Carbilev ( Sinemet ) advice please

[Celtis]

When I was first diagnosed I was told to take 3 x 25/100 Carbilev a day. At that time my only problems were tremor in my right hand, no arm swing unless I thought about it and a tendency to fall because I was dragging my feet.

I put off taking it for about 9 months and when I did I got very uncomfortable involuntary leg jerks. Is that dyskinesia ? Is it caused by the carbilev?

I decided to halve the dose.I was taking half a tablet every 8 or so hours, night as well. And the jerking seemed to calm down. I now take half a tablet every 6 hours.

My problem is that, as I get towards the end of the 6 hours I start jerking again, to the point that it will wake me up.

Now what I don't know is this: If it is carbilev causing this, should I stop it altogether? It makes very little difference to me, I couldn't say if I was having on or off time after I take it.

Or is this pd? Do I need to take more carbilev? I would be grateful for any advice.

( And, just to add, because we all watch the B1 posts so intensely, I am in my second month of that and today my handwriting is much improved. It could also be mannitol however, which I started 2 days ago.)

[Bailey_Texas]

Good morning Celtis

You are correct about carbilev it will cause restless and the solution for me is

3 2mg Ropinrole 1 in the morning noon and night.

[Celtis in reply to Bailey_Texas]

Thank you Bailey. I will request that when I see a neuro.

[Despe]

Celtis, your improved handwriting is the result of your B1 therapy, not Mannitol as you have only used it for 2 days.

My husband has been on B1 injections therapy for a month, and his handwriting is back to normal, no micrographia anymore.

[Celtis in reply to Despe]

Yes, I think you are right, and I feel much more energy than I have for years. Things look up! Thank you for your response.

[akgirlsrock]

My Neuro told me to much will give you Dsykanisia, my sinement is 25/100. Nurse said try one pill and then one half, I did, but 2 pills every 4 hours works for me to keep my tremor and my walking good. I do get slight Dsykanisia, and later in evening my left foot gets really jerky for awhile.

[Celtis in reply to akgirlsrock]

I was getting dyskinesia from 4 half tablets (25/100) in 24 hours. I have cut back to half a tablet every 8 hours and so far it seems to be better. But I begin to wonder whether I need c/l at all. I certainly don't notice any 'on' or 'off' time. Nothing seems to change much with it.

I am not far in and I realise, reading this forum, how lucky I am. The dyskinesia is actually my worst problem at the moment. I think if I had to take as much as you are taking it would be unbearable.

It could also be that thiamine is making me need less c/l. Not sure about that.

[Cerian in reply to akgirlsrock]

Hi I found that 1 sinamet every 2 hrs and a 50/200 slow release at night.

Look at the half life of sinamet. Cerian. Ps the ropinerol caused periferal odema so I did as you do split it to two doses, solved that. Cerian