Sinemet every other day?

Geetar,One day off sinemet,and I'd be a basket case.You mentioned that your Dr. took you off sinemet.Did he replace it with another med?Did you discuss with him about taking it every other day?Seems to me like it would be like smoking only every other day.about the time your body starts to adjust to nosinemet you reintroduce it.Dangerous.Wish you the best.ED

Ed, do you really think it is dangerous? My thinking was if you can go from no pills to 1 a day, then 1 every otner da would be okay. I iwll ask my doctor.

If you don't mind me asking, in what way do you think it would make you a basketcase? I feel off on the off days, as well as on the one days after it wears off but it allows me to excercise.

Thanks for the thoughtful reply Ed. I went back to 1 Sinemet per day until I see my doc in 2 more days. I guess I am really worried about the long-term side effects of Sinemet and that got me wanting to take as little as possible. I am 49 and have a very active life and serious career and want that to last as long as possible.  But you are right that I should not experiment without the doc's direction. I did try the 1/2 Sinemet and it was not enough to handle my dystonia problem.

I plan to see about Requip which I tried before and made me queasy and tired but I want to give it another shot. Of course if it doesn't help the dystonia I may have to choose between going back to Sinemet or giving up the level of excercise I have been doing and enjoying.

Anyway, for anyone interested, I'll report back. Thanks again.

 

 

 

    I was diag 1 yr ago today. I am just now accepting it. I was in great denial. I am now taking 3 tabs per day but sometimes feel i need more Sinemet.

I haven't told many people, only family. Why is that? I feel I am still who I was before but slower and a bit wobbly at times.

  Going on my 4th Carribean Cruise -  I take many creative photos, I nap, swim a bit but don't eat with other diners for dinner as I have not perfected left handed eating yet. Finger food is best for me at this point....................

  Tremor is strong with stress. Books are a nuisance trying to read at nite. One glass of wine with dinner.

   I guess it's best not knowing what is in my future. It,s not brain cancer. Micheal Douglass is starting to look gaunt. I wish him well.

 

   That,s my story and I,m sticking to it!

  

Geetar,

I was struck by the posting of your symptoms -- as I have had the mirror onset of issues starting in Oct 2010. Only on my right side, started with toe curling only during walking/running aerobic exercise and progressed to lack of right arm swing. Over the last few months it has progressed to almost constant stiffness/lock-up of my right arm, occasional tingling/numbness, regular tremors in my right arm, and all the same in my right foot as well. The symptoms are much worse and exaggerated when I try to exercise, but present all day. I have not been officially diagnosed yet as to the problem. I've had MRIs, Nerve Conduction Study, Evoked Response Tests, round of Anti-inflammatories, round of steriods, array of blood tests, 24-hr copper urine test, Spinal Tap, etc -- all results negative/clean. I am scheduled to have a SPECT next week. One neurologist had me try one Sinemet 25/100 pill, but said she did not notice significant change in my cogwheeling or rigidity. They have run another blood test to send to IGenex to re-test for Lyme. I am scheduled to see a Movement Disorder Specialist to confirm whether or not it is Parkinson's.

As you are first person I have read with the exact symptoms, I was wondering if you could provide me with some more information on how they arrived at your diagnosis?

Many thanks,

ABJ

Geetar said...
Has anyone here who has milder symptoms tried taking Sinemet as needed instead of on a set regime?


I was taking Sinemet 25/100 3xs a day but did not feel like it was helping enough to justify the long-term side effects I have read about, especially ssince I am only 49.



Dystonia (basically toe-cramping) in my right foot during excercise was the presenting symptom pf PD for me (along with a lack of right arm swing which was a clue that something was wrong but was not really a problem). Siniment clears the Dystonia right up but the Dystonia is only a real problem when I do running aerboic excercise which I do every other das (and I do non-aerboics on opposite days). So I talked to my dr. and got off Sinemet but I could not aerboic excercise w/o the toe curling so I started taking 1 Sinemet before my aerobic excercise which means I take 3-4 a week, every other day.



I have noticed being slow and hand not working as well on days I don't take Sinemet but I can handle that. But I have looked everywhere and found nothing abou whether this dosage is okay. I have gotten what appear to be stomach bugs (diahrea, low-grade fever) a couple of times since I started this lower dosage but not sure that's even related.



So has anyone else had experence with this type of dosing of Sinemet???

Geetar, I went to a Guest speaker, a Dr. out of Vancover BC, who spoke of problems with delaying medication. He's out of a PD clinic up there so you may search it. If you can't find him let me know and I'll contact our local PD support group to get his name. Do you have a local support group? I don't attend meetings, but they bring in Guest speakers from all over the world. Here in Oregon the group is very active. You could go to OHSU parkinson center via internet websight for contact info. I do have side effects from both sinemet and Ropinerol. It's mainly staying up most of the night. As you might guess from my posting time. The main symptoms that I struggle with are similar to having ADHD. Difficulty getting to sleep, some impulse control, urge to buy things and difficulty staying focused/ or the opposite locking into something and forgetting about everything else. The impulsive part is well know for Ropinrole. Please ignore the spelling, I'm to tired to want to check it. Hope this helps, the side effects aren't as bad as the PD.