I am looking for feedback regarding Xenazine dosage. My mother has been taking this since November 9th. Her doctor increased the dosage over a couple weeks to 12.5 mg three times daily. At her one month follow-up, she was not experiencing and side effects and felt the medication was helping with her writing, but not much for her general movements and walking. The doctor agreed to increase the dosage to 25 mg three times a day. That was December 18th. He also discontinued Amantadine 100 mg three times daily that she had been on for several months because it had not appeared to help at all. Over the past week, I feel that her cognitive abilities have gotten worse. It may just be the natural progression, but I feel it may also have to do with the increased dosage and possibly stopping the Amantadine. Does anyone have any suggestions or experience with this possible side effect from Xenazine?

Thanks,

Jen

We tried the xenazine three times. Each time after a couple weeks my husband would have sleepless nights which can be a side
effect of this drug. One of the neurologists locally wanted him to stay on it and take additional klonopin to counteract. I am not
keen on taking more drugs especially one this strong (klonopin) to counteract as I could not see a lot of difference in him so we stopped.
That particular dr said he has a lot of luck with xenazine but we did not.

My daughter has been on 25mg xenazine twice a day since 2009. She has almost no movements and no known side effects. Her case may be different as she has JHD.

My husband had severe chorea for four months prior to finally getting xenazine. It has controlled his movements, and when it wears off they start again. The xenazine does make him very sleepy which leads to naps during the day and then he's up a lot during the night. Still working on his dosages, and his sleep pattern, but for the most part it has really allowed him some normalcy! Priot to starting it he had about 10 tissue tags removed from his rear (friction from movement) and sores on his legs from constant moving in his chair! He was also completely exhausted from sll the movements, so we are fans of the xenazine and we can work through the various side effects!
Vicky

Thank you for the feedback. I'm going to speak to her neurologist tomorrow about changing her dosage back to 12.5 mg 3 times daily and restarting the Amantadine. Hopefully her behavioral changes recently were just from the changes in dosages.

Thanks again

My husband on 12.5 once a day for 6weeks now, movement worse and agitated more we are going for follow up soon, was disappointed

It sounds like this is a medication, like many, which will work very well for some and not for others.
If your mother was on a lesser dosage of xenazine and also the amantadine and doing well I would opt to try those again as they were.
With this illness those around the one with the illness play a big part in what works and what will not - it is up to us to let the dr know and
let him/her know what we feel may work best and try it until we find something that does well.
Good luck

My wife takes a 12.5 mg Xenazine tablet twice a day. We tried three times a day, but it sedated her. Xenazine really controls her involuntary movements. We have several HD friends that have had different results. I doesn't work the same for everyone, but I'm so glad it is helping her. Good luck figuring out what helps your loved one.