sinemet & mirapex: i'm wondering who has... - Cure Parkinson's

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sinemet & mirapex

maulparking profile image
14 Replies

i'm wondering who has taken both sinemet and mirapex recently, then quit mirapex. i'm considering getting off mirapex and adding mucuma. am i nuts to consider this?

i started mirapex sep 2012 and take 1mg 2x daily.

i started sinemet nov 2014 and take 25-100 2x daily.

(dr. recommended 3x daily for each.)

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maulparking
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14 Replies
Hikoi profile image
Hikoi

Does your current regime work well? Why are you considering changing?

Pete-1 profile image
Pete-1

Stopping Mirapex is accompanied by very unpleasant withdrawal. Look up Dopamine Agonist Withdrawal Syndrome (DAWS). Probably search for the name in full. Searching for DAWS seems to result in completely the wrong stuff.

Levodopa (Sinemet, Madopar, Stalevo) and other generic names deliver Levodopa. Stopping any Levodopa based drug should be a lot easier than Mirapex but you still need to be careful (if stopping suddenly) of NMS (Neuroleptic Malignant Syndrome). Not very likely but worth taking precautions due to potential fatality.

Mucuna is just a natural (herbal) source of Levodopa which probably contains a myriad of other untested stuff.

nedster profile image
nedster in reply to Pete-1

DAWS is a frequently used acronym for digital audio work station. You'll get a lot of hits on that.

Pete-1 profile image
Pete-1 in reply to nedster

A train station is where a train stops, a bus station is where a bus stops. A workstation is ......... ?

lol

nedster profile image
nedster in reply to Pete-1

Clever!

maulparking profile image
maulparking

tx pete

moonswife profile image
moonswife

Mike started taking mirapex early for essential tremor. Within 10 years the diagnosis changed and Parkinson's (probably with essential tremor) was in full tornado like symptoms. Rx changed often and sinemet was added, both 25's and 50's. He also takes Comtan.

He was still working, but had a year of such bad shaking, even at rest, he lost 100 lbs. Due to many power tool incidents, DBS was considered and our insurance screening and testing took nearly a year to qualify him. After the stimulator was implanted the level of Rx fell significantly. But Dr Parky moves on and he is back on 1 mirapex in am and lots of sinemet. Still does well until Rx "wears off" then he stiffens.

Titrating off mirapex is tricky. Follow Dr and Pharmacy rules very carefully. Odd symptoms occur.

Your body will tell you if can use less sinemet. Agree with above comment, not sure I trust the macuna (Velvet Bean) sources for accuracy. Hard to test accurately.

maulparking profile image
maulparking in reply to moonswife

thanks much for the input. i'll keep you posted. my pharmacist and md friend are weighing in.

nedster profile image
nedster

Mirapex made me wacky obsessive and affected my sleep schedule adversely. I could only sleep about 75 minutes at a time, 2-3 times in a 24 hour period. When I stopped it, I caught up on all that lost sleep for some weeks. Bad medicine for me!

Joanne_Joyce profile image
Joanne_Joyce

I take both Myrapex and Stalevo. A few years ago I got the idea that Myrapex wasn't helping and was the cause of my dry mouth. My neuro agreed that I could stop the Myrapex but gradually reduce the dosage. By the time I stopped taking it completely I started having tremors which I don't usually have and by the next day I could barely walk. And my dry mouth was as serious as ever. Well, of course, I went back on the Myrapex and am still on it.

Was Mirapex prescribed for anything specific, I.e. Not just part of meds for PD?

BUZZ1397 profile image
BUZZ1397

Sounds like you are asking me because I did that recently, tapered off Mirapex and I was taking both meds. I only took Mirapex in the evening, for restless legs. If it helps I can tell you Mirapex was difficult to quit but I did by adding half an otc benadryl in the evening and gradually reducing the dosage of Mirapex over several days then just 1/2 a tab every other day for oh I guess it was almost 2 weeks before I found I was completely weaned off it. Afterward I lost some weight, I apparently had fluid retention from the Mirapex or the benadryl dried me up. You know my rings were looser and I'm not a big guy so losing 6-7 pounds was noticeable. The doctor remarked about it. I continue to use some benadryl as a sleep aid and I do not have restless leg. I am more alert and not as compulsive. I recommend asking your doctor about trying to reduce or wean off mirapex if your doctor thinks you might not need it.

maulparking profile image
maulparking

thanks for the tips...

fwes profile image
fwes

2009 PD diagnosis

2010 Meds: Carbidopa/Levodopa 25/100 x 3, Mirapex Er 1mg x1 and Azilect 1Mg x1 2012 Meds: Carbidopa/Levodopa 25/100 x 3, Mirapex Er 3mg x1 and Azilect 1Mg x1 2016 Meds: Carbidopa/Levodopa 25/100 x 4, Entapacone 200mg x4, Carbidopa/Levodopa ER 50/200 x 1, and Azilect 1Mg x1

About 2.5 years ago I experienced a marked decline, which it seems was a delayed side effect to prolonged use of Mirapex (6/2010-3/2014):

swollen legs, audio hallucinations, chest pain, occasional fast/irregular heartbeat, severe muscle pain/weakness, double vision and MOST IMPORTANT falling asleep suddenly during usual daily activities such as several times while typing and twice while driving (sleep occurred without any feelings of drowsiness beforehand).

I began a Mirapex withdrawal program approximately 2 years ago. The Good News is that for me, ALL of the listed symptoms have gone away. The Bad News was 6 months of severe fatigue. See posts on DAWS, such as

healthunlocked.com/rlsuk/po...

According to many posts, kicking Mirapex is like kicking a street drug. My Cardiologist exclaimed "You mean that they still allow this stuff on the Market?"

Most of my life, I have been an athlete and quite strong. I am now rather weak. Is this PD or old age or a prolonged consequence of Mirapex?

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