Sinemet anyone?
 

Jim's doctor is thinking of prescribing Sinemet at night to see if it helps Jim's muscle tightness. Anyone here take it? How much do you take and does it work well for you?

He's currently taking baclofen and tizanidine. Mornings are the worse for him. His legs are so tight I am afraid to even try to pry them apart for fear of breaking his knees. :eek:

By mid evening they are a little more loose and I can massage them to loosen up more.

MODS, if you think this should be in the meds section please go ahead and move it. I forgot about that section. Sorry.

Sandy

I've been taking Sinemet for about 3 years and I love it!!!! It's the only med that has helped me! When I started this clinical trial the doc took me off it and put me on Soma which was a huge mistake. I am now back on Sinemet and am much happier!

I highly recommend it!!!

Thank you Cheryl! Do you take it only at night like his doctor wants to try or more often? I am also curious if baclofen and tizanidine will be cancelled.

I tried baclofen and tizandine, they did not work for me at all. That's why I am on Sinemet. There are two forms. Sinemet and Sinemet CR.

SINEMET 25-100, containing 25 mg of carbidopa and 100 mg of levodopa, 2 tablets at night is what I am currently taking.

Sinemet CR: http://www.rxlist.com/cgi/generic/sinemet_cr_ids.htm

I tried to the CR and didn't get the relief as well as the non-CR.

I didn't take it with the other drugs, obviously. I do take it with klonopin, 1 mg. only at night.

I have virtually no side effects from this drug. The only one I have is stomach upset, but most meds upset my stomach. The doc increased the levodopa (lodosyn) by 25 mg to try to counteract that, but we have discountinued that as it really didn't help.

I started with 1 25/100 tablet for 1 week then went to 2 tablets. Jim might need to take the stronger one. 25/250, but his doc will know which one is best for him. It's worth a try.

Thanks Cheryl! I am going to print this out for the doctor. :hug:

Spasticity
 

Isn't Sinemet a Parkinson drug? I guess that would make sense. My father had Parkinson and his muscles were very rigid. I believe he took Sinemet.

I'm going to ask my doc about it cuz Baclofen doesn't do diddly for me either.

Yes it is used for Parkinson's patients. But as we've found out, not all meds work for everyone! If you have a doc who thinks outside the box, docs have to treat symptoms...not just the disease!!! :eek: Good luck!

Amen sister! I said that very thing to Jim's doctor Monday. I told him he cannot treat Jim like a cookie vutter patient. Just because it's a ms drug doesn't mean it works for all. He agreed. As a matter fo fact we had several disagreements but we have a good relationship so it works out. ;)

The doctor put Jim on Sinemet 10/100 once at night. So far we are on day three with no results so he has up'd it to two at night to see if that works. If by Friday we don't have any relief he's going to look into prescription Naproxen.

Give it more than a week! At least two on the two pills. :hug:

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...

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

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)?

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.

Sandy

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...

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.

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.

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

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.

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.

I think Jim's doctor is so cautious because Jim takes quite a few meds already. One of them being Methadone so they don't want him drugged up or have an interaction and neither does Jim. I do think once the Sinemet starts doing it's job, we'll be weening off the Baclofen or another med.

He did say that taking the two 10/100 are very close to taking the next level up so that could be why as well. Plus, he said this drug has to be up'd slowly. From what I understood, once Jim is at the level that works they will adjust the dosage so he isn't taking so many pills. They did the same with Methadone. Jim had an overdose with Methadone at first because the dose was too high, too early. The dose he takes now is the same he took when he overdosed. The only problem was they up'd it too fast. I think he's just sensitive to meds and they have to be careful.

Gee, someone else who is med sensitive!! Do tell :rolleyes:

I hope it works for him.

Sandy has the increased dosage taken effect yet or still too soon to tell? Jim and Sandy:hug:

It's too soon to tell but he is less tight. The only problem is he's sleepy. Hopefully he just has to get used to the med.

I don't remember the Sinemet making me sleepy, just upsetting my stomach. I know the baclofen and tizanidine do, so maybe all of them together have that effect :confused:

I think your right Cheryl and Jim's doctor is adamant about staying on Baclofen. Jim and I decided once the Sinemet starts doing it's job fully we will start to ween off Baclofen first. We know it's not working because he up'd the dose to four times a day and nothing happened. Once Sinemet started Jim noticed a difference. I am also considering the Baclofen may be hindering the Sinemet from fully working. Anyway, we already cut out the 4th dose and already see a difference.

We are not telling the doctor just yet. We want to see if weening helps and if Jim can handle it. Then we'll tell the doctor. We don't want to hear "I told you so." We want to say to him "We told YOU so." :D