WEANING OFF STALEVO

[Mcraeh]

Hi - I'm new here- diagnosed in 2006 and have been on Stalevo since 2006. Dr is trying to wean me off Stalevo. - I'm on day 4 and have become extremely weak - and also experiencing a burning ache in both legs. Has anyone else experienced similar. effects?

Thanks!k

[Bailey_Texas]

First why are you stopping Stalevo are you having bad side effects and if you are what side effects are you having. I have not taken Stalevo but have taken the same combination of meds (Carbidopa, Levodopa and Entacapone). Sounds like you are just feeling your Parkinson's symptoms which the Stalevo was masking which is it's job. Are you taking any meds to replace Stalevo. Hope i have helped answer your Question.

[covey534 in reply to Bailey_Texas]

My neuro (at the time) liked Stalevo but it has been the only med that caused me bad side effects. I switched to Sinemet only & improved, then with a better Dr. later added ropinarole (Requip) & amantidine (sp). I go along with the belief that the Sinemet (considered "gold standard") gives the most important and basic relief. Results may vary. My opinion/experience is worth every penny you paid for it.

[Bailey_Texas in reply to covey534]

I can not take Entacapone or any extended release Carbidopa, Levodopa even Rytary i can not use. Carbidopa, Levodopa alone i do well on with 24 hour release Requip

[MCRAEBHL in reply to Bailey_Texas]

Hi - Had an abnormal EEG and EEG w/sleep deprivation (had some memory loss. Nothing conclusive - neurologist ordered Levadopa Testing - off Stalevo from 8:00 pm until 8:00 am the next day - I was in great shape - walking was great, tremors were under control, passed all the normal tests that are done at routine office visit. Around 9:00 I took a Stalevo and my voice became softer and hoarse, my walking was very unsteady - Dr stated that looks like Stalevo was causing these symptoms and they would try to wean me off Stalevo - schedule 8,12,4,8 - after second day of this schedule all my symptoms reappeared - once again can barely walk. Now he wants to add that dose back and wants to go to a Stalevo 150 - doesn't make sense to add a higher dose of stalevo after he said that Stalevo was bringing g on these symptoms.. doctors response - very interesting... he also stated that it's possible I never had PD at all. DatScan scheduled next week - hopes to get a clue from this test as to what I really have. Sorry for the long comment - felt good to be able to talk about it..

Thanks,

Helen

[Bailey_Texas in reply to MCRAEBHL]

Not taking Stalevo for 12 hours will not get out of your system. It takes several days to get it out. When you took that dose it most likely not the med you just took but just the result of being off your meds al day. I have stopped taking my meds and had no symptoms until the next day. I may be the Entacapone causing some of your problems. it should take a week to get you off Stalevo. Good luck

[MCRAEBHL in reply to Bailey_Texas]

Sorry it took me so long...no replacement drugs yet - talked about going to a higher dosage of Stalevo, don't think that will help

Side effects I am experiencing are ankle turning sideways and downward - freezes in that position anywhere from 5 min to 45 minutes. Along with that my big toe curls downward. Also pain and weakness in legs

[Bailey_Texas in reply to MCRAEBHL]

Those are not side effects, that i think is pd. Try carbidopa levodopa only (Senimate) for me it works better. Requip works for leg pain for me.

Good luck

[MCRAEBHL in reply to Bailey_Texas]

Thanks! Will keep trying...had a setback recently - had some neck pain when I got out of bed - I think it was just from sleeping in a new position. Saw the doctor that same day and they said it might be cervical dystonia and sent me to a specialist for Botox injections in my neck. Symptoms are worse than they were - neck and shoulder pain is severe, dizzy spells (never had those before), unsteady...doing a Dat Scan next Friday - according to dr this test will tell whether or not I have PD - he said it's looking like I never had the disease but they don't know what it is..

Right now I'm taking Stalevo 125 5x per day, Trihexyphen (Artane) 3x per day, Flexeril every 12 hours and lots of Advils -- any thoughts?

Thanks!!