Can you tell us what your dosage is?

MY MDS was not familiar with zonisamide in PD. She is unwilling to prescribe it as it is too far off label. I sent her links to the information so maybe she will change her mind.

My primary care physician has prescribed zonisamide for me. He didn't have a problem with prescribing it. I am excited about taking it and will start with 25mg. Once a day for a week then twice a day. Will ramp up dosage if needed. This drug seems to work for PD at low doses. Range between 25-150mg.

My wife was on Zonisamide for about 3 years. Her MDS discontinued it a few months ago because we thought it wasn't doing much good. The MDS put her on Rytary which seems to prolong her on times but she still needs about 3 fast relief Sinemet each day. She is well over the equivalent of 1200mg CLD.
She was on low dose naltrexone, LDN, for about 6 years (started 11 years ago) and it did not seem to help. Her PD has advanced to where she has serious hallucinations and delusions. She just started Nuplazid for PD psychosis. She is not a candidate for DBS because of psychosis.

You probably know that Nuplazid is a new drug and horribly expensive. We have been offered this drug but have held off due to cost and the really mixed reviews we've read. If something costs over 2K a month, it better work wonders for more than a few PWP!

Please let us know how this drug works for your wife. Have you tried other anti-psychotics such as Seroquel, etc., and if so , how did they work?

My wife has been on Nuplazid for about 4 weeks now. She still has the hallucinations and delusions but she may be more calm and reasonable. The drug is Very Expensive, I pay $40 copay for 30 day Rx. It take about 6 weeks to show its effectiveness but nothing dramatic so far.
My wife is/has been on Seroquel, Geodone, Mirtazapine and has had 16! ECT treatments (this summer). Nothing has helped much with the psychosis (many ER visits). If the Nuplazid does not work I think they'll try Clozapine and if that doesn't work it's a nursing home?

Thanks for responding! We were told the Nuplazid would take about 2 weeks to work, 6 is a lot longer but could be worth it. I hope it helps your wife and you both get a break from PD.

I went to a new doctor who is a regular neuro. She was also unfamiliar with its use in PD and as usual not very interested in learning more much less prescribing it.

I can only speak from my wife's experience with Z. She was put on Z a number of years ago by a very competent neuro. I believe the reason was to help with my wife's dyskinesia brought on by the over 1000mg of c-ldopa she was taking. It may have helped or not.
A few months ago her doc took her off Z with no apparent effect. It may be because my wife no longer has bothersome dysk.
Her major problem, for a few years now, is pyschosis. She has been on the "miracle" Nuplazid drug for 8 weeks now and is worse than when she was on Geodon. I think we are going to DC Nuplazid soon.

If I had PD, I would be taking 2 to 4 g of Curcumen daily.

Can you update us on how this is working for you?

Much appreciated.
Kevin