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Old 02-23-2010, 12:33 PM
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Conductor71 Conductor71 is offline
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Conductor71 Conductor71 is offline
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Join Date: Jul 2009
Location: Michigan
Posts: 1,474
10 yr Member
Default Metabolism

Quote:
Originally Posted by Isis View Post
Laura, that is great news and has encouraged V enormously.

A few questions -

How much Sinemet do you take and how do you schedule them into your regime?

What else do you take in addition to the DXM?

What problems did you have with Azilect?
Isis,

Godsend, YES! I'll second that. I went 12 hours yesterday tremor free! I am on day two with even less Propranolol and doing just as well (I took .5 to help control drowsinesss).

I have never had a tremendously long interval with Sinemet dosages. Before my pregnancy I could go to 4 hours, after delivery of my son, I dropped down to 2 - 3 hours. I believe that it is more beneficial to us to take a lower dosage of Sinemet more frequently (this is prevailing belief based on research and practice) as it really puts us in a state more akin to what we had going when healthy. I currently take:

three times daily

2 mg Requip
1 Sinemet 25/100 (supplemented every 2-3 hours to stay on)
1 Sinemet CR 25/100
5 or 10 mg of Propranolol (morning only) since yesterday

All this really does is keep me fluid. I do take 1/2 a Sinemet regular as needed to stay "on". This works well for me, but I do get dyskinesia when I overlap doses or take an extra bit of Sinemet if things wear off at work and I can't kick back on right away. I teach kids ages 5-11 and always have at least 25 pair of curious eyes looking at me.

I am trying to work on getting a morning dose of Requip at 3 mg into my system but can't handle the nausea. I have had that dosage work and it puts me back to baseline at the 4 hour mark with regular Sinemet.

I had a horrible experience with Azilect. First, I ended up with a rare side effect in younger onset people that results in severe joint pain. I looked and felt like an arthritic 80 yr. old when I woke up in the morning and found I had to take Ibuprofen every night because I ached. Stopped the Azilect and the pain disappeared. This drove me to the brink because at first I feared it was disease progression!

When I was on Azilect, I also took Mirapex and Sinemet. My doctor never advised me how to lower the levodopa, so I ended up with severe peaks and troughs in dopamine. When it peaked, I buzzed around the room, was manic, and delusional (in the sense that I was a little too happy). I crashed in between med dosages with tremor and mainly a numb painful tingling pins/needles feeling in my hands and feet also had disablind dizziness. The pins/needles stopped with the Azilect and the dizziness ended with the Mirapex.

What dosage of Propranolol is V taking? Does he feel it helps his tremor at all? Tell him to hang in there! I was maxed out on Sinemet and my doctor was pushing brain surgery just two months ago. If I can get a med regime together that works, there has to be something for all of us. Just keep trying

Imad, glad I'm not a guy for that very reason!! Mainly, the Propranolol makes me drowsy, so I am going to see if I can get by with just 5 mg. I hope you find something that works for you and soon!

Laura
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