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Sinemet - Mirapex - quitting

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Unread 04-14-2009, 09:16 AM   #1
dsiebenh
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Default Sinemet - Mirapex - quitting

DX with MS in 1999 after 10 years of issues. Dx with Lyme in 2004.

From 1999 to 2008 I took Sinemet for my restless uncoordinated legs, between 2 - 8 tabs of 25/100 per day. Mostly around 4 tabs. As predicted by the prescribing neuro, it lost effectiveness after 9 years.

I switched to Mirapex from Sinemet in March 2008. Started having more problems walking in July 2008. Finally weaned myself completely off Mirapex in January 2009 after reading Once Upon A Pill about the horrors of Sinemet and dopamine supplementation. Weaning took about 4-5 months.

I now take Baclofen or Zanaflex for the legs.

My legs are still very stiff, tired and uncoordinated. I realize my disease has advanced in the last 10 years, but I do expect to regain some leg functionality in the next year as my body learns to manufacture and process dopamine on its own again. From what I have read this can take over a year. But there is little info out there.

Has anyone else on this board quit Sinemet and / or Mirapex, and does anyone have any idea as to the timeline I am looking at to reestablish a normal dopamine system?

Apparently not too many non-Parkinson's people are "lucky" enough to get this rx, and fewer ever quit.

Thanks!
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Unread 04-14-2009, 12:11 PM   #2
mrsD
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Here is one post that discusses sudden stoppage of Sinemet:

http://neurotalk.psychcentral.com/sh...opping+mirapex
see post #6

The general impression with Mirapex is that it must be tapered slowly down.

I hope some members here will come on soon and give you a timetable for that.
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Unread 04-14-2009, 12:40 PM   #3
kk13
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Default Don't do it!!!

Quote:
Originally Posted by dsiebenh View Post
DX with MS in 1999 after 10 years of issues. Dx with Lyme in 2004.

From 1999 to 2008 I took Sinemet for my restless uncoordinated legs, between 2 - 8 tabs of 25/100 per day. Mostly around 4 tabs. As predicted by the prescribing neuro, it lost effectiveness after 9 years.

I switched to Mirapex from Sinemet in March 2008. Started having more problems walking in July 2008. Finally weaned myself completely off Mirapex in January 2009 after reading Once Upon A Pill about the horrors of Sinemet and dopamine supplementation. Weaning took about 4-5 months.

I now take Baclofen or Zanaflex for the legs.

My legs are still very stiff, tired and uncoordinated. I realize my disease has advanced in the last 10 years, but I do expect to regain some leg functionality in the next year as my body learns to manufacture and process dopamine on its own again. From what I have read this can take over a year. But there is little info out there.

Has anyone else on this board quit Sinemet and / or Mirapex, and does anyone have any idea as to the timeline I am looking at to reestablish a normal dopamine system?

Apparently not too many non-Parkinson's people are "lucky" enough to get this rx, and fewer ever quit.

Thanks!
I've written about this a few times at this website. It's a very long story and I don't want to repeat myself. You can search around NeuroTalk for the discussion. But, bottom line, I tried to slowly wean off sinemet for 5 years!!! Got down to 300 mgs and couldn't take it anymore! The pain and limitations on my mobility were unbearable. For all the miserable side effects of Sinemet - and there are plenty - it is a picnic compared to this weaning off process.
Yes, all cases are different and I suppose it's possible you might have better results. Just my advise: DON'T DO IT!!!
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Unread 04-15-2009, 08:12 AM   #4
dsiebenh
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Well, I've kicked Mirapex. I haven't taken Mirapex for 2 months after 5 months of weaning off it.

The issue is, has anyone successfully quit and how long did it take to restore normal dopamine function?
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Unread 04-15-2009, 03:12 PM   #5
Fiona
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I still take Sinemet but almost a year ago weaned myself off Mirapex over a period of several months. This is after taking Mirapex for nine years. It was really challenging on many levels, but I am certainly no worse physically, and in many regards much better than when I was on Mirapex. I don't think I could have done this without getting the acupuncture ear implants from the Werth Center in Spain. In the last few months I have even decreased my sinemet successfully by 25-30% with improved function. Keith's cautionary account is invaluable - we're up against some tough stuff. But also depends on how long you've been taking what.... But I am continuing to make my life as drug-free as possible.
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Unread 04-15-2009, 06:14 PM   #6
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Default I just got off Mirapex

I have been Mirapex free for only A FEW days. I worked for 2 months to get off it. 3.mg per day. I went through some fierce depression... that was the worst. Just kept chipping away at the dosage. was off for afew days and I added .25 back in twice a day. All the side effects came back. I will see my neuro on Monday. I do need some sort of boost for my Levodopa. Am currently still adjusting to the no mirapex ....my offs are longer, but much more tolerable. I can usually keep myself going pretty good until about 2pm.

Just go to bed and cover your head when you have had enough....it will pass.
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Unread 04-15-2009, 07:37 PM   #7
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I suddenly realized that I feel I should caution you, Rosebud, dear - I hope you gather as much emotional support as you can around you. I found the depression and anhedonia of Mirapex withdrawal just crushing, and I think that the depression alone could be potentially very dangerous. It's been about a year since I started the journey off, and things have definitely improved for me, but I'm still dealing with recurring, although considerably milder, waves of depression that I could very directly correlate with the Mirapex withdrawal.

In terms of the original question of this thread, how long does it take to regenerate natural dopamine - well, I don't think people have studied this hardly at all, and virtually no one tries it. And it's super-difficult, as Keith pointed out.....however, there are new adjunct therapies that can help, and new things are being learned all the time, so just because it hasn't been done doesn't mean it couldn't. I think most people around here are accepting of the prognosis of PD, which could be very accurate for them. For me, I have always felt that the diagnosis at age 32 was understandable, but that I was fed into a system of dealing with this condition without exploring other possible therapeutic approaches in a focused manner.

So it's an interesting question. My neurologist definitely doesn't believe that my natural dopamine function can return. But I think he's wrong.
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Unread 04-16-2009, 08:49 AM   #8
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Default Me too

I too think natural dopamine function can return, if only because I WANT to believe that, ha ha, but also because of the studies they are doing with exercise helping PD. The Cleveland Clinic is doing the study on tandem cycling, there are others out there, and there are MANY neuros AND PWP who see improvement when the patient undertakes, and commits to, an exercise program. What else explains the improvement, and sometimes reduction of meds, if not better natural production of dopamine? I guess one could argue that the brain is not actually making more dopamine, it's just more efficiently using what's in there, but to me, I would not quibble over such a difference. If one is able to feel better, without taking more meds, and oftentimes actually reduce the meds once exercise program has begun, something good is going on inside that brain at an organic, natural level.

Why don't they do a PET/SPECT or whatever it is scan WHILE someone with PD is actually exercising like crazy on the stationary bike to see what is going on? There are so many tecniques they now have to be able to see what is going on inside our brain, seems like those could be used in this way. Hello, MIT?
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Unread 04-16-2009, 09:02 AM   #9
dsiebenh
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Thanks all, I did read the other posts above previously, but the key question remains: how long does it take to restore normal dopamine function after quitting these drugs? It seems no one really knows, bit if you do please speak up.

I will bear witness to the fact that it is possible to quit these drugs, at least for a non-PD'er. It took me almost a year altogether. And be VERY CAREFUL quitting the Mirapex, let's just say that suicide seems like a viable option when your brain is starved of dopamine. It took me 5 months to get down to zero from a couple of tabs a day.

I quit too fast several times and it was not pretty. It took a full 2 weeks after the last Mirapex dose for the worst of the depression to kick in, when I tried to quit too fast.
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Unread 04-16-2009, 05:57 PM   #10
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Default from time to time

a post will appear on this website from some one who was misdiagnsed. One I remember was treated for PD for 15 years. What happened to their sinemet requirement ( remember "inhibition feedback" where your body stops producing the 'missing' element ...in our case, dopamine)?

Do they get off by going cold turkey, or what.

There was a woman from Ireland named "Muiranne" or something similar. She tried Keith Bridgemans program and got off all her PDdrugs. He has an L-tyrosine/B6 + more combo supplement that she said worked for her.
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