My 47-year old daughter (CAG 42) is exhibiting signs of chorea in the hands. What's the latest on treating chorea? I will check for interactions with her ?bipolar? meds. Thanks.

Unfortunately, if you're trying to get rid of the chorea all together I'm afraid you'll have a tough time doing that. My phd hubby has moderate chorea and he has been on Risperdal. He has been on a pretty low dose of 1mg 2 x day (2mg/day). It tends to lose it's effectiveness fairly quickly and the dose needs to be increased.(something we're attempting at this point to see if the increase will even help). I'm afraid sedating him further may be our only option, but an unfortunate one.

We are considering the Tetrabenizine as it is the latest for help in controlling the chorea. They say you should take an anti-depressant with it as it can cause or exaggerate depression. Something that hasn't been a problem for my phd up till now and I hate to put him on a medication to control chorea but cause depression.

My advise in early mild chorea is it will probably increase for most that develope it and you probably won't ever be able to get rid of it completely.

I'll try and keep posted on here as to our trial and error on the meds we're adjusting to try and get a better quality of life during this time with increased chorea.

I would also appreciate hearing from anyone else on how any meds helped their phd. And from anyone that used Tetrabenizine.

My daughter has been on tetrabenazine since July 2009 and it has stopped her chorea completely. She takes 12.5 mg three times a day. More importantly it has stopped issues she had with choking which her neurologist says was caused by abdominal chorea. She can now enjoy her favorite activity which is eating out. She was already on depression meds.

Howard,
I am glad to hear that Tetrabrnazine has been so helpful for your daughter and improved her quality of life.

Thank you for your responses.

Howard,
Thank you for posting that info on your daughter's success on Tetrabenazine. I was surprised to hear you say it stopped all of her chorea. That's more than I would have expected from this drug.

This news you've shared with your daughter's success makes me consider this drug even more at this time.

We have been hesitant to try it due to warnings of despression.

Howard, did your daughter previously have any problems with her temper? And how or has the Tetrabenizine or any other medication she has taken effected this? My husband is on Risperdal and I am thrilled to share that ever since he started on a very low dose of this he never had another temper-tantrum again and is so cooperative on this medication. Let me add, that he really never was a difficult person and he would just blow a fuse sometimes when outside pressures were too much. Not even one episode of this while on Risperdal, but it no longer controls any of his chorea and Yes, the choking is a concern. My phd is also now exhibiting signs of anxiety, constantly rubbing hands together and rubbing his arms....just rubbing skin with his hands and when I ask him why he's doing it he says "he's bored". I suppose that could be? At this point I don't have any other ideas?????

All of this warrants a look at a medication change that has become evident. We're just not sure in which direction to turn?



Edited 1 time(s). Last edit at 03/22/2010 07:23AM by LizzieAnn.

LizzieAnn- To say that she had a problem with temper is putting it mildly. If you can dig up some of my posts from 2005/2006 you would be amazed. At one point we had 13 police interventions/hospitalizations in 15 months. She was put on depakote/seroquel to help this. She's also on lexapro. Things were so bad that I sold my house in Georgia and moved to NY so that she could live at Laurel Lake. The temper problems have subsided over the last few years. If anything, the tetrabenazine has made her more tranquil and has not caused any depression. Because she is in a clinical trial, we see her neurologist at Mass General every month, so she is very closely monitored. She went off the tetrabenazine for five days in January as a test and the results were dramatic. She couldn't even eat due to the chorea. It stopped as soon as she went back on it.