Parkinson's Disease Tulip


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Old 12-23-2011, 02:47 PM #1
lurkingforacure lurkingforacure is offline
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Default sinemet four years later

We've been on this stuff for almost four years now and are realizing that it really does not help that much. And thinking back, it never really did. We kept waiting for that honeymoon everyone walked about, but never got it. For those of you out there feeling the same way, you are not alone.

We have found that mirapex, for all of the negative articles you read about it, provides us the most benefit. It smooths rigidity, helps with tremor, alleviates pain (probably because it's helping rigidity), helps with mood (probably because the pain is less!), and more. The sleepiness you get when you take it is bad, but splitting it into smaller doses more frequently helps with that. We don't even take the 4.5mg daily max, but much less.

I also thought I'd mention this since sinemet is prescribed as a diagnositic tool: take this sinemet, and if you feel better, you have PD. That is not always the case. We take sinemet and often feel NOTHING. I have started to wonder of late if we really do, in fact, have PD, but that's another deal.

The question I have is, if sinemet doesn't really seem to help you (but the other PD drugs do) why even take it? I know you can't just abruptly stop taking sinemet, and cannot imagine asking your neuro to help you wean off the gold-standard PD drug, but if it's not really providing benefit....
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Old 12-23-2011, 09:08 PM #2
made it up made it up is offline
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Quote:
Originally Posted by lurkingforacure View Post
We've been on this stuff for almost four years now and are realizing that it really does not help that much. And thinking back, it never really did. We kept waiting for that honeymoon everyone walked about, but never got it. For those of you out there feeling the same way, you are not alone.

We have found that mirapex, for all of the negative articles you read about it, provides us the most benefit. It smooths rigidity, helps with tremor, alleviates pain (probably because it's helping rigidity), helps with mood (probably because the pain is less!), and more. The sleepiness you get when you take it is bad, but splitting it into smaller doses more frequently helps with that. We don't even take the 4.5mg daily max, but much less.

I also thought I'd mention this since sinemet is prescribed as a diagnositic tool: take this sinemet, and if you feel better, you have PD. That is not always the case. We take sinemet and often feel NOTHING. I have started to wonder of late if we really do, in fact, have PD, but that's another deal.

The question I have is, if sinemet doesn't really seem to help you (but the other PD drugs do) why even take it? I know you can't just abruptly stop taking sinemet, and cannot imagine asking your neuro to help you wean off the gold-standard PD drug, but if it's not really providing benefit....
If you feel it's not helping I'm not sure what others think of this but my thoughts are you could titrate off it over a period of time.
You don't mention the sinemet dosage but say its 300mg daily try 250 or 200 mg for a week and decrease that way.
I've gone from taking a much larger dose than that per day and titrated down (post DBS) with no ill effects.
Having said that I'm a fan of sinemet and resisted taking it for many years after diagnosis and regret holding out for so long as it gave me a much longed for feeling of normality.

Merry Christmas
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Old 12-24-2011, 04:42 AM #3
boann boann is offline
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Default to each his or her own - mine is mirapex

based on everything i have read, particularly as young onset, there is no way i would be where i am today, pursuing a masters at at an ivy league university, 15 years post-onset and 11 year post dx (not to mention 25 years after completing my undergrad degree!) if i had been put on levodopa 10 years ago instead of mirapex. i thank my lucky stars that my neuro made that choice for me, because i was totally uneducated at the time; and i thank my lucky stars that my symptoms are such that i can forego levodopa. and i would take whatever disability i have experienced as a result of foregoing levodopa over the short term benefit i might have gained from it any day off the week.

when i count my blessings, this is one of them. we each choose the best path we can based on circumstances and available info. i am fortunate that my path has been as good as it has.
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Old 12-24-2011, 10:58 PM #4
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Are you taking a generic form of sinemit? I have found the real sinemit, although more expencive works best on me.
best Geraldo
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Old 12-25-2011, 09:35 AM #5
soccertese soccertese is offline
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requip and mirapex turned me into a zombie even at less than 1mg a day, i tried mirapex for a year.
maybe the xl versions might be better but i certainly would not demonize sinemet.
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Old 12-25-2011, 10:47 AM #6
lurkingforacure lurkingforacure is offline
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Default name brand sinemet

We tried the generic sinemet but it was even worse, and take name brand. Maybe it's progression, I don't know, but it just doesn't seem like we ever got that "almost normal" feeling honeymoon period when we started taking it.

We also tried the mirapex XL, no go for us. That rather large dose up front, even though "extended release", made the whole sleepy thing rear its ugly head again and we didnt' feel it did as well as the frequent mini-doses we had been taking, so went back to those.

I don't mean to demonize sinmet at all; I know it works wonders for millions. Just like mirapex works wonders for many, but is horrible for others. We are all just so very different and I'm grateful there are at least some choices. Not great ones, but at least some choice.

I just wanted to mention this in case anyone else out there experiences anything similar. For us, the sinemet, even name brand, it just not that helpful...and of course we get all the lovely side effects that come with it even though the benefit is marginal/questionable.
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