Starting a trial of Simenet

So I am due to start taking Simenet as a 30 day trial for Dopa Responsive Dystonia and although that specifically Parkinsons related you guys are probably the experts on this medication.

All I know is that I am meant to take 3 x tablets a day and the dosage is 65mg (I’m guessing per tablet) I should then go back and see my consultant to see if it’s worked. However it turns out the neurologist I saw privately has retired and I am now on a 26 week waiting list for a new one!!

I have no further instructions on what to do, when to take it, if it interferes with other things etc so was after some advice.

Firstly is 195g a really small dose, apparently this is just meant to be a theraputic level to be begin with.
Should I start taking all 3 at once or should I build up to it gradually?
What times of day should I take it, I read somewhere you should take it 1 hour before a meal because if you take it with a meal it doesn’t absorb as quick because it’s in competition with the other proteins in your stomach, is that right?
What side affects do I need to look out for?
What happens on day 31 when I stop taking them will I get bad side affects/withdrawal symptoms?

I have been taking dopa mucana for a couple of months now without any affects and had really good results so I don’t think there will be any issues. At one point I was taking 180mg L-Dopa a day in one tablet and I was high as a kite for a week before reducing it to a 50g tablet bu that seems to wear off in the afternoon and I get really fatigued, so 3 tablets might actually be to much so I was thinking of just starting with 2 for the first week.
My energy levels really drop around 11.30 am and then 5pm when I get in from work so was thinking of taking them then and before I eat lunch & tea. I’m always ok first thing in the morning and I’m worried if I take a bed time one I wont be able to sleep.

Thanks for any advice, I’m sure I will have more questions.

Hi @Phil82,

This is a subject that has been popular on the forum so I’m sure a few of our members will chime in with their advice. It’s really unfortunate that you have to wait 26 weeks to see a new neurologist, I know this must be really unsettling to you. We have some top tips on managing your medication which you can find on our website here:

I’d also recommend that you chat to one of our advisers via our helpline team, they can arrange for a Parkinson’s nurse to call you back within 24 hours and can offer you more information on how best to manage your medication. Give us a call on 0808 800 0303 or email us at [email protected] as soon as you can.

Best wishes,

Thanks that’s great, does it matter that I don’t have full Parkinsons, would a nurse still give me a call back?

Hi @Phil82,

Your’re welcome and yes, the Parkinson’s nurse s available t anyone affected by Parkinson’s.:slightly_smiling_face:

Best wishes,

Hi. I was diagnosed with DRD afew years ago though medication didn’t completely work and I have progressed giving my diagnosis a question mark. Getting the dose right is tricky and hope the PD nurse helps :slightly_smiling_face: