a fortuitous accident.
Dont sit back thinking you have a long term solution, get your doctor to start investigating your iron levels. Try iron tablets like ferrous gluconate and other essential minerals like magnesium and copper. I am also a Crohn's disease sufferer and that has resulted in me not being able to absorb many vitamin and mineral tablets. I had to have blood infusions to sort me out.
Sorry if this sounds like bad news on top of your good news. Im using every opportunity to get what I believe is the latest and best treatment for rls out to all sufferers.
When taking any of the dopamine meds, its best to keep the dose as low as possible. The RLS experts are now recommending no higher than .25mgs for Pramipexole. That is because of augmentation. If the .25mgs is not working then you need to change to a different med. We get members on the forum all the time, saying their dopamine med is not working and their RLS is worse. The dopamine meds are good for RLS BUT just keep that dose low.
Yes I've been taking pramipexole since November and i call them gold dust lol fantastic for rls, stops the urge to keep moving just don't stop the ache and pain but i can live with that lol x
I have been on Pramipexole for about 14years now and it works most of the time for me (approx. 25out of 30 days). I have always referred to it as my miracle drug. I have increased over the years from one .25 a day to 1mg a day ( in the early evening ) I know this is a lot but it works. My issue with Pramipexoleis is in the last couple of years is the side effect. 90% of the time it makes me VERY sleepy, uncontrollable yawning, stuffy nose, watery eyes, and sometimes chills. This is very annoying and I have an appointment in a month to see a neurologist.
I would classify my RLS moderate to severe in legs and arms. It is genetic effecting my g'ma, mother, sister and brother, but mine is the worst of the bunch.
On the plus side I am on a diet for my diabetes and have eliminated sugar and caffeine for the last 3 weeks and my RLS has improved greatly. No symptoms during the day or before I take my Pramipexole, which is also working well.
This is such a crazy crazy problem! What works for one doesn't work for another!
Be very cautious about driving if pramipexole is making you so sleepy. There are many anecdotal accounts of people just dropping straight to sleep without warning when on a high dose - which this is.
You should also be very alive to the possibility of compulsive behaviour - shopping, internet shopping, gambling. This is a surprisingly common side-effect of higher dose pramipexole and difficult to recognize in yourself.
I would consider trying to bring your dose down using a different med to supplement if necessary. As you are probably aware already, that dose is well outside the recommended range and it is not a drug to mess around with.
I appreciate your concern and I am careful when I start feeling what I call an allergic reaction to Pramipexole. I know I need to change my meds and I am seeing a neurologist next month. I have tried gabapentin and Carbodopa over the years but to no avail. I cannot go on any type of opiods so....
I didn't mean to sound too negative. Pramipexole was a wonder drug for me - until it wasn't. I know that eliminating it brings a whole new set of problems with finding a replacement regime that is tolerable. I stopped pramipexole about a year ago but I do still use neupro which is a slow release version of ropinerole from time to time. My understanding is that while it is still possible to augment on the slow release dopamine agonists, augmentation is slower to occur, particularly if the lowest dose is maintained. This might be an option for you/your neurologist to consider.
I believe that in the US experts in rls are currently doing research into why dopamine agonists cause augmentation. For all that I have experimented widely in the last year and managed to find a tolerable regime for myself, I would go back on the dopamine agonists like a shot (at a low dose), if I knew that I wouldn't go through the misery of augmentation again.
I'm delighted that your diet is working for you. I too have found that consuming sugar irritates my rls, especially towards evening time and in fact it is better for me if I don't eat much at all after about 5pm and go to bed feeling slightly hungry. It has also helped me shed a few pounds!
I have been suffering from RLS for about 6 years , I started off by taking one 0.088mg pramipexole every night after 3 years I increased it to two a night but I can go for a week then miss a night without noticing any lack of control. Last year I also started using folic acid tablets 5 mg one a day and it all seems to work quite well, I must add that I do take one tramadol each evening to help my back problems.
Four years ago I had a total knee replacement and they fitted me with air compression boots after the op, these boots applying pressure then releasing took my mind off of the figgetty feet problem. Even thought about buying a pair for myself
I'm with you. I've been taking the Australian version Sifrol for 6 years, completely stopped the symptoms. However since joining this group have learnt so much and an heading the warnings regarding augmentation. Glad you have found relief, I've suffered from chronic RLS since childhood and wasn't diagonised till 48. Thought I was the only person in the world that had this. Had never heard of RLS. Stay strong and don't allow the dreaded augmentation to take over.
Good luck x
Ohh forgot MOST important thing .... watch the side effects carefully. They can strike without you realising it and by that time it can be too late to rectify.
yes for now. if you're not careful it will come back and bite you!
I have just been prescribed it yesterday. I took my first one last night and no rls. I also take clonazapam at night but I still get very little sleep