Hello y'all,
I've been taking 0.0625 mg of Mirapex for the last six months. It has been effective but reading about these medicines I am scared to death that it will be a spoil sport for me in the future. What should I do? My neurologist asked me to continue with Mirapex while its effective and according to him I shall not be facing any problems.
Keep the dose as low as is effective in controlling 90% of rls . Main thing is to get a reasonable nights sleep.
Maybe take a couple days holiday from the Mirapex every fortnight or even week.
When it doesn't seem to be working is the time to stop. Taper off slowly and start taking Gabapentin/ Horizant or Pregabalin ( in consultation with your dr)
You may well get quite a few years relief with this .
Naturally, get your ferritin level checked, and avoid any possible triggers.
It's all been written about extensively here.
Good luck.
Does everyone eventually have augmentation with these kinds of drugs ?
Not necessarily.
Rls is an extremely individual experience. Everyone has a different reaction to drugs and has different triggers that set their rls off.
You will only find your own "instruction book" through experience and keeping a diary.
All the best
on your quest.
( The lousy poetry is free) 🤣
Let's just hope that I don't augment ever. The med works fantastically well but it shouldn't become a problem in the future.
While you are right to treat the advice of your neurologist with circumspection, I would agree absolutely with Madlegs. If you stick with that low dose, the drug might be good for you for a long time, particularly if you build in regular breaks. I’m not sure you would need to break as often as once a week. The severity of your symptoms when you take a break will provide an indication of whether augmentation is taking hold. If the symptoms go through the roof it would be worth taking a longer break but if they merely revert to pre-pramipexole levels then you’re probably all right for a while. You might get away with a break of two or three days every month or so. It might be worth finding something that you could use to supplement the pramipexole if necessary (better than increasing the pramipexole) and can use for relief when taking a break. I use Kratom for this but tramadol or codeine might also work if you can persuade your GP to it.
I would not increase higher than 0.125mg on any account, however.
It’s very important to ensure your serum ferritin is high so get it tested. Get the actual figure (not just that you are ‘normal’) and if it is below 100 start a supplement. There is a link between low iron levels and augmentation on pramipexole.
Breaks as in ? Stop them without any side med ?. Does that prolong the period for augmenting?
I don’t think there’s any evidence about most effective means of avoiding/deferring augmentation but I suspect keeping dose low and taking breaks (as in stopping the drug completely for a while) should help, particularly as there is some evidence to suggest a link between increasing dose and onset of augmentation.
As to whether you use an alternative medicine while taking a break or not, it is a question of whether you can find a med that works for you in that way. I use Kratom but not everyone is happy to use it.
Is there a certain time duration when people start augmenting?. Like months or something I can think of ?
No. It is very individual. Some people augment within days - particularly if they previously augmented on a dopamine agonist drug while others can go for years.
HI Heatherlss. I'm really surprised that you're only taking 0.0625mg as I didn't know that you could get tablets with that small a dose. I suspect you have 0.125mg tablets and you're cutting them in half.
Just to reiterate what Madlegs and involuntarydancer say, if the Mirapex is working for you at such a low dose then there's no harm in carrying on with it for now as they've suggested.
I'm afraid to say that once you've started on medciation for RLS, you'll most likely be on medication for life, so while one is working, make the best of it.
okay that just scared me even more. for life ?.
Yes it it is a bit scary. There is no "cure" for RLS. If your RLS is so severe that you need medication, the only medications available just relieve the symptoms. They don't get rid of the RLS, if you stop taking the medication then the symptoms come back.
It does sound scary to think that you have something for life, but the good news is, you will have a life. I've never heard that RLS shortens your life.
Unless your RLS is very severe, it may be a bit of a juggling act and some trial and error, but if you get medications that suit you, with some relatively minor modifications of your lifestyle, you can achieve a reasonable quality of life.
Alternatively you can try all the non-pharmacological remedies for RLS that you might read on here which in my view vary from those requiring exhausting self -discipline (various controlled diets) to the bizarre (bar of soap in the bed).
Some reasonable items in the middle, but I have been taking medication for 12 years now and my quality of life has been affected more by other health problems than it has been by RLS. Much more scary! I just have to religiously ensure I take the medication every evening without fail and although I'm not totally symptom free, it's tolerable.
There have been times when things haven't been so good, but I've got through them. This site has recently got me through a bad patch.
So I'd say it's OK to be concerned, but there's no real need to be scared.
That makes sense. How do you define severe though?. When I have RLS, it is mostly for an hour or two when I go to bed. Sometimes it extends till 2 am and post that, I do doze off till say 6 or 7 in the morning.
I guess that depends upon how it affects you . I put up with 6 months of no sleep from about 2-5 am, every night , I was a teary zombie. That was severe enough for me. If I wasn’t working I may have coped better, but I suspect not. Sleep is massively important
There's basically two ways you can judge severity. One is making a completely subjective judgement about how badly you think it's affecting your life. In that case, what might be severe for one person might only be moderate for another.
Another way is by using a professional validated scale like the International Restless Legs Study Group Rating Scale
You can find this at the following link
This still involves subjective judgements however, but then RLS is assessed by its symptoms and symptoms ARE subjective.
You have to be careful about subjective judgments in relation to sleep. It's not unusual for people to think that their sleep is poorer than it actually is, or vice versa (as measured by somnography studies). Apart from undergoing a somnography study you need to consider if you have the signs of sleep deprivation. which include -
Drowsiness or suddenly falling asleep during the day.
Moodiness
Irritability
depression
poor concentration
forgetfulness
Loss of deep sleep can lead to delayed wound healing and increased risk of infection. Loss of dream sleep can lead to mental health problems.
These don't just indicate poor life quality of life, they can be dangerous.
There are various insomnia rating scales you can use. You can Google them.
Ultimately, you have a choice. If your symptoms are only mildly annoying, you can either just put up with your symptoms or you could try all the non-pharmacological remedies there are. If they work well enough for you, then that's fine.
If they're not good enough then the next step is medication. It seems you've already started that. You could try stepping back, but probably once you've started, it might be difficult to step back.
To reiterate, you're on a very low dose of Pramipexole, as long as you stay on a low dose, your risk of augmentation will remain low and although very common augmentation, is not always inevitable. Similarly, another serious consequence of Pramipexole is Impulse Control.Disorder (ICD) and similarly your risk is low when on a low dose. The risk of ICD is lower any way.
If you want to further reduce the risk of augmentation you could switch to an alternative medication that is less likely to cause augmentation, at any time. At your current dose of Pramipexole this should be relatively easy to do. If you increase the dose of Pramipexole at any time it will get harder to switch.
Overall, in reiteration, there is no cure for RLS and it tends to get worse as you get older. It tends to be that whatever treatment you try has both benefits (i.e. relieving your symptoms) and costs, that is side effects ( depending on the particular treatment), you have to weigh this up and if the benefits outweigh the costs, you're winning.
I'm afraid the situation and hence the balance might change at anytime, so for RLS suffers it's perhaps best to accept that whatever's working for them at the time IS working and not to worry about the future too much.
Sorry to say, you don't really have a choice. If you have RLS symptoms that are causing you misery and the only way you can get relief is by taking medication, then you need to take medication. You can choose not to, but you might then find your symptoms are causing you hell, so it's not really a choice.
You say you are only having symptoms for 2 hours and only sleeping 4 - 5 hours a night. Is that since taking the Pramipexole or was it like that before? Although you might be happy with this, that low amount of sleep might have more serious consequences than taking medication in the longer term.
A final note, insomnia is caused by RLS. Some of the insomnia is due to a failure to fall asleep due to the RLS symptoms. However a second form of insomnia it causes, is a failure to maintain sleep, i.e. early waking. Dopaminergic agents e.g. Pramipexole can themselves cause early waking.
If this is the case there are alternatives to Pramipexole which perhaps aren't quite as effective for relieving RLS symptoms, but are better at helping sleep.
It's not easy to accept long term or debilitating conditions that are life changing, but as it's not possible to find a cure, it's better to accept the condition and what compromises you have to make rather than struggle with it.
You will find lots of support in doing this, on this site.
I should probably stop taking the medication for RLS if the medication is good only in the short term
Yes you could stop taking the Mirapex if you wished. You would most probably experience some withdrawal symptoms which would wear off after a few weeks.
Since you are taking a dose that is actually lower than the recommended starting dose your side effects should be minimal.
Then you would return to where you were before you started taking the Mirapex.
This would be the same situation you were in that prompted you to seek treatment for your RLS.
Your other options include either
stopping the Mirapex and researching non-pharmacoliogical remedies for RLS
or
switching to another RLS medication which is known to have less proabablity of augmentatiion
or
Carrying on with Mirapex and never increase it above 0.125mg and stop worrying about what ifs or maybes that might not happen for years or never.
The only time we have is now and if your present now would be better if you had no RLS symptoms with currently no negative consequences, I think that's good.
If you're happy however to have a less positive experience now suffering with some RLS symptoms because of some imagined fears based on the low probabilty of consequences, that's also good. It's down to what you feel happiest with NOW.
You have a point but I just happen to be that kind of person. When you say withdrawal symptoms, what kind of symptoms would they be and for how long ?. Thanks
I don't have the experience to answer that, I can say is that in the past, when I have forgotten to take my Pramipexole at the usual time, within 3 - 4 hours I have full on RLS symptoms, twitching of legs, arms and shoulders all night. Every time I attempt to lie down uh uh. So no sleep whatsoever and once it's started taking the Pramipexole makes no difference.
However, that was when I was taking 12 times as much as you're taking and had been taking that dose for about 10 years.
That is a different scenario to yours, the "withdrawal effects" you might experience would probably be normal RLS symptoms. They might possibly be slightly worse than they were before you started the Pramipexole or they may not be. As you're on such a low dose I imagine they would fade very quickly OR they may not be withdrawal effects at all just a return to how you were before you started on the drug. In that case, what you think might be "withdrawal effects" may be permanent. It's very variable between people.
What was your experience before you started taking Mirapex and have you ever missed a dose? If you have missed a dose, what happened?
If it's true you're only taking half a 0.125mg tablet = 0.0625mg (the zero after the decimal piont is absolutely vital! ), then you could just stop taking it and see what happens.
Hi. I indeed do take 0.0625mg. i was told to take 0.125mg but after a month or so, I cut the dose into half and have been taking the same ever since.
My oh my, you seem to have a whole lot problems with the med. You used to take 0.75mg for 10 years. Didn't you augment ?
Yes I did, now I'm weaning off it.
I'm sorry. Did you used to take 0.75mg from the beginning. When did you augment?
I augmented because I was taking 0.75mg which is a ridiculous amount, I now know.
However, you're not taking anywhere near that dose.
Before I started on Pramipexole, I was unable to get to sleep because of sensations and involuntary movements in my legs. I only vaguely remember it now, but I was getting maybe 2-3 hours sleep a night and weekdays I was getting up at 6am to go to work. This was every night.
After seeing a neurologist I was prescribed Pramipexole at a starting dose of 0.125mg, i.e. one tablet and it was miraculous, absolutely no RLS symptoms the first night I took it.
I was told I could gradually increase the dose up to 6 tablets. and I did this quite quickly.
What was your RLS like before starting the Mirapex?
It was similar with me. I have had nights when RLS was minimal and I went off to sleep without noticing any issues. On other nights, I just couldn't sleep because my legs were always keen for some tingling.
I take 0.0625 mg and on some nights, I do have to take another half which makes it the regular 0.125 mg. Case in point, in the last week, twice I've had to take another half. I had one sleepless night this past week when I took 0.0625 mg and it didn't work obviously. But since it was 4 am already, I figured why take the med.
RLS is ruining my life!
Wondering if dad has RLS instead of PD (or both?). Any RLS indicators here?
Rls med
Taking iron for RLS; Requip better than Mirapex?
RLS and Pain
