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Old 10-02-2008, 11:14 AM #11
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That's what I was thinking too but the doc seems to think Friday is a sufficient amount of time to gauge the effectiveness.

I'll tell him we're going to give it more time. He'll go along with that.

Let me ask you, does the nightly dose help your legs stay loose all day or only for awhile? Jim's legs usually loosen up by mid afternoon without Sinemet so I am curious.
It works for me most of the day. By late afternoon/early evening I am pretty tight. It depends on what I have been doing that day. I think, but not, sure, I used to take it twice a day, once in the morning and once at night when I first started. It was a long time ago (in MS years!) so I don't really remember. You know how it is with meds...so many, and so many different dosages! I do remember that the CR didn't work at all as advertised for me.

I would give it longer. When I went back on it, the doc had me stay on the Soma for 3 weeks while I transitioned back to the Sinemet. Just an FYI...
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Old 10-02-2008, 11:44 AM #12
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Thanks Cheryl. He woke up today with hardly any pain but the tightness is still there so I will make sure we give it more time. He's keeping him on Baclofen and Tizantidine even though I suggested going off them. He thinks Jim has not developed a tolerance. Whatever. lol
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Old 10-07-2008, 06:06 PM #13
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odd, my mom and sister take sinemet for tremors. It's weird how meds work for different things. I'd never heard of it for stiffness--does anyone know if it will work for extreme stiffness(contraction)?
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Old 10-07-2008, 07:14 PM #14
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Sassy, I don't know since it doesn't seem to be helping Jim yet. He has been taking it for a week and a day so far but hasn't noticed too much difference. What is working is the twice daily massages I am doing to loosen them up plus a little mj. I focus on the upper back leg near the buttock because that seems to be where the muscles are hurting the most. The top of his legs have the inside muscle contractions but don't seem as tight.

His stiffness is so tight that his legs are glued together by morning and I can't even massage them apart. Once his meds kick in and he smokes a little mj, then I can massage them apart.
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Old 10-07-2008, 09:40 PM #15
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Quote:
Originally Posted by SandyC View Post
Thanks Cheryl. He woke up today with hardly any pain but the tightness is still there so I will make sure we give it more time. He's keeping him on Baclofen and Tizantidine even though I suggested going off them. He thinks Jim has not developed a tolerance. Whatever. lol
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I take 2 25/100 tablets at night, not the 10/100...maybe he's not taking enough! I don't have near the tightness and stiffness that Jim does so maybe he needs to take a higher dose?? Just a thought...
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Old 10-08-2008, 11:23 AM #16
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The doctor doubled the dose so he's taking two 10/100. I'll ask him about it next time we talk to him. Jim and I playing around with the dose, taking it at night, taking it in the morning, maybe we'll try the afternoon. The doctor was adament about taking them at night so we'll see. Argh, it's so frustrating.
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Old 10-08-2008, 02:54 PM #17
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I really don't know much about the exact dosages, but be careful about too much dopamine. My mom has a disease that mimic parkinsons (which is caused by a reduced brain response to dopamine, but hers is caused by mini-strokes that restrict blodd flow to the dopamine receptors. When she was first being treated for parkinsons, they kept increasing the dose of sinemet to try to get her to respond to it. Instead, she went crazy...having hallucinations...telling us she was a movie star, or she was in jail, or was in college, etc.

As it turns out, the lack of dopamine causes parkinsons type symptoms, while too much dopamine causes schizophrenia. Because her problem was circulatory, not dopamine sensitivity, increasing the amount in her blood didn't help her motor skills, but it did cause her to become borderline insane.

Again, I don't know what her exact dosages were compared to the amounts y'all are discussing...but do be careful about how quickly you increase the dosage. L-Dopa and Carbidopa do take some time to become active in the brain, so you are wise to stay at a dosage for at least a week (preferably more) before increasing to a higher dose, lest you mistake the eventual improvement as a recent event related to the higher dose.

Good luck with it and I hope it works for Jim! My mom is on a relatively small dose still as it does have some benefits for her, but it hasn't helped her like it helps typical parkinsons patients.
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Old 10-08-2008, 04:22 PM #18
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Thanks TX! That is great advice and we appreciate it. The doctor said Jim could take the dose in the morning if it helps him more. Jim teased him and said "It's really the mj helping, I am just making you feel good." lol
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Old 10-08-2008, 06:18 PM #19
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Cheryl, the doc called today and up'd the Sinemet to twice a day to see if that helps Jim. I told him a friend of mine was taking two 25/100 at night and that your half Jim's size. I questioned if Jim was getting enough to see a difference? So, he agreed to up it and said everyone is different and give it two weeks to see any difference. I asked about the 25/250 and he said let's keep it at the 10/100 right now.

So, now he's taking two 10/100 pills twice a day. Our fingers are crossed. We are to call the doc back with a report in two weeks.
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Old 10-08-2008, 08:56 PM #20
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Batman makes a good point, that's why when the doc has me increase the dose, it's one pill at a time for a week. But I started out on the 25/100, for a week, then increased that to 2 25/100s. It's not the size that's the difference, I think it's the amount of spasticity that Jim has. I am not sure why his doc is being so cautious....but I am not his doc. My doc, the clinical trial one, is very cautious, and I was surprised when he put me back on this drug.

The Soma didn't work and I asked if I could go back on the Sinemet. He took me off it to begin with when I started the trial. He's not a fan of it, but I told him that it worked for me...he says that he listens to his patients and he did. Asked me what dosage I was on before and that's was he rx'd me.
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