michelle
1 post
Apr 02, 2007
10:29 PM
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I am 38. I was diagnosed last May. Since September I've taken Mirapex. I'm up to 1mg 3xday. Sometimes in the morning I take 1.25 to 1.5 mg. If you look at the warnings for Mirapex, it says that you can suddenly fall asleep without any warning even a year after you started taking it. How real is this? I have 2 toddlers and I do drive them around. Also, I have lost 15 lbs since Sept. I think it is related to the Mirapex, but I'm not sure. Any insight? I was pretty thin before this, so the change is pretty abrupt. Also, should I be taking sinemet? Most YOPA sites recommend against sinemet (for as long as possible), but I heard that a new study shows that long term use of sinemet is ok. What to do? BTW, I'm looking for a new neurologist, so I currently don't have very good guidance on my medication. Any suggestions are welcome.
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michelle
2 posts
Apr 03, 2007
10:16 PM
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I just have to add a note - I did read the previous posts about piling on the weight. It sounds like other people started out losing weight with mirapex. How long before they started to gain?
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shakykmz
8 posts
Apr 04, 2007
9:05 AM
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Michelle, Hi! I was on Mirapex for a year when the side effects started to show - weight gain - I began to crave sweets like crazy, significant swelling in my feet, ankles and lower legs, I was shopping for things I really couldn't afford and most significantly to me - the sleep attacks. I was getting extremely sleepy while driving to pick my daughter up from school, I even got to the point where I would think to myself - ok, I will just shut my eyes for a second, thats when I knew I had to cut back on the mirapex. I am slowly weaning off of it, and the swelling is almost gone as are the severe sleep attacks. The side effects crept up on me slowly, I didn't just "fall asleep" without warning - it started gradually, but by being aware of the dangers you should know when the mirapex starts to cause sleepiness. And remember - everyone reacts differently to medicine, so by being informed you are forearmed against going to long on Mirapex. I was taking 1.5mg/3x day. You mention looking for a new neuro - where are you located? As a side note, the Mirapex did help my rigidity a lot - and by weaning off of it I feel much stiffer moving around, so the Mirapex does have some benefit. Please email me if you have any questions at steeplechase@neo.rr.com. Hope this helps!
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pdbyrd
20 posts
Apr 04, 2007
8:15 PM
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I first took Mirapex in sept and have lost close to 15 lbs also. I think it is the meds, my mds doubts it. I am fine right now but ten more lbs and i would be too thin. She didn't seem concerned - but she doesn't realize that I am eating everything- no dieting and little exercise. Maybe it stabalizes with time.?? Also, the drowsiness was bad at first but I titrated up so slowly that it does not affect me now at all.
Last Edited on 4-Apr-2007 8:24 PM
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michelle
4 posts
Apr 04, 2007
10:12 PM
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Thanks to both of you for responding. I had no idea that mirapex has so many different side effects or that you have to wean off it - not just stop taking it. My neuro did a great job diagnosing my PD, but, once it was diagnosed, he gave me an 8 week starter kit for mirapex and requip and set me free. I left him a message about the weight loss thing and he said it was because I was nauseous. That makes no sense because I'm not nauseous. So, I need a new neuro asap. I live in Sunnyvale, CA. That's really close to Stanford, so there must be some YO PD specialists around. I am really glad that I posted to this site. There is a lot of great info here.
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shakykmz
9 posts
Apr 05, 2007
5:27 AM
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Michelle, Make sure you post a message on the main message board about wanting a new neurologist in your area, a lot of people read just the main message board, so you may be able to get more than one referral. Take care! Kathy
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jma
12 posts
Apr 05, 2007
6:34 AM
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Hi Kathy,
I have had the same problems with Mirapex and am on the same dosage as you. Did you cut down on Mirapex and then replace it with something else? I am starting Azilect with the hope of reducing my dose of Mirapex to reduce edema and weight gain issues.
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shakykmz
10 posts
Apr 05, 2007
4:23 PM
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HI! I was on 1.5mg/3x a day or a total of 4.5 mg a day. I am still slowly reducing, down to 1mg/3x day (I am doing this for 4 weeks), the going down to 1/2mg/3x day(for another 4 weeks) then going off of it. It took almost two weeks for most of the swelling to go away. I noticed an almost immediate difference in my state of mind, I didn't even realize how clouded I felt until I reduced the Mirapex, I feel like I am finally out of the foggy feeling I had on the larger dose of Mirapex. I just started Azilec too and haven't noticed a big difference yet. My neuro may add in requip after I am done with the Mirapex, but isn't sure because of Requip being so similar to Mirapex. I also take Parsitan for tremor, only available in Canada, with an rx from your neuro. If you have edema you really should talk with your neurologist and see what he/she has to say. Please let me know if you have any more questions, hope this helps! Kathy
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MarkComes
Pharmacy Forum
93 posts
May 09, 2007
6:41 PM
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I am not sure who I am supposed to respond to. Please post again. Thanks, Mark
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dsamuels
1 post
Jun 12, 2008
7:07 AM
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I noticed that the last message I see posted was 2007, is anyone posting to this currently?
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ThePharmacist
39 posts
Jun 17, 2008
7:51 AM
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I respond weekly to any and all questions. Mark
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zengxu
1 post
Nov 19, 2009
5:09 PM
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Last Edited on 28-Jan-2010 3:42 AM
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zengxu
2 posts
Nov 19, 2009
5:11 PM
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CONTENT DELETED BY WEBMASTER.
Last Edited on 28-Jan-2010 3:44 AM
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zengxu
3 posts
Nov 19, 2009
5:13 PM
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CONTENT DELETED BY WEBMASTER.
Last Edited on 28-Jan-2010 4:25 AM
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ThePharmacist
440 posts
Nov 22, 2009
8:20 AM
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this is uncalled for and a waste of time for all of us. There are people here so need help and their time is wasted reading this type of material. You may not understand that those of us with pd, unfortunately, do not have the long quality of life many others do. Out of respect for us, please refrain from this. To you it may seem like game. To us it is a game, a VERY SERIOUS GAME. Thank you
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GemmaCh20
1 post
Jan 27, 2010
2:39 PM
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Last Edited on 25-Feb-2010 1:34 AM
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ThePharmacist
507 posts
Jan 29, 2010
9:45 PM
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I'll pass.
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add
2 posts
Feb 24, 2010
9:39 PM
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Last Edited on 25-Feb-2010 1:35 AM
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ThePharmacist
537 posts
Feb 28, 2010
10:26 AM
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Thanks to mark davis for helping to clear out the "problem" people. Thanks again, Mark C
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mdavis5231
455 posts
Feb 28, 2010
11:17 AM
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Mark C: you are most welcome, my good sir. thanks for your patience. to emulate one of my personal heros, Keith Olbermann, I put up the "worst post-er's" list, and welcome any nominations.
Mark D
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shell
9 posts
Mar 03, 2010
3:08 PM
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Mark D, it's been my experience that certain individuals crave attention and that is why they enjoy messing up message boards. Posting their names in red may just instigate them to continue. Just my two cents...
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mdavis5231
458 posts
Mar 04, 2010
3:13 AM
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shell: you make an excellent point. so far, knock wood, it's been pretty quiet since the box of shame...but these people are vandals, and I don't have a clue if cause and effect behavior is their M.O. guess we'll see. Mark D PS please feel free to e-mail me at "mark@yopa.org" to report spam, ask questions, offer opinions, etc. - I will likely see them sooner than here. doesn't mean I will REACT sooner (grins), but hey, I'll see 'em. cheers!
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ThePharmacist
543 posts
Mar 13, 2010
7:19 PM
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Cheers to all of us for dealing with this disease and still having a sense of humor. Best of health and humor, Mark
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