Want to know about MIRAPEX

Discussion in 'Fibromyalgia Main Forum' started by charlie21, Nov 12, 2006.

  1. charlie21

    charlie21 New Member

    Many people have been in touch with me asking about Mirapex. The easiest way is to look at my posts on charlie21, as there is so many. This is based on my own experience, and hayleycoles. We have had first hand experience of this drug with some good results. Please be aware it is not a complete cure for FM, but I do believe it will help mobility, it reduces muscle spasms and pain, and it great if you suffer from restless legs. I have found better results from starting very low, and every two weeks to increase it. Also find it is better to have it one to three times a day, and not just one at bedtime I still can take my other medication also. I am not promoting this drug, merely sharing my experiences with you. The drug is called Mirapex in the U.S.A., and Mirapexin in the U.K. Happy reading Charlie
  2. forfink

    forfink New Member

  3. shar6710

    shar6710 New Member

    This post caught my eye because my Dr just prescribed Mirepex for me. I have CFS but he's giving it to me for RLS and probably because of this "movement disorder" I seem to have developed; unsteady gait, generalized tremors, etc.

    Haleycole glad you're back.

    I'd type more but I have to go back to bed-feel horrible.

  4. charlie21

    charlie21 New Member

    It is so nice to have you back again, I for one am delighted. I started my first big flare yesterday,after three weeks which is good for me, but something exciting at work happened yesterday. They have taken on a new psychologist, and we were chatting in our lunch break, and she said she used to study this board for her research on fm. She said fm is not a head thing, which bothered me a bit, but knew everything about it. It was so nice to talk to someone face to face about it, and said do you have this and do you have that and she was so accurate. She is bringing in her research papers, and and some books which may be heavy reading, I was really excited about it. She said she has been observing how hard I work, and that I should be pacing myself more. She said there is nobody looking over my shoulder with a whip and saying move faster, and that is so true. My restless legs on Mirapex have been wonderful. The flare i think was caused by doing gardening on a rather cold day, i was planting bulbs.

    My doctor isn't about for a week as on his hols, and I am looking for a bigger increase during the day of Mirapex if possible. Couldn't seem to get the muscles between my shoulder blades to relax yesterday, even with my tramacet. Woke up this morning with ribs and back hurting more than anything else, but better than yesterday. I will be seeing this psychologist again today, as she is part of our team. Hayley I am not being councelled by her, don't feel the need for that kind of thing, I am really just excited that she knows so much about it.

    Hope you are okay. Was going to email last night, but couldn't keep up with them. You are one popular lady. I think we should still continue on the mirapex, or what ever else research you find, because if you make a difference to one person, that is one person who could possibly make other choices. Speak with you soon. Charley
  5. charlie21

    charlie21 New Member

    Hayley I have a barometer, that has been on my wall for about 15 years, and I have never taken any notice of it. Tell me a bit about the readings, and when they seem to make your legs play up. I though the mirapex would have been good for the restless legs. I am taking 0.18 mgs at bedtime, and it is working wonders. Charlie
  6. charlie21

    charlie21 New Member

    If you are having balance problems with the mirapex, hang on in there, it does do that for a few day, and will go away, it will also do it again I noticed if you have another increase. It will sometimes make you feel a bit sleepy, but again about hour after taking it it passes off a bit, but you can function. It is mostly the early days that people give up. I have been on it I think I am losing count now about two months. It isn't a complete cure, but it has reduced the amount of times I have flared, and the duration. I just need to increase mine a bit to cover the muscle spasms a bit more during the day. Do it small doses and slowly get much better results. Charlie
  7. shar6710

    shar6710 New Member

    You mean my balance might get worse?

    I haven't actually started the mirapex. It was just prescribed yesterday, I have to wait for my husband to pick it up for me.

    I hope it helps my sleep because this sleep specialist wants to get me off all sedating drugs thinking that it might give me more energy during the day.

    He was a little odd. He called CFS just a label (I started to get my hackles up but listened to his explanation). If he accepted that label that someone gave me then it was doing me a disservice because he would dismiss my symptoms as related to the CFS and not try to find other underlying conditions that might be treatable.

    He was very thorough and thinks I probably need a tilt table test and another referral to a neurologist that specializes in movement disorders.

    I'll let you all know how I do once on the mirapex.

  8. charlie21

    charlie21 New Member

    Sorry what I meant is you may feel dizzy when you first go on them, and it starts to subside after a few days. If you have an increase, it doesn't make you even more dizzy, merely the same type of dizziness you had on your first dose as in when you first went on it. Either way the dizzyness does go. Charlie
  9. --Scared?--simply due to the 'strange obssessive behaviours" a rare few can develop--I am ALWAYS the 'rare but possible' side effects...and with my fathers side of the family (he, his 3 brothers, his sister, my sister, my grandfather(god only knows WHAT all my grandfather had-just plain old nastiness would be more like it)--anyways, with their history, they are *all* compulsive shoppers, my dad has been a gambling addict all his adult life & his brother (who was a card dealer for Caesar's Palace 23yrs, and then Binion's Horseshoe a cpl yrs) now does not work, and is a "professional online poker player". My grandfather was a gambler too.....he'd drag out to the Elks, Eagles, etc clubs with cancer, dragging his portable oxygen in to play cards, in *smoke filled rooms* all night. Come home, barely breathing.

    Little more detail than necessary--sorry, haven't slept in over 24+ hrs, not one wink, and spent 4 hrs in the ER, with IV's. (YAY!)

    Anyways---1.) I feel ok, because....I don't even know HOW to gamble, except for an ocasional (once every 1-2 yrs) trip to a riverboat, hubby & I take a specific amount of money, when it's gone, it's gone, if we win, we quit...

    As of a cpl months ago, I became bedridden again, so, doubt I could even online gamble(and wouldn't dare!) Can't shop-and don't even enjoy it, just NO energy. To feed myself, is a CHORE I put OFF! (Gawd..pathetic. :-( But--the FOOD addiction--yeah! I could go for that one before I knew what HIT me (or my waist..) and I don't need that--at ALL!!!!!

    I'm having major issues with the -over-20-lbs-I gained when I quit topamax, then went right on 30 days of high dose (worthless, & very harmful this go around) steroids....

    Docs panic run tests, tell me I'm too skinny, blah blah blah, 113-121lbs.....go up to 147 (now 142? I don't know, can't even make myself get on the scale) and pain clinic doc says "I can tell you're on steroids! You needed to gain weight, but NOT LIKE THAT!" (*sniffle* ouch.)

    I worry about other sides, too...
    but, thus far, NO doctor has addressed my doggone spasms/spasticity in my legs. ( have spasms all over, back, neck, legs, etc but my legs are hard as concrete 24/7 neuro ignores, pain doc ignores, pcp ignores "take calcium" (I cannot* tolerate 1600mgs calcium! ANY calcium tears my guts to pieces!)

    And, truly, my flares, are the worst, besides my facial neuralgia (trigeminal neuralgia) & bulging discs in C-spine,

    The worst, is from my lower back (herniated disc L5-S1 & terrible SI joints that stay flared up ALL winter long!) which send nerve pain down both legs... that's my worst, & most constant pain symptoms...

    And, I'm running out of patience, & options re: pain meds....not to mention, the pain clinic is REALLY slacking when it comes to refills! (The ER trip--they told me was withdrawl, because...a NURSE couldn't add up 30 days correctly!) I hadn't had a fentanyl patch on for 3 days, -nausea, vomiting, dry heaves, diarrhea, freezing to death, so...I had to have IV fluids, tons of blood tests, cultures, & urine test....all were fine....

    Mostly due to the severity of my inability to get warm/stay warm, they were pretty sure it was withdrawl. My sister went up to pain clinic & picked up the script...which they'd denied her friday, saying it was too early (they ran out SUNDAY).

    The ER was actually wonderful to me (first time ever! YAY!) and visibly not happy with me suffering because of some moron/cruel-=whatever nurse. It's the third time. First time seeking help with ER. The other 2 times were clonazepam refills.

    I'm really wanting to get off as many meds as possible, and if Mirapex could get my pain down *SOME*, help energy, & sleep *SOME*, and spasms!!! Maybe I wouldn't have to rely on unreliable ppl for clonazepam refills, every 30 days, (for twitching, jerking, etc..it does not help spasms, at all) and I've already quit Lunesta & Provigil, which the pain dr will not like, but...SHE wasn't having the side effects- nor was she paying for all these.

    I also quit Norco----after they FAILED to call it in-oh...2-3 months ago?? Didn't even bother calling back. Don't need it, don't want it. Quit aciphex too.

    My pancreas & liver enzymes were back to normal too, in the ER-----Hmmm.

    Anyways, I'd like to MAYBE run this by my PCP Wednesday, but, how much is Mirapex roughly?(USD) (my insurance will cover 50% name brands & 80% on generics)

    And, please, with my terrible tummy--how bad are the stomach sides, and *what* are they, when you start...and

    what was that starting dose again? (U.S.)

    I apologize again for rambling, I haven't eaten in 3 days, or slept much in as many, either, and slept NONE in past 26 (UGH!) hours..

    But, I appreciate any and all (good, bad, ugly, awesome) brief summaries? about the med, regarding cost, starting dose, side effects-& severity...oh and every* symptom you've noticed help in...I need to decide if this can be worth it for me.. (I'm going to try a TENS unit too) SICK of MEDS making me SICK) (and suffering terribly due to ignorance & neglect when they're not called in properly)

    Thanks so much

    A very lethargic, but.....zoned Laura
  10. charlie21

    charlie21 New Member

    I don't even know where to begin, you have so many issues. I can only tell you that mirapex is not a complete cure for fm, want to be honest with you, and have only based it on my own personal experiences. I have been on Mirapex for about 8 weeks now, and I am having my dosage increased slowly. With each increase, I have noticed a difference in the amount of flares, and the duration, but I will have flares from time to time. The muscle spasms I think can be worse than the pain. I suffer from restless legs, which was one of the reasons I went onto mirapex, but I also heard it can help some fm sufferers. I am still on a very low dose at the moment, and it has not been perfected. Each time it is increased, I can feel a lot of difference, then I feel I am ready for an increase, because it wasn't quite as effective as it first was. I felt the results within a couple of days, but still feel I need to increase it, to get even better control of my muscles spasms, even though they have improved. Like I say I have a long way to go before it is perfected. I have been having an increase every few weeks. I found it was better to be on them three times daily as opposed to two times, so I am going to ask it to be increased again. My doctor is away for a week, so have to wait until he comes back. I have not put on any weight with this drug. The side effects have been minimal, and I know that people say it improves sleep. I am not sure how much difference it has made to my sleep, because I take zopiclone 7.5 mgs close to when I take my mirapex, because I was only getting one to three hours sleep a night, and I now get 8. I still feel tired during the day sometimes, but I have been able to reduce my painkillers since being on mirapex. Used to take them every four hours, and I am now down to about three a day, more than halved. I am not allowed to have steroids, because I am going to eventually be a kidney donor to my hubby. Try to avoid things like caffeine which is bad for fm people, as well as keeping you up in the night, and apparently sugar isn't good for you either. Your post was quite long, and couldn't take it all in, but if you need any more answers if I can help you, I am here. Charlie
  11. charlie21

    charlie21 New Member

    How are you getting on with the mirapex for the restless legs, and what dosage and how often. I am delighted with the results, in fact that has been one of the most prominent things I have noticed. Charlie
  12. I'm looking for all sorts of ideas & alternatives, MOST of the time, my primary doctor will do whatever just to get rid of me, because my illness has been so hard, and on-going....she's a real quitter. I nicknamed her the 'referral-queen' (my mom--bad as this sounds..swears my primary is on cocaine, or something of the like...she is very....flighty...jumpy, etc and scatterbrained..) We watched her lose 3 or 4 prescription pads in her lab jacket one day, and go after another. Amazing.

    Anyways, yes charlie, I'm definitely not one looking for any type of miracle cure, I'd never be so foolish, in fact, I'm rather jaded..

    I'm just looking to decrease my meds, or get OFF the patches, and maybe just get back to Lortab 10's, even though harder on the liver...NEVER the headache to refill!

    And Mirapex seems like it could help *several* symptoms, mildly....then I wouldn't have a prescription for this, prescription for that, etc if it worked...if it didn't..nothing lost..

    I'm not *too* worried about that rare side effect of compulsive behaviours, it seems my poor sister inherited our dad's side of the families genes (bi-polar, etc) and I got my mothers side (physical illness) it would just be my luck to get compulsive eating...since steroids have turned me into a freakish cookie monster. EEK. Also I had stopped eating almost altogether (sometimes a few crackers, and then a rice cake--for the entire WEEK) while on Topamax, which was why I quit it, along with hair loss, and my appetite seems much larger than it ever was..but, I'm controlling it, not gaining, just really not losing much.

    The only other question I have, and...Hayley I think cld answer, maybe? (you're in the US?) was the cost....OH and that dose you started on....I guarantee you my Primary will never have heard of anything I mention.

    Thanks so much, I have until Wednesday, and am going to take a list of suggestions to try, to get me off some of the more harsh meds, and also so she* can prescribe, (she will give plenty of refills, so I'd never be stuck on a weekend with NO meds!--unlike the pain clinic that doesn't even give refills on clonazepam..the pain meds, I understand, that's how our pain clinics have to work here, but, clonazepam....geeze. At first, I had to call for my acid reflux med every month, then they started giving me my script, with 2 refills..

    I'm just trying to simplify my med intake, reduce my pain the gentlest but most effective way, the spasms, sleep, etc problems, and also make it easier on my loved ones, who pay for, and pick up these meds often.

    Thanks again, Laura.
  13. Yeah, I think it's worth a try maybe. Cost should be fine, (who can measure the cost of even a *chance* at cutting down other meds--then it would/could even it out, or even save...) I'm always "cautiously optimistic" more cautious, than optimistic..not much at ALL in the past 6 yrs has helped me. High dose anti-convulsants for my facial nerve pain (and yet I'll still have horrible pain in my legs, stemming from lower back/S.I. joint inflammation) but, I'll take what I can get..

    My legs constantly* feel (the upper) like rubber bands, that have been absolutely stretched as far as they can possibly GO, and that someone is *still* pulling at both ends...very painful, and something just like ? crossing my legs, can *pull* the muscle, causing pain & burning..

    Anyways, thanks for all the info from you & charlie, will run it by my primary doc,

    and I do agree--some docs DO want to help us, and I do know that some of mine, for a fact--gave up on me, because I was sort of this huge red flag in their face that said "you're a huge failure!" they truly cared, and felt helpless like I did, and clueless...only *I* can't bail out on myself/my body--but they can..rather deal with their conscience (??sp??) than face their "failure" over & over....that IS the way my GP is in a way...because she was sympathetic at one time...her own sister in law is fairly disabled with MS..

    I agree with what you said quite a bit. And then of course, there will always be the just flat out don't care, thought they'd be doctors for the money only, treat people like crap, a$$h_les...and the burn-outs, that don't retire when they KNOW they should've years ago..

    Thanks again, Laura M. (also going to bring up requip, tens unit, other alternatives, to what I'm on now, and what might possibly replace these totally worthless, hardly stick to me, break me out in rashes fentanyl patches.)
  14. LFun

    LFun New Member

    Hello all, I just came from a dr. appt. and she prescribed a new drug for me. I was looking for info on it and lo and behold, I run across this site! I am excited to have others to share ideas with. I am unfamiliar with Mirapex and was looking for any positive and negative feedback from people that have taken it awhile. Please share with me your experiences before I fill my prescription.
    Thanks to you all. Lisa
  15. charlie21

    charlie21 New Member

    I am looking to my third increase in mirapex, and believe this is the way you should do it. I started off on 0.125 mg, then two weeks later 0.18 mgs, and still need it to be increased, to have better control of the muscle spasms during the day. I am on a very small dose still at the moment. Have to wait until my doctor comes back from his hols. I believe this is the proper way to get meds right, that way you do not take more than you need. Since being on mirapex I have reduced my pain meds by over 50%.. Great for restless legs if you suffer from it. Those who are worried about gambling problems, I think it is rare, and you probably wouldn't be given enough initially to get you to that stage anyway. Hope it works Charlie
  16. charlie21

    charlie21 New Member

    You will find lots of info on Mirapex. I have been doing posts on this for some time now, so if you just go into charlie21 on the search, you will see lots of information. Please give us some feedback as to how you get on with it. My intial side effects was slightly sleepy and dizzy, bear with it, it will pass. I just didn't want it to frighten you off before you have given it a chance. Start low and have it gradually increased. Great for restless legs. I am still fairly new, been two months on it, got the evenings sorted out, need to tweek the daytime dose. Good luck charlie
  17. shar6710

    shar6710 New Member

    I hope to take the first dose tonight, my husband is picking it up now.

    I'm a little worried because I'm taking it with trazodone at first and then weaning off the traz. I sure hope the mirapex helps me sleep because normally without it(traz)I don't sleep at all.

    The doctor told me the dosage and I think it is .125mg just at night but I can't remember for sure.

    I'll be sure to let you know how it works for me. I hope I feel well enough to go to friends for T-day. In fact I'm limiting my time on here to rest up, especially since I feel horrible these days.

  18. shar6710

    shar6710 New Member

    Well I took my first dose last night and although I did wake up a lot, I feel that when I did sleep it was a better quality. I still took a whole Trazodone-too chicken to start weaning off. Maybe after Thanksgiving.

    Still think I need to up the pressure on my CPAP but I guess I'll just have to wait and see on that.

    Anyway I do feel a little better today but I still am going to have to take my post-breakfast nap.


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