Sinemet best practice - take a tablet when you feel you need it or stick to 3 times a day and be uncomfortable.

[Yogibear]

I cannot stick to 1 tablet of Sinemet, 62.5mg 3 times a day as directed by my PD Nurse as I definitely need one every 4 hours or I wear off and have very uncomfortable, painful restless leg syndrome. I have started taking 5 a day and then add in Sinemet CR 25mg Levodopa at night to try and get some sleep. If RLS kicks in it can take up to 2 hours + to get back on track! Am I heading for problems in the future by doing this? I can't stick the discomfort it gets me down.

[honeycombe3]

Hi Yogi, I started taking Sinemet a few months ago after giving up Disipal (Orphadrine) which controlled the tremor & pain but had some adverse side-effects. My experience is that the tremor, stiffness, clawing & pain haven't been touched by Sinemet so I'm reintroducng Disipal but at one third previous

dose & in the interim stopped Sinemet to see what might happen. I too have restless leg but I have learnt self-hypnosis & visualisation techniques which have helped. I keep a record of my condition, treatments, changes in meds etc on PatientsLikeMe (Google) & I keep a diary.

[joss in reply to honeycombe3]

Hi honeycomb,

Just tried google for the diary they have deleted it if u have info in it

they said u can use until 1/1/13.

Do u no if there is any thing else like this

[Sandra65]

hi yogi i take sinemet plus i take 4 a day as and when i need them that works best for me x

[rch21]

I take 1 1/2 tablets of Sinemet 25/100 5x per day plus 2 tabs of Sinemet CR 50/200 Sinemet at night. This helps avoid the symptoms as it starts to wear off. I also take .25mg of Mirapex 3x per day which helps tremendously with the RLS. Good luck.

[Court]

This is a difficult one to answer. I take Stalevo, but do not have medical experience so can only tell you what I do and hope I won't get into any trouble.

My meds do not always last the 5 hours they are supposed to so I tend to take one early, though not more than an hour early, rather than cope with my tremor etc. Also, if I am going out anywhere I readjust the timings to fit in. The other thing I have done, and have told my nurse that I wanted to do this, is take an extra tablet during the night.

If you have access to a Parkinsons Nurse, perhaps you should contact her. I think they are more approachable and knowledgable that Doctors.

[Yogibear]

thanks everyone I will speak to my nurse. I feel more comfortable with what I am doing.

[Pelley]

That's the "fun" of PD! I was told over a decade ago that I was to be "my own neurologist". I've been the riquip route. Sinemet, Compton, Mirapex, Amantedine...... After almost a decade and finding no need drug recipe that worked consistently I was chosen by the DBS team at Mayo Rochester.

What a wonderful thing!!!!!

At my worst I was taking a combination of 36 pills daily. Now I'm managing with 12 and just Sinemet!

The best thing I was ever told was that I'm the only one that knows directly the effects of dosages and times. Therefor ......with in reason....... You're your own Neuro!

[shasha]

True genius resides in the capacity for evaluation of uncertain, hazardous, and conflicting information."- Winston Churchill

a bit like us with conflicting advice from neuros etc !!

[PatV]

Yup me too. 100 mg sinemet 4 times a day WITH FOOD plus I add half a sinemet as needed usually p.m. plus bedtime. I have to wait an HOUR in the a.m. because I'm on levoxyl (thyroid cancer in 2001 -- had to have thyroidectomy). I'm never changing meds again!!!!

[PatV in reply to PatV]

p.s. my neuro told me early on it's better to be a little undermedicated. I thought the implication was that "trouble down the road" would be result of OVER medication.

[ETPDRobbed]

Yogi,

I hope ypu are under the care of a Board Certified Movement Disorder Neurologist and not just a "PD Nurse". Over the last 10 years, PD has become even more complex both in various symptoms and treatments. The term Parkinsonism is now being used to reflect that the disease covers a wide range of symptoms, treatments and medication that is very much a different mix for each patient and it is very dynamic! You need to have a doctor in your corner who is keeping up on what is going on and can provide you with the latest thinking. I was diagnosed 10 years ago with PD by a Neurologist and treated accordingly. Recently, I began seeing a Neurologist specializing in Movement Disorder. After several months of evaluating my symptoms, and meds, she suggested thaat my primary problem is ET (Essential Tremor). My drug mix was gradually changed and the amount of Sinemet reduced. I feel better now than I have in years.

[Owenbob]

I've been taking sinemet for a long time. Ended up with 2 in the morning and two at night. But I don't see that it does any good. Feel no effect. I think DR will have me stop taking it.

[par004]

Dx'd 13 years ago. Been on Sinemet for over 2 years (Mirapex before). Dose is 1.5 x 25/100 tabs/day. Plus COMTAN which stretches Sinemet from 4 hours down to 3 hours. Sinamet working fine. Mirapex was the worst in terms of side effects.

Original neuro left a lot to be desired, got 2nd opinion from neuro at University who specializes in PD and movement disorders, he is now my PD guy. He knows his stuff