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Sinemet - Mirapex - quitting

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Unread 04-17-2009, 08:40 AM   #11
lindylanka
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Rosebud, I remember reading about this some years ago. This is the impression that remains. If a person without PD takes levodopa there is no defect in producing dopamine so all DA receptors are already 'taken' or active and accessible to the body's own dopamine. There is therefore no uptake of levodopa and it remains inactive in the body. Thus there is no issue and they can stop taking medication without a deterioration in health. This is v simplistic I know, and of course cannot vouch for accuracy! And we do not have the testimony of people who do not have a pd dx and who have nevertheless been given a sinemet trial (some last a considerable time) as PD is a possibility, and presumably get shunted on to a different specialist when there is either no response or a waning response, no followup information being recorded. My own experience of stopping sinemet in a controlled environment was that initially I 'felt' better (no side-effects) but was actually worse. By third and fourth day bradykinesia, rigidity, balance and near disappearance of voice were v obvious. On the other hand I was more motivated and clearer headed, and realised how much I missed being 'me'...... would however agree with Fiona, because I do not think that the neurons are neccessarily dead, or not till very late in pd progression. My neuro would also disagree, not enough is really known about the patient experience, and many questions never get asked because of the 'doctor as expert' mindset.
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Unread 04-17-2009, 09:05 AM   #12
Fiona
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Just thinking about all the contributions above - thanks to all of you - you know, it completely shocks me that more information hasn't been compiled about sinemet's actual effects, and that it is still used as a vague diagnostic tool. My neuro says a non-Pd'er will have no response to a sinemet pill. Somehow I don't believe this. It is so self-serving of the drug companies for the doctors to say that one of the most definitive diagnostic determiners is whether or not one responds to the medication. I have read that upon autopsy, it is conjectured that up to 25% of PD sufferers have been misdiagnosed - or maybe even more. Now that number includes those who never were diagnosed with PD, so didn't take sinemet and maybe could have benefited, but I believe it also includes those who were diagnosed and treated with levodopa therapy.

So surely the information is out there - and relatively accessible - that would provide answers to these questions. And surely more precise diagnostic methods could be used before condemning people to a lifetime of the wrong medication, that once commenced, they have no reliable medical help to reverse the steps, and may in fact have precluded the possibility of doing so.

The manufacturers sure don't have information about getting off this medication, and what to expect in that process, do they? That is just so irresponsible of them and the medical community. I think they could work a little harder at that rather than developing yet another crappy dopamine agonist. Grrrr!
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Unread 04-20-2009, 09:05 AM   #13
dsiebenh
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Quote:
Originally Posted by Fiona View Post
My neuro says a non-Pd'er will have no response to a sinemet pill. Somehow I don't believe this.
You are right to not believe your neuro. I was never dx with PD yet I was given Sinemet for Restless Legs Syndrome even before I was given a (bogus) MS dx.

Sinemet and later Mirapex had a definite effect in quelling the legs and making them more coordinated, even for a non-PD'er. At the outset....
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Unread 04-20-2009, 01:59 PM   #14
lurkingforacure
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I don't believe it either. Here's why:

1. MANY MANY PWP do not respond that well to sinemet, including several folks here who ended up having DBS, among other things...

2. because of #1, I personally believe that sinemet is a diagnostic tool of questionable value...it could leave somewith with PD without the correct dx, and could very well burden someone with a PD dx who actually does NOT have PD (evidenced by the autopsy results referenced in this thread, many folks taking PD drugs for years when they never had PD);

3. I have never read a medical article that said someone without PD would not "respond" to sinemet...and I don't buy it. I dont' know what the docs exactly mean when they say "respond", but since so many PDers DON'T "respond" to sinemet, when they technically should, how can someone claim that a non-PDer would similarly not respond? I would be more willing to believe that a non PDer would not respond to sinemet if ALL PDers responded to sinemet, but we know that they do not.
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Unread 04-20-2009, 03:42 PM   #15
reverett123
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A lot of the accepted "facts" about PD are just smoke. When ldopa showed up forty years neuros were so happy to have something that worked some of the time that they built a frame around it, hung up a cardboard sign with "Truth" scrawled on it, and went off in search of lunch. Figuratively speaking, of course.

The problem is that those guys ended up in the pub celebrating and never came back. Future generations of neuros and patients saw the sign and assumed that the guys who put it up knew what was what. It is only now being recognized that it was only a tiny part of a mysterious whole.


Quote:
Originally Posted by lurkingforacure View Post
I don't believe it either. Here's why:

1. MANY MANY PWP do not respond that well to sinemet, including several folks here who ended up having DBS, among other things...

2. because of #1, I personally believe that sinemet is a diagnostic tool of questionable value...it could leave somewith with PD without the correct dx, and could very well burden someone with a PD dx who actually does NOT have PD (evidenced by the autopsy results referenced in this thread, many folks taking PD drugs for years when they never had PD);

3. I have never read a medical article that said someone without PD would not "respond" to sinemet...and I don't buy it. I dont' know what the docs exactly mean when they say "respond", but since so many PDers DON'T "respond" to sinemet, when they technically should, how can someone claim that a non-PDer would similarly not respond? I would be more willing to believe that a non PDer would not respond to sinemet if ALL PDers responded to sinemet, but we know that they do not.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Unread 04-20-2009, 07:16 PM   #16
girija
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Default mirapex

Hi all,
I am in the process of lowering Mirapex and Sinemet. Thanks for all the advice. Fiona, Good to hear that acupuncture helped you to go off Mirapex. I think acupuncture is helping me a lot too. I completely stopped taking Carbidopa in the night and managed to bring Mirapex from 3mg to 1.5mg/day. I like to stop Mirapex completely, but I am just being careful and slowly weaning myself off that drug. So far, no major problems, just a few minor ones and I am able to recover from those within a few days. I take azilect and its working well for me. So my take on these adjustments in medication is that my neurons are not dead, just slowed down or lazy! Azilect is keeping dopamine from degradation and I believe acupuncture is inducing something in the brain. This combo with low dose of sinamet and mirapex (for now) and other nutritional supplements are enough to get by everyday..........but if I want to climb Mt Everest........

Girija

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Unread 04-20-2009, 07:59 PM   #17
Fiona
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Thanks, everyone, for the input. I have felt like a crazy person for years when I tell people that I don't think my cells are dead, but somehow dormant....

Girija, good luck to you, and don't worry about Everest, I say...(we probably don't belong up there anyway!) But I really encourage you to proceed with caution most particularly on the Mirapex. It seems like the most difficult one in many ways...and in ways you don't expect... But speaking positively, I'm down at least 25% on the Sinemet since January, and the thing is I am having far fewer off periods, and more manageable or predictable ones than when I took considerably more Sinemet plus Mirapex (plus I had to reduce my thyroid med, too...)....Just saw my neuro and he said seeing me was like watching a camera go in reverse. So not sure what it is that is really doing the trick- I'm taking the low dose naltrexone for the past few months, plus I had the ear implants ten months ago now, plus I take krill oil, Vitamin D, tumeric, a product called StemEnhance, rhodiola, and trying to be as positive as I can stand to be....something seems to be helping. Some of the symptoms seem to be shifting and morphing into others, but overall I am definitely improving clinically speaking. This is 18 years since diagnosis.

But as to the original question about how long it takes to restore natural dopamine, I really don't think the research has been done because they just haven't believed it to be possible. My guess is it varies tremendously and depends on many individual factors. Plus it's not just dopamine, but serotonin levels and other things, I'm sure...
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Unread 04-20-2009, 10:12 PM   #18
reverett123
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If I may veer slightly off topic....
Fiona, I have experienced a rapid turnaround of my own over the last week as I forced myself back onto a regimented supplement program and was interested in where our two overlapped. You mention krill oil - I (for the first time) have gotten serious about fish oil - both are high omega 3 sources. I have been taking 15 g (1 tblsp) per day, which I think to be a moderately high dose.

Some thoughts- Omega 3s are a strong anti-inflammatory, are fat soluble, and are a major building block of brain tissue. As Ron's tooth episode demonstrated, inflammation can knock the legs out from under a PWP. Perhaps this is the explanation? What sort of dose of krill oil are you taking?

Hmmm. I just did a quick pubmed search and there is enough to justify moving this to its own thread. Meet me there?


Quote:
Originally Posted by Fiona View Post
Thanks, everyone, for the input. I have felt like a crazy person for years when I tell people that I don't think my cells are dead, but somehow dormant....

Girija, good luck to you, and don't worry about Everest, I say...(we probably don't belong up there anyway!) But I really encourage you to proceed with caution most particularly on the Mirapex. It seems like the most difficult one in many ways...and in ways you don't expect... But speaking positively, I'm down at least 25% on the Sinemet since January, and the thing is I am having far fewer off periods, and more manageable or predictable ones than when I took considerably more Sinemet plus Mirapex (plus I had to reduce my thyroid med, too...)....Just saw my neuro and he said seeing me was like watching a camera go in reverse. So not sure what it is that is really doing the trick- I'm taking the low dose naltrexone for the past few months, plus I had the ear implants ten months ago now, plus I take krill oil, Vitamin D, tumeric, a product called StemEnhance, rhodiola, and trying to be as positive as I can stand to be....something seems to be helping. Some of the symptoms seem to be shifting and morphing into others, but overall I am definitely improving clinically speaking. This is 18 years since diagnosis.

But as to the original question about how long it takes to restore natural dopamine, I really don't think the research has been done because they just haven't believed it to be possible. My guess is it varies tremendously and depends on many individual factors. Plus it's not just dopamine, but serotonin levels and other things, I'm sure...
__________________
Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Unread 10-12-2009, 07:03 AM   #19
Boomer2202
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Default Sinemet and Mirapex

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 guess I was one of the lucky ones. I was perscribed Sinemet several months ago to confirm PD. Then I was perscribed Sinemet and Mirapex about three weeks ago. Two weeks ago another doctor told me to get off Mirapex, which I did by reducing .5mg every two days. So far no side effects or problems. Perhaps because I was only on a full dose of Mirapex (2mg) for a little over a week. Perhaps it is because I've only been totally off Mirapex for a couple of days. After reading about Mirapex and this thread I bless my lucky stars for having not really becomed "hooked" on Mirapex. I'm also in the process of getting off Klonopin (for another condition), but this will take six weeks to complete. Should I be worried about a Mirapex "backlash" or am I one of the lucky ones who got off in time?

Boomer
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Unread 05-08-2010, 09:32 AM   #20
bonkauth
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I have a sleep disorder PLMD...can you tell me how much Mirapex you were taking on a daily basis. My sleep specialist just told me to stop mirapex cold turkey....took .50 /night....and said I'd feel a bit better each day ....NOT.. I stopped the Mirapex because of impulse control disorder. It's been two weeks of mostly hellish days...anxiety/panic issues/depression/no energy.

Thanks, Bonnie






Quote:
Originally Posted by dsiebenh View Post
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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