Hi everyone!

I haven't been around in a while - been in "diagnosis limbo" and just have been trying to ignore my symptoms and not to think about Parkinson's Disease if at all possible!

Well, I went to see my MDS last week and she finally decided to try Sinemet. She believes that I have either Parkinson's or Dopa Responsive Dystonia. So the plan is to try Sinemet. If it works, then we KNOW it's one or then other. If you have Dopa Responsive Dystonia, Sinemet is the "cure" and you take it daily for the rest of your life. The test with Sinemet is to narrow it down to the 2 diseases, if Sinemet doesn't work, we know that I don't have either, but if it works we know I have one or the other.

I started the drug on Monday and within an hour I had a GREAT improvement on only 1/2 tab. I even took before and after video of the bradykenesia in my left had - pretty amazing. I am supposed to continue to titrate up the dose of the Sinemet until I'm taking 1 full pill three times a day - right now I'm at one full tab twice a day. When I go back to the doctor, she will take me off the Sinemet and try one of the angonists. If it's Dopa Responsive Dystonia, the agonist shouldn't work and that would narrow it down to Parkinson's. I really feel in my heart that it is Parkinson's as my symptoms are unilateral and Dopa Responsive Dystonia should be bilateral. Plus most cases of Dopa Responsive Dystonia begin in early childhood and it is VERY rare. We will see! The good part about Dopa Responsive Dystonia is that there is a cure - Dopamine!!

The question I have is related to the nausea I am experiencing with the Sinemet. I feel very sick for at least an hour after taking it. I've tried taking it with food which does help, but I was wondering if anyone here has any suggestions?

Thanks so much!

Lora

Hi Lora..Good to see you back on the campus!..

I had trouble with nausea with all the pd drugs Ive tried..Requip was the worst

What I had to do was titrate up very gradually..I started at 1/2 pill per day for a week..then 2 halves, then 3, then 1 whole, then 1 whole and 1 half, etc, etc, etc

For me the nausea completely left, and when I switched from 3 x 25/100 daily regular Sinemet, to 2 x 50/200 Sinemet CR daily, I was able to switch to what is the equivilent of a double dose of 25/100 without a titrade..I switched over in one day without any side effects

Lora, when I first started taking Sinemet nearly 12 years ago, I would get nauseaus and sometimes even sick to my stomach despite taking it with huge meals. The nausea is caused by levodopa entering your system too quickly - too much "hitting" all at once. (FYI-Levodopa is the form of dopamine that can cross the Blood/Brain barrier.) The solution for my nausea was another pill taken along with Sinemet called "Lodosyn." At the time when I was using Lodosyn, it was provided free of charge from my neurologist.

Sinemet is a combination of levodopa and carbidopa. The carbidopa acts as a buffer that helps the levodopa get to where it needs to go, but without it getting into your bloodstream too quickly. The numbers on the Sinemet, like 25/100, tell the proportion of Levodopa to Carbidopa in the pill you're taking.

Lodosyn is pure carbidopa. It provides additional buffering so that your body is not uptaking the levodopa quite as quickly. For some people, the proportion of levodopa to carbidopa in Sinemet is too strong so additional carbidopa is provided through Lodosyn.

After taking Sinemet for awhile, I got to where a couple of crackers eaten with each dose kept me feeling fine without using Lodosyn. 12 years later, I can swallow anything without any problem at all. Maybe Lodosyn would help you out too.

Disclaimer: Not a pharmacist or other medical professional - just a fellow PWP. Please understand I'm giving you info about how Sinemet and Lodosyn work based on recalling my own expereiences through a swiss cheese memory!

Donna

Lora, what is causing the nausea is dopamine produced in the peripheral circulation from the L-DOPA. This is caused by enzyme peripheral dopa decarboxylase. What carbidopa is supposed to do is inhibit this enzyme so that more of the DOPA gets to the brain where the brain dopa decarboxylase converts it to dopamine where it does you some good. A little more carbidopa in the form of Lodosyn, taken with Sinemet might help, but I think Steve's and Donna's advice about slower increases in Sinemit dosages and a little non-protein food when you take it are probably the best approaches.

We are all wishing you the best possible outcome in this adventure (which none of us intended to begin)!

Robert

Thank you to everyone for your responses. I'm on day 10 of the Sinemet and the nausea is starting to pass. I have slowed the titration and that seemed to help. I really appreciate the advice!

Lora

hi lora,

i hope you are doing well on the sinemet. i believe i read an old post of yours once that described a lot of dystonias with parkinsonism??? am i correct? i ask because i, too, am in "diagnosis limbo" and have a LOT of dystonias... my doc states i do not "look like" YOPD on physical exam but that i have so much parkinsonism he's not sure.... i have not tried sinemet yet but am on mirapex now about 6 months, which mostly helps with the mild tremor in my right arm and with my handwriting.... how are you doing on the sinemet? what does it help with? or is it too early to say? sorry if i am being too nosy--and i may have recalled your history wrong??

warmest regards,

xaxa

btw, i don't think a non-response to a DA agonist excludes the diagnosis of DRD....Vettey, are you out there??

xaxa

Hi there

We started Sinemet at about the same time. It is truly an amaziing drug in my opinion. My lifestyle has improved tremendously. What stands out is that I had been unable to feel toes for about three years and within one hour of taking sinemet,, i could feel those little wigglers.

I switchged over to a 50/200 SR tab about a month ago and am feeling great for the whole six hours of the SR life. Now I am back runniing on a daily basis and plan to hike the grand canyon next week.

I used to take Sinemet for my MS. I also had the horrible naseau associated with it. My doc increased the Lodosyn by 25mg and it helped tremendously. It was just enough to stabilize the side effect of the levidopa. I was taking it twice a day for spasticity and was on the 25/250 tabs with an additional 25 mg of Lodosyn twice a day.

I switched to Sinemet CR and the extra Lodosyn.