I've just been reading some posts concerning this drug. I'm very dubious of going onto a drug only to be "weaned" of it at a later stage....and for the side effects seem to be dreadful!
How have others got on with Mirapex?
Mirapex: I've just been reading some... - Restless Legs Syn...
Mirapex
Written by
Eileenk
To view profiles and participate in discussions please or .
Read more about...
32 Replies
•
Getting off of the dopamine agonists (Mirapex) and pain killers can be a nightmare of unbelievable proportion. With that said, if you go into it with the understanding that it is a lifelong commitment and you have no other choice, then you can shuttle back and forth between drugs and probably have a very good quality of life. I consider all medicine sacred, including Mirapex and pain killers. From a clinical perspective, the suffering from RLS is unacceptable. You must find something that works for you and never ever beat yourself up for taking "drugs." I do not like taking iron and feel it is probably doing my body more harm than good but for now I have no choice. And I think it's better than Mirapex but not by much. I truly believe that science is closing in on the RLS mystery. When that happens and they come up with a safe sustainable treatment then you and I can stop whatever we're taking and switch to that.
in reply to
There are other drugs to help you to go through this.. both opioids and dopamine withdraw..
Hi, I was on mirapex for many years without any side effects.i then got augmentation and had to come off it.Coming off is hard as your legs go beserk and I needed strong painkillers to do it.Ropinerole is the same class of drug as is Neupro patch they are dopamine agonists and coming off any of this class of drugs will for almost everyone. I do not regret taking mirapex as it gave me many good years however if I had my time again I would try strong painkillers first.I am now doing very well on Neupro patch but I know if I have to come off in future it will be hard but my quality of life without the medications is very poor.To be honest I often feel like choose your poison. X
Eileen if you really dont want to try the dopamines you could ask about gabapentin or pregablin they help some people x
One more thing, whatever you do or take, try stopping the sertraline for a short, safe period of time and see what if any improvement in RLS symptoms you. While taking the "forbidden" medicines I had restless body. It was ridiculous. It was in my arms, my chest and my head. I would contort my body like a snake to no avail. I read on the internet about the iron (this is now several years ago) and it actually relieved all of RLS symptoms even while on the forbidden meds. I got tired of taking the iron (I really am not a fan of it) and did more research. That's when I found out about the forbidden medicines. My RLS went from a 10 plus to .5 overnight.
in reply to
We don't know how serious the depression is so dont stop the antidepressants without a doctor's advice, again you again you will have to be weaned off them x
in reply to
Pippin is absolutely correct Eileen. I made the dangerous assumption that you are an "insomniac" whose doctor wants you to cut back on sleeping pills and take Zoloft instead. Plus the way you describe yourself as an "insomniac" rather than a person with a sleep disorder or fibromyalgia I made the assumption that your insomnia is due to anxiety, either generalized or the fact that you chase sleep like a cat does with its tail. If I am right, which I probably am not, I agree with your doctor about cutting out sleeping pills. Treat the anxiety disorder rather than a sleep disorder which you don't have. I think best in class for anti-anxiety medicine is a small, non therapeutic dose at bedtime of around .5. Many doctor prefer to treat anxiety with the SSRIs but they are not RLS friendly and I believe are overkill. .5 of klonopin is equal to a few ounces of alcohol only it will not prevent you from going into deep sleep as alcohol tends to do and may actually help you get there.
in reply to
Sertaline is in the class of SSRI antidepressants so probably is aggravating the RLS.However we do not know members personal circumstances so need to tread cautiously. We are not medics so always best to check with a doctor before starting /stopping any prescribed medications
in reply to
Paxil was working so, so hard against me..going off of it stopped my RLS.
It took time - a good 4 -6 months...My rls is gone (knocks on wood) all but in my back and neck.
Cannot stress enough that if you must suddenly get off of a dopamine drug, there are ways to breeze through the usual withdraw period.. a moderate to strong opioid can be prescribed for the next several week.. If you get sick or too sleepy, another medicine can be prescribed to counteract those side effects. The key is to start on medication before the legs start going nuts with rls.. You could switch to gabapentin plus pain medicine if necessary.. Just know that you do have some good options out there.
Hope coming off Paxil wasn't too hard? So did it also take 4 to 6 months to get relief from the worst of the rls symptoms. Hmmm, back and neck rls...what's up with that? What's your next plan of attack?
in reply to
It was difficult at times, yes. I did a bit of teetering from one drug to the next until I was off of it entirely. My back is feeling pretty restless these days. It's not a biggie deal. I am a little bit stressed so that aggravates everything. I am scheduled for talking to a professional about the stresses in my life.. maybe it will help with my physical symptoms.
in reply to
Yes maybe it is certainly worthy of a try.
This is new to me and quite fascinating. In a study out of Poland they found that rls was just as common among women taking HRT as not, BUT, the RLS was significantly worse among those on HRT. Then I saw on other RLS sites women complaining that their RLS became worse in the first week of starting HRT.
Now I will find out why...
That didn't take long. HRT reduces women's risk of cardiovascular events. One of the ways it does this is by reducing the body's iron supply. Bingo.
I guess if you're susceptible to RLS you can't take any drug or supplement that interferes with iron acquisition or that antagonizes dopamine such as melatonin.
My husband has RLS. About three times a year he kicks his legs in bed and tells me to chop them off. I go to the kitchen to get a big knife and by the time I get back he's fast asleep. As a child he said he would wrap rags around his legs to stop that strange antsy feeling. But it didn't happen that often and as he got older the above would happen.
My husband has primary RLS as far as I am concerned, as do I. My husband doesn't care much for eating and only does so out of peer pressure. He's130lbs with wet socks on. He has no diseases or conditions other than RLS. He shuns all medications whether it's antibiotics for an infection or aspirin for a fever. He does not drink or smoke or consume coffee or tea. He does not have a sweet tooth. He does eat bread sometimes. And his digestion is just fine. I basically hate him.
I wonder how many primary RLSErs would benefit from this approach. I posted an article on here about mice that were underfed had more and better dopamine receptors. That's what we need, all of us, more and better dopamine receptors. Primary RLS needs an environmental trigger. Clearly my husband never pulls that trigger.
What about the rest of you? What's your trigger? Can you live without it or find a replacement?
Cats2 in reply to
This really makes me think. My RLS was not as bad when I was thinner, but there were a lot of factors that may have been responsible for that - a switch to Mirapex, neurotraining, younger age. Sugar, chocolate, caffeine all seem to aggravate the condition for me. Alcohol is definitely out. I wonder if weight IS a factor. I'm giving up the three items above and I guess time will tell.
in reply to Cats2
Weight is not a factor, you can be Big, skinny and every size in between and still have RLS.
in reply to Cats2
No my daughter and mum are tiny size 8 uk and have RLS.when I was young I was tiny too and had RLS.Think maybe we are all generally thinner when young and tend to gain a little weight as we get older.As RLS is progressive it may seem legs are worse when we are heavier but this is due to progression of RLS not the increase in weight.If it was a factor I would join a slimming club tomorrow! X
in reply to Cats2
When you're susceptible to RLS it seems anything can make it worse. Don't listen to me or anyone else on here. If you think that under eating or avoiding certain foods might help give it a shot. Some people on here do not understand the difference between making RLS worse and causing it. 90 percent of the world can take antacids HRT statins Zoloft and never so much as have a twinge in their legs. One 5mg tablet of melatonin, just one and I'm up for the whole night. Most of America is overweight and sleep like babies. I am 5.9 and a size 8 but if I stuff myself one night then I'm up till 4 am with restless leg. The melatonin will give me restless body.
Another option might be to practice safe sun every day that you can and see if that helps.
And just the way the tiniest thing can set it off, the simplest treatment can bring immediate relief. So your under eating May work in a few days.
Are you still taking your vitamins?
in reply to Cats2
When you're susceptible to RLS it seems anything can make it worse. Don't listen to me or anyone else on here. If you think that under eating or avoiding certain foods might help give it a shot. Some people on here do not understand the difference between making RLS worse and causing it. 90 percent of the world can take antacids HRT statins Zoloft and never so much as have a twinge in their legs. One 5mg tablet of melatonin, just one and I'm up for the whole night. Most of America is overweight and sleep like babies. I am 5.9 and a size 8 but if I stuff myself one night then I'm up till 4 am with restless leg. The melatonin will give me restless body.
Another option might be to practice safe sun every day that you can and see if that helps.
And just the way the tiniest thing can set it off, the simplest treatment can bring immediate relief. So your under eating May work in a few days.
Are you still taking your vitamins?
Cats2 in reply to
I tried melatonin a couple of weeks ago and had a horrible night - then I read it was a trigger. Not sure how that works. I'm not familiar with safe sun - is that just staying out of it during the high hours of the day? I am still taking vitamins - a multi vitamin with iron and a magnesium supplement. Also a little tension tamer tea in the evening seems to help. I will know shortly if the magnesium supplement is being absorbed from some blood work I just had.
It's hard to know what the triggers are and I guess they can be different in different people. I'm one of the 0.1% that can't take Tamiflu because I get hopelessly depressed and cry for hours without knowing why. It's downright creepy.
in reply to Cats2
No it's very cool about the Tamiflu. And so easy to avoid. I will research that one of these days. Our modern society is so strange when it comes to depression and anxiety. They want to medicate it away immediately. Why not hold it for awhile? Get to know it. When it returns welcome it like an old friend. For all we know it might be an old friend - bearing lessons that we would never learn except in that state of mind.
Yes, I believe safe sun is either before or after that three hour window when it is strongest. And they say to expose 40% of your body for 10 to 20 minutes depending on the fairness of your skin. Here's the rub. I read that if you shower with soap after exposure to sun you will diminish the absorption of vitamin d. I have to re-research but as I recall the sun acts on the oil/cholesterol on and just below skin and converts it to vitamin d. Thus that sun exposed skin oil which contains vitamin d will be washed away before it gets absorbed by body over a period of two to three days. Incredible isn't it. Almost like photosynthesis. I'm not a fan of mega-dosing with vitamin d pills for the sake of getting our stores up and then considering our job done. There should be this wonderful slow infusion of vitamin d entering the bloodstream. Once it's stored the body tightly regulates it and who knows if it will be released when we need it at night.
The same is true for that iron you're taking. If you swallow it in the afternoon, and it gets stored, who knows if it will be available for your brain at night. If it's in your bloodstream your brain will be able to pick it up and use it to transport dopamine through-out your body and relax your legs. The iron you buy in the drug-store (called ferrous sulphate) is heavy. Iron is heavy, period. It will stay in your gut and never see your bloodstream unless you're 12 when your stomach acid can break down anything. So I use a form of iron that is already broken down, as much as it can be, and I take that, on an empty stomach, when I get RLS, at night ONLY. I have heard one too many people complain that the iron worked for a few weeks and then pooped out. But then I find out their doctor had them on high doses three times a day. There's a point of no return with iron. If your stores get too high then the body knows how to keep it from entering the bloodstream from the GI tract. I never want that happening because iron is the only thing that provides relief to me. So you really only want to take one chelated iron tablet at night. Most on here would disagree with me so you have to make up your own mind or consult with your doctor. Plus at night everyone's iron availability drops, maybe by as much as 50%. 90% of the world is not bothered by this drop, but clearly we are. There might be a very good reason for this drop. Maybe if we humans go into too deep of a sleep we risk being eaten by a saber toothed tiger. And maybe those of us with RLS are the centurions of old. Maybe we guarded the cave or the fire?
No supplements, like melatonin, until you run by this site. All supplements are guilty of aggravating RLS until we say otherwise. 
Cats2 in reply to
The statement about the cave or fire strikes a familiar cord. I was telling my son that maybe us RLSr's are just the far end of a spectrum of human evolution. Before making a trip to Iceland I was a little concerned about the fact that the sun would not be going down. How was someone with RLS going to handle that? I also read they have the highest rate of RLS of any population. I was actually perfectly in my element there - my legs were active at the night, but the sun didn't set and there were parties going on outside. I usually crashed for a just a bit in the afternoon and felt perfectly rested (interesting that my Mirapex would have worn off by then). On the other hand it played havoc with my husband's diurnal clock. Given that my ancestors were Nordic, maybe it was an adaptation that worked for them.... it just doesn't work in Maryland! I wonder if they have ever looked for a correlation between night vision ability and RLS. My night vision is unusually accurate. Sometimes I wonder if so many people are afflicted with this, is it really a disease as my nutty cold-turkey neuro called it?
in reply to Cats2
Iceland, wow, what a great vacation. Yes, if we with RLS, also have above average night vision, then that would speak to us being the guardians of the night, truly. In my 20s I applied to the FBI and they were astounded at my hearing. I can hear a pin drop before it hits the floor. I wear ear plugs every night because I can hear things like the ticking of my husband's watch. So I guess there has to be some guardians with exceptional night vision and some with exceptional hearing.
Well Cats, you just set by bedtime ahead by an hour. I now have to research what the heck is going on with Iceland and RLS. The land where the sun never sets.
Cats2 in reply to
I never thought about the hearing but my son that definitely has signs of RLS has incredible hearing as well. We nicknamed him dogboy because if my sewing machine was just plugged in (not even sewing) he could hear a very low hum at the other end of the house and up one floor. Maybe we've hit on something.
Iceland is an interesting place - if it wasn't for the Gulf Stream, life would be impossible there.
Last night was not a good night - trying to evaluate why. There are a few differences between it and the past three nights - late dinners, watching a movie before bed and surviving part of yesterday on a 1mg while waiting for my 2mg prescription (I'm thinking it's that one). Hope you got 8.
in reply to Cats2
Yep, rls is about twice as common in Iceland...of course among women, not really men. And IBS is twice that in Iceland as in US. And iron deficiency among women of childbearing years is about double other countries. What's up with down there?
in reply to Cats2
I have to start getting ready for bed now so I'm unplugging from the matrix for 8. My best guess at this point as to why Icelanders have higher incidences of certain diseases is excessive, unavoidable, in-breeding.
in reply to Cats2
icenews.is/2013/11/30/icela...
This too. Genetic predisposition and environmental trigger. Icelanders have sky high antidepressant usage (trigger). That's why they have such high rates of RLS and in-breeding (genetic component).
Cats2 in reply to
Hmm - I wonder if they ever considered that the same dopamine problem that causes RLS can contribute to depression.
Alot of people find certain food and drink can be a trigger for their RLS. If you husband only has RLS three times a year he is very lucky. I would say his is very mild and the fact his diet could be helping. BUT, for most of us, we have severe RLS, RLS that is unrelenting no matter what we eat or drink, or try to do to help us out. Thats why we have to take the meds. either that or end up suicidal.
I went on the anti- depressant Lustral (Sertraline) 100mg (2 a day) at the same time I started on HRT as I was very weepy, moody and just "down" all the time during the menopause. Five Years on, my doc suggested it was time I came off HRT so started to reduce the dosage and my RLS came with a vengence!!! It was awful, sos much so I want back onto the HRT. I'm continuing to reduce the Dosage of Lusteral and doing ok, but I'm convinced that reducing the HRT kicked off my RLS? My sleep pattern is non existent and I get a few hours here and there over the last 10-15 days... it after hearing all the horror stories that go with coming off HRT, I' m too scared to think about coming off now...
I have very active RLS, it was brought on when my left leg was degloved when I was hit by a bus in 2004. I have right-side brain damage also. I was placed on 0.25 mg Mirapex, Pramepexole, TID. that worked. RLS have turned into violent spasms of the leg, now of both legs, My dose has increased to 0.50 mg to 1 mg QID, then to Requip. None of them were really very effective. Cannabis is legal in Oregon now, some species work well on RLS. Google 'RLS and Cannabis' read on and on. My question now is how much will and effective species cost me? It used in Marijuana butter form and rubbed onto my quads and abductors. That did work for me. Remember to lick your fingers clean. Waste Not ....Check it out. I'd about given up hope until I buttered my leg. Requip paralyzed me, which is a pretty severe way to stop RLS. Why Mirapex stopped working for me I don't know
Not what you're looking for?
You may also like...
Mirapex
notice of side effects/ withdrawal. I have been in agony but thinking it was in my head.
how long...
Mirapex
I have been on mirapex for about 10 years. For the most part I have had good success once I got to...
Wanting to discontinue Mirapex
discontinue Mirapex after using for over 20 years for RLS. I have read so many adverse side effects...
Restless Leg Syndrome and Mirapex
Hello,
I have severe RLS. I have been taking Mirapex for about 3 years. It was a relief to find...
Mirapex and augmentation
Hi, fellow and sister RLS/WED sufferers! I'm an American Benedictine sister here on false pretenses...
Related Posts
Mirapex & urinary tract infections
augmentation with Mirapex (pramipexole)
Withdraw from MIRAPEX to Cannabis
Stopping mirapex 0.375er
Mirapex pramipexole withdrawal taperModeration team
KaarinaAdministrator
