Our Dr. wants to put Bob on this Drug...but the side effects worry me and my husbands movements don't seem bad enough yet...they say Bob is in the second stage...but already has trouble with his throat..feels like he is being choked all the time...wondering if this drug might help that??? Nila

Yes, I would also like to know how other's are doing on this drug?
My phd is on Risperdol and recently had his dosage up'ed from 1/2 mg- 2x day to 1mg-2x day and this increase has not helped his chorea. The side effect is that it dulls his personality and he doesn't have emotional problems at this point so he doesn't take it for that reason. I also was concerned about the emotional side effects of the Xenazine.



Edited 1 time(s). Last edit at 12/23/2008 01:41PM by LizzieAnn.

My husband has been on Xenazine (Tetrabenazine) for at least 5 years. It has greatly improved his quality of life. He also takes Paxil for anxiety. He was on Risperdol when he was first diagnosed with HD but it made him zombie like. Xenazine may not be for everybody but at least it is an option that wasn't available before now.

My daughter has been on Tetrabenzine for 2 months and sorry to say, we can see no improvement.

Is she having any of the side effects??

Hi Debra...Thanks for responding...so it sounds like its been good for your husband...no side effects??? i just feel like his movements are not bad enough yet...but they do seem to be increasing overnight..were he's twiching alot in the night...he's also on Amantadine for movement but i feel like this has increased his movements but has helped him with feeling so overwhelmed all the time

Hi Nila,
Before taking Tetrabenazine my husband fell down 2 times and had stitches,this happened in the house. It has helped his chorea. He was in the study that helped get tetrabenazine approved. While on the study he had to go through a wash out period where he was off the medication. During that time he was off the medication you could see how the chorea really was. His illness has progressed where his chorea is more noticeable, while he is on tetrabenazine. I imagine if he was off of tetrabenazne his chorea would be much worse. He takes 25mg in the morning 12.5 mg in the afternoon and 12.5 mg at night.He used to take 25mg in the morning 12.5 mg and 25 mg at night. The old dosage was sedating him during the day.



Edited 2 time(s). Last edit at 12/23/2008 11:40PM by Debra.