Parkinson's Disease Tulip


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Old 03-19-2009, 02:47 PM #11
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I took 4 mg. a day for a couple of years, and, yup, put on 30 lb. and maxed out my credit cards, bought a couple of new houses...a disaster! The scarey thing is, it all made sense to me at the time and my doc never gave me any info or asked any questions about my reactions to Miraoex - it came to light when I was answering questions for some research. All of my behavior in addition to the fact that my dad had been a compulsive gambler, etc. Plus the ankle swelling and pain. Now I take a couple of mg. a day - .5mg 4 times a day plus Sinemet and it's much better. Except for the credit card problem - I'll be paying these off for years.

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Old 03-19-2009, 03:02 PM #12
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Default mirapex.....

Hi
I have been on Mirapex for 4 years, with a dosage of 3mg total, 1mg three times a day and it was a great help. I did have hair loss, insomnia, but not to the extent of concern. Of late, I think the side effects of Mirapex are more stronger and I see changes in myself that are of concern.. The only new thing added to my Meds is Azilect. That might have changed my previous need for mirapex. So, I tried titrating it down to 2 doses or 0.5mg three times day. Its not working. I feel like I am addicted to Mirapex.

Has anyone noticed a similar pattern in mirapex usage?

Rosebud and Fiona, did you just go off mirapex or replaced it with requip or some other agonist?
Thanks
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Old 03-19-2009, 04:21 PM #13
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It is very hard to get off Mirapex. It is extremely addictive, and very insidiously powerful. After maybe 5-6 years of taking 4 to 4.5 mgs. daily, I switched overnight to 1.5 mgs. and a LOT of Stalevo. That actually was ok-ish. But I think that Mirapex gets more powerful or something the longer you take it. At that point some of my symptoms abated a little...

But then my doctor tried to switch me overnight from Mirapex to the Neupro patch (4 mgs.), and after ten days I wound up in the emergency room. Then he put me back on the Mirapex, and we tried again, exchanging gradually to 6 mg. of the Neupro over an 8-week period. Then they recalled the Neupro patch, and wanted me off it overnight. What a nightmare. My doctor wanted me to go on Requip, but to me that sounded like Mirapex in a slightly different costume, so I said no.

It's hard to quantify exactly, because at that time I went to Spain and got the permanent ear implants. I also was working with various alternative things like ozone IV's, and all kinds of other off-the-beaten track sorts of things. But now, a year after stopping Mirapex, I am not taking it, or Neupro or Requip or what have you. Just Sinemet and Stalevo, and some Amantadine. I recently started low dose naltrexone, and since then have been able to reduce my Sinemet about 20- 25% in a very short period of time ( a month or so).

I won't say it was easy - the depression is mind-boggling. I control it with positive thinking, prayer, exercise, as much social support as I can muster, trying to deliberately cultivate pleasurable experiences.....it's ALL important, because the task is huge. But it can be done. And I now sleep a very nice 7-9 hours nightly, have a clearer mind by far, and have stopped the obsessive behaviors. Oh, and my off periods have gotten better, and the dystonic episodes milder and now even considerably less frequent. I take lots of supplements like curcumin, as well. As difficult as it's been, I have no regrets about taking this path.

I know it does help some people, and god love you, I think that's great. But it just goes to show that there is extreme variation in our conditions and effective treatments, which really calls into question in my mind the value of the search for the definitive cure which will overnight transform the face of the disease. More complexity to it than that, but then more possible solutions and approaches, too.
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Old 03-20-2009, 12:36 PM #14
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Default Thank you!

I was caught off guard by the depression I found myself in with stopping the Mirapex. I literally wanted to die, and everything that was not perfect in my life became painfully unbearable, literally overnight. I am going to go through the rough stuff, and I can see a light at the end of the tunnel. Thank God for those who love me and are hanging in there with me.

Fiona, thank you for talking about the depression. Knowledge is power. If you can do it I can do it. I agree, requip is just another version of Mirapex. For those of you still on it, when the day comes that your meds are no longer working the way you would like, take a good look at the Mirapex first. I did quite well for about 6 years.
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Old 03-20-2009, 01:13 PM #15
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Quote:
Originally Posted by rosebud View Post
I was caught off guard by the depression I found myself in with stopping the Mirapex. I literally wanted to die, and everything that was not perfect in my life became painfully unbearable, literally overnight. I am going to go through the rough stuff, and I can see a light at the end of the tunnel. Thank God for those who love me and are hanging in there with me.

Fiona, thank you for talking about the depression. Knowledge is power. If you can do it I can do it. I agree, requip is just another version of Mirapex. For those of you still on it, when the day comes that your meds are no longer working the way you would like, take a good look at the Mirapex first. I did quite well for about 6 years.
Im sorry to hear you are having such a tough time my dear friend..Hang in there!..My thoughts and prayers go out to you
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Old 03-20-2009, 02:47 PM #16
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hey rosebud, sorry to hear you are having such a difficult time. Keep reaching for that light. If you have trouble finding it just ask me I have a powerful flashlight you can borrow

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