Success with Mirapex?

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
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tomkay
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Success with Mirapex?

Post by tomkay »

Betty/WV wrote:Thats the key, finding a doctor that will work with you. Not an easy task.


You are so right and here in the UK even harder perhaps. I've just today been put on Pramipexole (Mirapex) but that's only because the locum doc had put me on Ropinirole (Requip), which didn't work. The doc asked if I was sure that it wasn't all because of an over-active mind and couldn't for the life of him understand why RLS was impacting on the rest of my life!!! He looked in a book and said 'You can try that one if you like'. Great skills, eh?

Any success stories with Mirapex?

Tom

P.S. Sugar ratchets up the RL with me. Seconds of respite after scratching, massaging, stretching rather than minutes. Well, it IS a poison after all.
Kicking my legs in bed like a beached and disorientated snorkeler.

ViewsAskew
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Post by ViewsAskew »

Tom - forgive me for moving this without a warning to you. Not everyone reads the "non-pharma" section if they use pharmaceuticals, so I wanted to make sure you received a good response.

If you don't mind, would you tell me a little more about the RLS and your experience with Requip?
Ann - Take what you need, leave the rest

Managing Your RLS

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tomkay
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Post by tomkay »

You're quite right, of course. Wrong location :)

So. I'm 31 and I've had RL since I was about 15. Not too bad until I was 24 when it picked up pace. I had one year with almost no RL when I was living in Japan. I think this was due to the hours I was keeping rather than the diet, as I was still consuming some Western delicacies (carbs, beer). I was working 1pm to 10pm and going to bed after 3am. It seemed to suit my body clock.

In the last three years the RL have been awful (it's all relative, I suppose). Bizarrely, the healthier I get the worse the RL get. Odd. I've been taking Syndol - an over the counter painkiller in the UK that contains Paracetamol, Codeine Phosphate, and Doxylamine Succinate. It's the Doxylamine Succinate that does the job. I tried pure Codeine tablets whilst living in Poland and I just got spaced out but with dancing legs.

This year I bit the bullet and went to the doctor. He put me on Requip. The side effects made me come off it. Within 10 days I was experiencing RL in the afternoon (previously rare for me), started buying stuff online and feeling very sick after taking the tablet.

I've just taken my first Mirapex tablet. I'll let you know how it goes over the coming days, if you like?

Fingers crossed!!

Oh, and I've got a couple of ideas but I'm not going to try them until I know whether the Mirapex works. No point confusing myself.

I've bought some ginger root tablets for circulation. I'll cut out carbs late on. I'm going to get up a whole lot earlier so I can try and reset my body clock. I've got some other ideas from here but I don't want too many things at one time to keep track of.

:)
Kicking my legs in bed like a beached and disorientated snorkeler.

SquirmingSusan
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Post by SquirmingSusan »

Tomkay, that's interesting that doxylamine would actually help your RLS. It's a sedating antihistamine that usually makes things worse. Could you just be sleeping through the RLS because of the sedation?

One thing about the meds like Mirapex - Take the absolute lowest dosage that works for you, and stay at that dosage as long as it does work. Often the doctors want to raise the dose quickly, whether you need the extra meds or not, and that leads to more side effects and more risk for augmentation.

Best wishes with it, and welcome to the forum.
Susan

ViewsAskew
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Post by ViewsAskew »

Tomkay, I keep forgetting to come back here. Now I'm too tired to make sense.

Please watch the side effects. It's possibly augmentation. Too tired to tell you my story - promise to come back.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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tomkay
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Post by tomkay »

SquirmingSusan wrote:that's interesting that doxylamine would actually help your RLS. It's a sedating antihistamine that usually makes things worse. Could you just be sleeping through the RLS because of the sedation?


I think you're right. I also think that the reason I do sleep through the RL when taking Doxylamine Succinate is because I'm also taking St John's Wort. I understand that St John's Wort can exaggerate the sedative effect. Certainly when I used to take Syndol as a pain killer before I was taking St John's I didn't have the epic drugged up feeling the next day!

Thanks for the advice about Miropex. After one night of taking it I have decided to bin it even though I didn't have RL. Here's why...

- Since taking it I have had an excruciating headache from temple to temple. I've never experienced a headache like it, in fact. I can't shift it.

- I woke up three times in the night absolutely wide awake and couldn't settle back down to sleep.

- I was sleep walking around the room, doing stuff (nothing too odd!). I came back to bed and started conversations with my wife but she said they were confusing and that I appeared confused.

- I had an incredibly dry mouth.

- I felt sick.

- I felt a kind of fluttering to the left of my heart - could have been muscular.

It just seems like a horrific drug all in all. I'm going to put some other ideas into action, I think.

Fingers crossed....again ;)
Kicking my legs in bed like a beached and disorientated snorkeler.

Neco
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Post by Neco »

Interesting notes about your medication experiences..

Codeine is pretty weak as far as painkillers go, and I never attained more than roughly 90% relief when taking all the way up to the max daily dose.

You'd probably have better luck with a stronger opiate, like Hydrocodone, or even Tramadol.

Dextromethorphan and Doxylamine have pretty much become part of my unofficial regime, along with my Methadone. DXM in particular is known to potentiate opiates and it really leveled out my relief durations as well. Although sometimes the Doxylamine will put me to sleep.

sandrala
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Mirapex

Post by sandrala »

Hi. I'm not sure of the etiquette here. I haven't been here for a while and am not sure if I can just jump in, but I'm desperate for an answer to my dilemna. I've been taking Mirapex for about five years. It worked great; didn't augment. Now it's absolutely putting me to sleep during the day. Rather, I find myself waking up rather than going to sleep! Tried Requip; didn't work. Is there something I can take which will keep me awake while I take Mirapex (I start with a half of a 1.5mg. and often need another two halves) - or any other suggestions at all? This is seriously impacting my job and driving. I do not want to resort to serious opiates which sound to me as scary as RLS.
What are you grateful for?

Neco
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Post by Neco »

Hi,

There are medications out there that some people here have taken to help them stay awake, but I don't know the specifics.. I'm sure they will comment on them if they see this.

However this is a very serious issue and you need to contact your doctor immediately and let them know what is going on. They are probably in a better position to recommend something than we are also..

As far as opiates goes, I wouldn't worry too much about them if you eventually have to decide on taking them. They are safe for the most part and if you're worried about addiction, it probably isn't likely as long as you don't have an addictive personality or anything (and if you did I imagine the Mirapex would have caused its own problem by now with gambling, money, sex, or other things like that).

The best thing to do is to educate yourself about any potential medicines you may take in the future, so that you know yourself what the facts about them are. As widespread as addiction problems may appear to be, the fact is it effects a relatively small portion of the general population.. But we live in a sensasionalist culture, so I can understand why people are skeptical about painkillers and worried about becoming a pill-head, etc. I guess it doesn't help that we have celebrities in the news every other week dying from substance abuse though..

sandrala
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Post by sandrala »

Thanks for replying to my request. Can you tell me what opiates do in regard to RLS? Are they for pain? I've never regarded RLS as a pain condition. Do you take them in conjunction with something else or by themselves. It's true: I haven't found myself obsessively gambling or partaking in any other worrisome vices. I always feel the need to understand my options before I visit the doctor because although they are much better informed than they used to be, it's still pretty thinly understood.

Is there anyone out there for whom Mirapex has been effective who changed to another medication which worked for them? I'd appreciate hearing from you. Thank you so much.
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Neco
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Post by Neco »

Well, obviously I can't tell you exactly -what- opiates do in regards to RLS, as I am neither a doctor, nor do the people who are doctors actually know much about what causes RLS and why some medications work and others don't..


But opiates in general, work in the body to alter the perception of pain. They bind to our opiod receptors and can block painful feelings. As it relates to the nervous system (how we experience pain and other physical sensations such as RLS) they just work on relieving symptoms.

Some people have reportedly not been helped by Opiates, or the relief was not significant enough to call them effective, but I don't know if a real study of RLS patients on opiates has ever been done. Different people respond differently to painkillers, as well as different types of painkillers (there are a LOT out there).

Basically for most of us, we take our meds and after 15m to an hour, the RLS sensations will have faded significantly, or be gone for the duration of the medication.

It doesn't matter whether you have painful RLS, or just weird creepy crawlies, or other hard to describe symptoms. For some reason they just work. Probably because whatever we are interpretting as the problem is sending its signal through the nervous system areas that opiates have an effect on.

ViewsAskew
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Post by ViewsAskew »

tomkay, my first night with Mirapex was about as you described. It did get better, MUCH better. It took about two weeks. I had a constant tremor in my hands, I was lucid dreaming ALL night long and didn't really sleep, etc.

May I ask how much the doctor prescribed? I found out later that I could have taken much less that the doctor prescribed. My guess is he/she told you to take .25 mg. You can take a 1/4 of that to start if you want. We're all different, but for some of us, we only need a tiny bit of Mirapex to make a difference.

You might want to consider cutting it in half at the least and trying again. It might not resolve all the RLS - or it might. Either way, it will allow you to get used to it and not have those symptoms.

The headache is a bit concerning, I imagine. I wonder if it's a blood pressure thing. Mirapex can lower BP quite a bit.

Whatever you do, welcome to the game of "find the drug or combo of drugs that works for me." Many of us have played it and it's not particularly fun. Thankfully most of us do eventually win.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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tomkay
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Post by tomkay »

hey ann

the pack's upstairs. i'll have a look at the dose a bit later, though.

my doctor was useless. he got a phone call and said 'i have to take this. just double the dose after a week if it doesn't work'. that was the extent of my consultation. i won't be going back to him. the locum i saw before him was excellent. like being on a first date. interested, clearly listening etc. super!

i'm going to try my hardest to find a non-drug route. the side effects are just too too scary. i've just got rid of my headache after 24 hours. i've been in bed all day and have taken migraine drugs for it. i had light sensitivity too. feeling much more like my old self now. the inside of my body and mind feels odd, dirty, like something is wrong. it's like having a massive hangover.

so. what next? well, no more st john's wort, no more syndol, i'm buying a light box to try and reset my circadian rhythm and am looking at ways to improve circulation (ginger, different mattress).

here's hoping :)
Kicking my legs in bed like a beached and disorientated snorkeler.

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Post by Polar Bear »

Hi Tomkay
On the subject of matresses, I can recommend memory foam.
Very comfy, unless rls is present and then its walkie time regardless of the comfort. However I feel the memory foam makes my movements less disruptive to my husband's sleep and also I can get in and out of bed more discreetly and with less disturbance. Even a 3" topper which I have put onto the bed in the guest room is excellent.
Betty
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ViewsAskew
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Post by ViewsAskew »

I also love the memory foam. It allows my bed partner and I to stay in the same bed, even if I'm up and down a lot or moving/kicking. The movements are quite isolated so I do not bother him.

The non-drug route works for many. It depends on your level of RLS and how easy/hard you find it to deal with. I did it for 30 years without drugs. I'm at a time now, however, that I couldn't have any quality of life without drugs. It's all about what works for you in your life.

The most important things to do, to me, are:

1. Get your ferritin checked. That should have been done at the first meeting, but many docs do not do it. If it is below 50 (some docs say 100), then you start taking oral iron. The rec is 3 tabs a day of 325 ferrous sulfate (which is 65 g elemental, I think, but I could be remembering wrong).

2. Find out if you have anything else contributing to RLS. Diabetes, neuropathy, celiac disease, etc. Read the Sticky posts in the New to RLS section and the Pharma section for more info.

3. If you have a flexible schedule, consider just going with the RLS, not fighting it. Stay up to 3 Am before you go to sleep and then you might not need to do anything about it.

4. Try the vitamins and supplements that work for some: magnesium, vitamin E, vitamin B (complex), calcium. Not sure if anything else is in there...

5. Read through the whole non-pharma sticky. There are many things people have tried from hot baths to acupuncture. None of these work for everyone and many times they are palliative and the results go away as soon as you stop doing them. But, some people find that they can make it manageable. It's just finding the set that work for you.

Related to this is to buy Jill Gunzel's book, The RLS Rebel. Visit her website, rlsrebel.com for some tips you can use before you get the book.

6. Don't fight it when you get it. Get up and get to work keeping your brain busy. Puzzles, thinking deeply, working out something...these things all can stop RLS in its tracks. It may not come back once you stop it and you can get back to sleep.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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