Guest guest Posted February 13, 1999 Report Share Posted February 13, 1999 Hello Muriel, I take Sinimet and Mirapex together. I don't think that Mirapex does much for me. I tried to switch from Sinimet to Mirapex (upon my neuologist's recommendation) but I found that Mirapex alone, even at high dosages, just did not help very much at all. I understand that it does for others. I do not know anything about Permax, but your doctor can find out about Permax+Mirapex if he/she wants to. Just because a doctor doesn't have familiarity with a disorder doesn't mean that he/she cannot gain familiarity with it by communicating with people who are experienced in treating the condition. If your doctor is not willing to make this effort in order to properly advise you and answer questions, I personally would look for another doctor. I don't know where you live and I realize in small towns, etc. there may not be a medical professional experienced in treating RLS but I would hope there are doctors who will go " the extra mile " and learn about it. Jane janegf@...> ---Muriel wrote: > > > > Just found a doctor who actually has heard of rls. I am just trying > Mirapex, but now I am wondering, should > I just stop the Permax completely or taper off while I am adjusting to the > Mirapex. Has anyone been on > both? I know I could ask the doctors but they don't have the experiences we > do. So does any one have > suggestions. > > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 1999 Report Share Posted February 17, 1999 I've been taking Mirapex since June 1998. Replaced Permax. Increased in 0.125 mg increments to 0.5 mg/day taken in divided doses during the evening. RLS symptoms ended completely. Decreased to a total of 0.375 mg/day. I try to take 0.125 between 7:30-8:30; the second 9:30 to 10:30 and the third around midnight or when I go to bed (12:30 to 1:00). I was nearly completely free of RLS until recently, but I often have trouble sleeping. I take Vicodin or Xanax at bedtime to help, but I still don't sleep well. BUT-- at least I can rest with the legs at peace. However, I have been having some mild daytime and occasional evening RLS over the last month or so. It seems to be getting worse. So I do seem to be developing a tolerance to the Mirapex. I have resisted the temptation to increase the dosage, as I fear that will only lead to increased tolerance. But so far, I haven't experienced augmentation like I did with Sinemet. I also became tolerant to Permax, but it never worked as well as Mirapex and it made me sick. So far, I am still feeling the best I have in many years thanks to the Mirapex. But I doubt that it will will last forever. --, 52, western NY ---Serdikof@... wrote: > > From: Serdikof@... > > Hi group, > Could anyone who is taking mirapex send me information about dosage and > the effects of long term use (tolerance, augmentation, etc.) Until we have > more clinical studies, I think that we are our own best resources for > information. I would appreciate any help you can offer. Thanks, and sleep > well? Kathy, 56, PA > > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 1999 Report Share Posted February 17, 1999 I've been taking Mirapex since June 1998. Replaced Permax. Increased in 0.125 mg increments to 0.5 mg/day taken in divided doses during the evening. RLS symptoms ended completely. Decreased to a total of 0.375 mg/day. I try to take 0.125 between 7:30-8:30; the second 9:30 to 10:30 and the third around midnight or when I go to bed (12:30 to 1:00). I was nearly completely free of RLS until recently, but I often have trouble sleeping. I take Vicodin or Xanax at bedtime to help, but I still don't sleep well. BUT-- at least I can rest with the legs at peace. However, I have been having some mild daytime and occasional evening RLS over the last month or so. It seems to be getting worse. So I do seem to be developing a tolerance to the Mirapex. I have resisted the temptation to increase the dosage, as I fear that will only lead to increased tolerance. But so far, I haven't experienced augmentation like I did with Sinemet. I also became tolerant to Permax, but it never worked as well as Mirapex and it made me sick. So far, I am still feeling the best I have in many years thanks to the Mirapex. But I doubt that it will will last forever. --, 52, western NY ---Serdikof@... wrote: > > From: Serdikof@... > > Hi group, > Could anyone who is taking mirapex send me information about dosage and > the effects of long term use (tolerance, augmentation, etc.) Until we have > more clinical studies, I think that we are our own best resources for > information. I would appreciate any help you can offer. Thanks, and sleep > well? Kathy, 56, PA > > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 1999 Report Share Posted February 28, 1999 Just a reminder to those who find Mirapex tapering off in effectiveness. Dr. Levin had this experience several times and says this is quite common. If it stops working for you, it seems to be worth using something else for a week or two and then giving it another try.....since it seems to be so good when it is working. Just a thought..... Connie, almost 62, MD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 1999 Report Share Posted February 28, 1999 > > >Hi all >For all those who are taking mirapex. I am taking .375 mg at night >before bed (I have PLMD) and it worked great in the beginning and it >seemed to go away some what as time went by so I talked to my doctor and >he raised it to .5 mg I will try it tonight. I would like to know what >other people think of Mirapex, what is your dose? > >Hi Rodney, I also had a horrible reaction to Sinemet. Rebound and augmentation were terrible. I am now taking mirapex (.25mg) and it is had been very effective. I have had increased rls during the day, but I can live with that. I hope that this is a long term solution. Don't we all. Good luck, Kathy, 56 PA > >------------------------------------------------------------------------ >We have a new web site! >http://www.onelist.com >Onelist: The leading provider of free email community services >------------------------------------------------------------------------ >This forum is for support only. The information posted to this List is for support purposes >and is not intended to replace the examination, diagnosis and treatment of a licensed >physician and no such claims are inferred. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 1999 Report Share Posted March 9, 1999 In a message dated 3/10/99 1:09:21 AM !!!First Boot!!!, jrobbins@... writes: << Hal White seems to be having a tough time with Mirapex and just when I was going to list it as my next try after the Permax wears off. >> When Mirapex first became the " newest " treatment for RLS, I wanted it too! I went to my sleep doc " demanding " Mirapex. Fortunately, he stalled and hee&hawed about it. I am now glad that I am still taking Permax and I did not make the switch. But then again, the Permax is working nicely for me (for now). So, I guess I won't fix something that ain't broke, if you know what I mean. RAINBOWPED@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 1999 Report Share Posted March 9, 1999 In a message dated 3/10/99 1:09:21 AM !!!First Boot!!!, jrobbins@... writes: << Hal White seems to be having a tough time with Mirapex and just when I was going to list it as my next try after the Permax wears off. >> When Mirapex first became the " newest " treatment for RLS, I wanted it too! I went to my sleep doc " demanding " Mirapex. Fortunately, he stalled and hee&hawed about it. I am now glad that I am still taking Permax and I did not make the switch. But then again, the Permax is working nicely for me (for now). So, I guess I won't fix something that ain't broke, if you know what I mean. RAINBOWPED@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 1999 Report Share Posted March 9, 1999 In a message dated 3/10/99 1:09:21 AM !!!First Boot!!!, jrobbins@... writes: << Hal White seems to be having a tough time with Mirapex and just when I was going to list it as my next try after the Permax wears off. >> When Mirapex first became the " newest " treatment for RLS, I wanted it too! I went to my sleep doc " demanding " Mirapex. Fortunately, he stalled and hee&hawed about it. I am now glad that I am still taking Permax and I did not make the switch. But then again, the Permax is working nicely for me (for now). So, I guess I won't fix something that ain't broke, if you know what I mean. RAINBOWPED@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 1999 Report Share Posted April 6, 1999 Hi Kathy, I've been taking Mirapex for a year now, and these are the side effects that I have experienced, but they are intermittent. Sleep disruption Headache Post nasal drip Frequent urination Loss of libido Increased appetite Stiff neck muscles Otherwise, the Mirapex has been about 80% effective for my RLS. I notice that if I take my Mirapex at 6:00 PM, or thereabout, I sleep better. Hope all is well with everyone. Sweet dreams to all, Elaine, Malibu, Pouring rain and 54 degrees. BURRRR! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 1999 Report Share Posted April 6, 1999 Hi, It is the pack rat again; below is my file on Mirapex and Requip. One of the wonderful things about the RLS Cyberspace Support Group is you can instantly reach several hundred RLS sufferers for their experience on medications, side effects, their opinion, etc. Several months ago, my mother was trying to decide on whether to try Mirapex or Requip. She has Parkinson's Disease + RLS and had been put on Tasmar by her neurologist. She woke up one morning to read in the newspaper many taking it were having liver failure. A call to him, he said stop taking it which necessitated another dopamine agonist. So many responded quickly to my plea for help and information. We are both so grateful to each and everyone you to this day for being here! Insomnia is a common side effect with Mirapex. However, many have solved this, including my Mother, by taking it earlier in the evening. In her case, she takes 3 of the 1 mg a day (remember, she also has Parkinsons and RLS -- I think the two are unrelated), and takes the last one at 6:00 PM and generally goes to bed around midnight. Recently, Mom stopped taking the Mirapex for a short time when she had the CRUD, the more virulent form of the cold going around, as it makes her head a little bit stuffy. She thought until she would do this just until she got rid of the cold. Her RLS symptoms came back with a vengeance. Mirapex is helping both her Parkinson and RLS symptoms all in one. Mother's ferritin level had also been low previously and she admitted she had let up on eating iron rich foods and went back to better habits on this also. Below is my file and all the wonderful responses trying to help my mother at the time she was about to go ask for a prescription for either Requip or Mirapex. Barbara P. S. Save this for the next time you get impatient with our support group! Date: 12/30/98 5:55:47 PM Eastern Standard Time Tried Requip for only one week. Made my RLS very bad. I also have PLMD. My entire body including my head started twitching uncontrollably on 1 Requip pill. Had to quit. Now I take Sinemet for the PLMD and 1mg Klonopin for the RLS. Pam HI BARABARA: I HAVE BEEN TAKING MIRAPEX WITH GREAT SUCCESS FOR 6 MONTHS OF NUMEROUS OTHER MEDS I TAKE IT WITH KLONOPIN THE REQUIP WAS A DISASTER AND SENT MY LEGS IN TO A FRENZY. HOPE THIS SMALL INFO HELPS YOUR MOM. Barbara, I hope I got your name right. I have been taking Requip since probably last spring. I have had wonderful results with it. My RLS is severe and I have tried many things. I had way too much rebound effect from Sinemet and Permax made me sick. I also tried the Tasmar along with the Sinemet, but it did not work. The only problem I have had with the Requip is that I get real slepy right after I take the first dose of the day, which for me is right after lunch. I understand that not many people experience this (so I'm told - I'd like to hear from others). Also, if I can manage to stay real busy right after that first dose, sometimes (not always) I don't get so sleepy. the latter doses however do not bother me. I take 3 x .5mg 3 x a day. Of course I did not start off that high, but I've been at that dosage for quite some time now. I can't think of anything else to tell you about it. I hope I have been of some help. Please feel free to contact me as often as you wish if you have any questions at all. I applaud what you are trying to do for your mother and I wish you the best of luck. Good luck & God bless, Ninette Hi Barbara! I started taking Requip about a month ago and was doing fine taking it 3 times a day with meals until 2 nights ago when my legs started to jump again. I got up after an hour and took another pill (.25mg) and went back to sleep. I'm seeing a new neurologist next Monday and I'm trying to figure out what to do if the increased dosage doesn't work. I'll keep your fingers crossed that it helps your mom. I did have some initial side effects.... back ache, upset stomach, itching. Hope this helps! Hi, I did not find that permax did much for me either, sinimet worked but too much and you have other problems. The doctor has me on 3 mirapex a day and I feel better if I take less I felt like my arms and legs ached more, but each person is so different and you just are desperate to try anything that give some relief. Good Luck and I have been there with my Mother, so understand what you are going through. Blanche Subj: Requip (ropinirole) Date: 2/8/99 2:46:21 AM Eastern Standard Time From: jruppen@... ( & Ruppenthal) I've replied individually to some of you regarding Requip (ropinirole) ....this is a relatiely new dopamine agonist, suggested by my neurologist, used to treat Parkinsons Disease and effective for some RLS sufferers. I've been on it for several months with more relief than the numerous other meds tried, with fewer undesirable side effects. My current dosage is two tabs of .25mgm an hour before bedtime along with one tab of Tylenol and Codeine...and about 1:00 AM when symptoms reappear, I take anothr one .25 mgm of the Requip plus another Tylenol and Codeine. At the onset of treatment I was able to get by with a smaller dose of Requip, but like some other drugs, I've had to increase the dose slightly for relief, due to tolerance. I'm averaging 6-8 hrs of sleep a night in comparison to 2 before! I've tried using it in the daytime, however, especially when traveling, and haven't found a suitable dosage. It's either too little or too much! Will let you know if I work this out. Windtree/, 60, Wis From: ninettecampbell@... (Ninette ) Jeanne, Hal and those interested, I take Requip (Jeanne asked for suggestions other than Mirapex) and have had excellent results. I'm certainly not suggesting that anyone should take this, just relating my experience. Questions? I'll be happy to answer what I can. Ninette - 51 - TN Barbara, I also had a significant improvement when I began taking B12 shots. However, it didn't last, only for about 2 months. My dr. was also puzzled by this. I am convinced there is some kind of connection since one known cause of rls is anemia. But I am probably not qualified to make that assumption. I do know it was not a placebo effect because I didn't start the B12 shots for rls. I had other dificiency symptoms i.e.; frequent canker sores. I do not understand why it had an effect on the rls only when I was building up on the B12 stores. Hope this helps someone out there. Thanks, Chris I have been taking mirapex .125mg at about 8:00 at night for about 3 months. It has been wonderful! I was on sinement but the augmentation was so bad that I could hardly sit still during the day and sometimes woke up very early with terrible RLS. Was nice to sleep at night but there are times one has to sit still during the day!ie; meetings, riding in a car, etc. So I usually had to take hydrocordone for those times. With the mirapex that is all I ever have to take. It is so good it makes me nervous! Because other things have worked for awhile and then guit. I too am B12 deficient and take shots monthly. My dr. thought I might have to take a larger dose of mirapex-.25 but so far this works fine. I have no side effects. Hope this helps! God bless. Chris From: wildthang27@... (Debbie A Rupp) Sorry to hear about your Mom. I hope this is not to late for you. My Mom is 82 and takes Mirapex. She has been taking it for several months now and has severe RLS/PLMD. THe Mirapex has helped her tremendously, she still has occasional nights where it doesn't seem to work, but for the most part she is much more comfortable and able to deal with life better. Hope this helps. Good luck to your Mom. Debbie I am one of the group who has been taking Mirapex since June with very good results. I do have insomnia from it, but I don't mind being awake too much when I can at least relax and lie in bed with no RLS. I take Vicodin that helps me sleep most nights. I generally feel better than I have for years. I too have gone through Sinemet (rebound and augmentation) and Permax (nausea) and am very happy with Mirapex. Perhaps of more significance to your mother's case is a comment my GP made during my last visit. He called Mirapex a " good drug " and said that his Parkinson's patients are doing well with it also. I have actually decreased my dosage from 0.5 mg to 0.375 mg per day. For my RLS I take it in divided doses during the evening. I recently started starting earlier to see if it helps the insomnia. It's too early to tell if that helps. Good luck with your Mum.--, 52, Western NY state. Barbara--I took Sinemet and almost immediately, like the next day, started having rebound during the day in my arms even when I would just sit down in the recliner. Took Mirapex for a week or so and got a urinary tract infection. Stopped taking it for about two weeks and went back to the Sinemet or Darvocet and Klonipin. Two weeks later I tried the mirapex again. Got another uninary tract infection. After the Sinemet became so intolerable and I wanted to quit taking the Darvocet, I began the Mirapex again, .125 to .25 at bedtime with two capsules of cranberry which I got at the health food store. I went down to one capsule when I didn't have any symptoms for about a week and now only take one capsule about two or three times a week. Still take the Mirapex. Have been doing this for about a month now and no sign of urinary tract infection. Ferritin Levels? Hmmm. Have I missed something? Could this be a cause of RLS? I'll ask my Neuro about it if it helped your mom. I have a friend with Parkinsons. He takes Mirapex, too, and is doing much better now since taking it now for about six months. I don't know what he was taking before. We share stories about the Mirapex. I feel for him and feel blessed to *only* have RLS and not Parkinsons. *My* mother used to tell me when she was living, " Honey, be thankful for what we have because there is always someone that is worse off than we are. " I hope your mother does well and gets the medication that is right for her. Take care of her. Lindy B. (49) in Southeast Texas I to am taking sinemet for restless leg, along with permax, 0.25mg at bedtime with good success. I have not heard of the other drugs u have mentioned. I have also found that when my potassiun gets high I'm ready to climb the walls with my legs. Good luck with your mom. Dear Barbara: I've been on Mirapex for 10 months now, and my symptoms are 80% relieved. I take one at about 6:00 PM, as it did cause insomnia when I take them later. I am a recovering addict, so I cannot take sleeping pills, or any pain medications at all. So for me, this had to work, or I was in big trouble! Being the age that your Mother is, she should not be on any sedatives if she can help it. Mirapex did stop working for a few weeks. I had to up my dose to two a night, one in the middle of the night. But it started working like a charm again, and I am back down to one again. I've had no symptoms during the day, as I did with Sinimet. For the first two weeks on Mirapex, I experienced frequent urination, dry mouth, and increased appetite. I had aching behind my knees. But then, they left me. And I have not felt better in 15 years... I take 0.125 mgs. The prescription is written as such, Take one tablet to start. May increase to 1 tablet three times a day. I increased after several weeks to two. Good Luck Barbara, God Bless your Mom. Don't know if this will be of any help but I have been taking Mirapex since May 1998 and hve found tremendous relief. I am taking 0.125mg 2 times a day. One in the morning and one at night before bed. I still do not sleep through the night but do not have to get up and wlk around to relieve discomfort. I would also have a problem at work and that is gone. Would be glad to answer any questions you may have that might help your mother. Well I have had some stiffness in my legs at times in the past but not recently. I have had sleep problems for a long time including sleep walking which improved as my anemia did. Nothing else that I could attribute directly to Mirapex. Good Luck tomorrow. Sonya White NY Dear Barbara, i have been taking mirapex about a month now. I did have problems sleeping the first tried mirapex, I was taking all 3 pills at night. I now take then 1 pill three times a day and have less problems sleeping but do have some muscle soreness I think is from the mirapex. I stopped taking it a while and had less muscle aches, started back and the soreness returned. I hope this will help your mother. 37 Arkansas Hi, I have been taking Mirapex for 3 months and I feel for me it has been much better then permax, I also take tylenol w/coedine#3 and a 1/2 tab of sinemet. I have had the RLS most of my life, my Mom had it and mine is a case where it's there every night. and becomes painful, I think you have to try it and see how she does, let me know if you want more information. Good Luck Blanche Fox I tried Mirapex after Sinemet started becoming ineffective and an added dose only made things much worse. I built my dose of Mirapex up as prescribed, 1-2 weeks of .125mg.; 1-2 weeks of same twice/day; 1-2 weeks of same three times a day. No relief and boy did I get sick!!! Yuk! I'm now trying 2 darvocets at night with another earlier in the day, if needed. Better, but I still pound on my legs before the evening is over. Subj: Mirapex/Headaches Date: 3/17/99 2:25:01 AM Eastern Standard Time From: Miklinkat@... To: rlssupport (AT) onelist (DOT) com From: Miklinkat@... I couldn't wait till mirapex came on the market. I started taking 1/2 of the lowest dose in the early evening. I started having a terrible headache at about 4pm every day. I thought it was the mirapex wearing off or blood level getting low. I tried adding another 1/2 tablet of it and the headaches became 24-7 (as the newest phrase states) and went away when I stopped the mirapex all together. So now it's back to Sinemet. I know it works great for lots of people but I couldn't tolerate it. I was so hoping. . . Sweet Dreams to all. O, 51, Medford, Oregon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 1999 Report Share Posted April 6, 1999 ---------- > > To: Serdikof Serdikof@...> > Subject: Re: Mirapex > Date: Tuesday, April 06, 1999 6:53 PM > > I could not tolerate Mirapex because of the insomnia and currently take no > prescription meds. Several people in this group have reported similar > results. I have heard (Southern Calif RLS Support Group Physician) that > Requip, which is in the same class of meds, may be tolerated better by some > but I have not heard of many in this group using Requip. Some individuals > report using Ambien, Xanax, etc. to counter the insomnia of the Mirapex. > Personally I don't want to do this but would like to try to find an > alternative to the MIrapex. Let me know what neurologist recommends. > Thanks. > > , age 50 (Houston) > > ---------- > > To: RLS support rlssupport (AT) onelist (DOT) com> > Subject: Mirapex > Date: Tuesday, April 06, 1999 1:30 PM > > I have been taking mirapex for rls for about six months with great success > .. However, my insomnia has worsened since taking the drug. I need to know > whether this is a side effect of the mirapex, or may have other causes > (diet, change of seasons, etc.). I know that many people in this group are > taking mirapex, and I would very much appreciate your experience with it > and with insomnia. I see my neurologist next week and need to be armed > with information. Thank you all. Kathy, 56, PA > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 1999 Report Share Posted April 6, 1999 Kathy, Have been taking Mirapex for a year, and insomnia seems to be a side effect for me. Despite this, It still helps the most,overall, of anything else I've tried. ne, 59, Lawrenceville, NJ ___________________________________________________________________ You don't need to buy Internet access to use free Internet e-mail. Get completely free e-mail from Juno at http://www.juno.com/getjuno.html or call Juno at (800) 654-JUNO [654-5866] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2013 Report Share Posted January 27, 2013 Just found a doctor who actually has heard of rls. I am just trying Mirapex, but now I am wondering, should I just stop the Permax completely or taper off while I am adjusting to the Mirapex. Has anyone been on both? I know I could ask the doctors but they don't have the experiences we do. So does any one have suggestions. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.