Huntington Disease Lighthouse Families

For HD families ... by HD families


Posted by Shar 
January 30, 2013 08:53PM
I know we have had posts on tetrabenazine in the past. I was just wondering to date who has tried it and what were the results for you-
also were there any side effects that caused you to stop taking this medication.
I very much appreciate your opinions and they will help me with our decision.
Thank you.
Re: Tetrabenazine
January 31, 2013 07:00AM
My daughter has been taking it for 3 1/2 years with no side effects. It is very effective in stopping her chorea.
Re: Tetrabenazine
January 31, 2013 01:44PM
I was curioous about this too. I don't need it yet but can you function normal with it or is it for when you are further? Does it control chorea?
Re: Tetrabenazine
January 31, 2013 03:37PM
What do you consider "functioning normal"? I'm not sure that anyone with HD actually functions normally. As I stated, my daughter has been taking tetrabenazine since July 2009. She has virtually no chorea, has had HD for about 14 years, and did previously have moderate chorea. In her case, yes, I would asume it is controlling her chorea. She does need assistance with walking, has trouble swallowing, but is still quite mentally alert. I know that many people are quite down on tetrabenazine. I would assume that as with all medications some people are helped and some are not. The only way to answer the question as to whether this drug would be helpful would be to try it and see. It is not easy to get. Your doctor cannot simply write a script. The doctor must submit paperwork and wait for an answer. The drug does not come from your local pharmacy. It is fedexed to the patient every month from Accredo Pharmacy in Tennessee. I am not sure if this is the only distributor. Also, the drug is very expensive! My daughters is billed out at about $6500 (that's six thousand five hundred dollars) per month. I can not fathom how anyone with a percentage copay could afford this.

Edited 3 time(s). Last edit at 01/31/2013 05:18PM by howard.
Re: Tetrabenazine
January 31, 2013 08:28PM
My dad also is on xenazine. He had moderate to almost severe chorea. It has helped with movements greatly, but now after about a year and a half on it, his HD has progressed a lot...I really don't think it is the xenazine because he's on the lowest dose, I think it's just part of disease progression, he is more stiff-like, incontinent, difficulty swallowing, falls often, becoming wc bound. I'm not sure what stage this is, but I do believe it's end or very near end. It's is so sad to see how fast he has progressed. Just 10 months ago he was living alone and walking with occ falls. It is costly but I had no problem getting the med for my dad. Went to site and called the number and applied for a med grant and within two days they called me and said he was approved. Never have been charged.
Re: Tetrabenazine
February 01, 2013 06:34AM
Linda has been on Xenazine since 04/09 with no noticeable side effects. Was able the observe the benefits over the holidays when the Rx expired over the holidays leaving her a couple of days without the med until everything got back on schedule. Chorea ramped up within 24 hours and subsided again when she began using.

Cost in the U.S. is definitely a question that should be addressed , especially when it is a drug that has been used for over 20 years in Europe.

Fred Lothrop
Re: Tetrabenazine
February 01, 2013 09:56AM
I realize that hd is hd, but it is good to hear that this does help. It is amazing how much this drug costs.
Re: Tetrabenazine
February 01, 2013 11:31PM
My husband has been taking xenazine 12.5 for a year and half and let me tell you it has been great he was so tired all the time because even while sleeping the movement were bad, a lot of our friends tell me how mellow he looks and the movements are gone, he had them on his stomage too and he could not hold food for a long time because after he ate he would go to the bathroom and had diarria he lost a lot of weight but a few months after he start taking this medicine he has been really good and thank God no side effects.
Re: Tetrabenazine
February 09, 2013 09:36AM
just starting my Husband on xenazine. He was tried on Haldol and had a very severe reaction with severe akesthesia (extreme restlessness, constant movements that were not the chorea) and landed in the hospital for 2 days. He was able to get into the rehab unit for a week of PT/OT after this so in a way it was good. He has just finished the first week of 12.5 daily and I really see absolutely no difference so far. Yesterday was the first day of twice a day dosing. I am interested in what dose most people are using with sucess and how long the effect lasts.

The medicine is ridiculously espensive. My insurance has a 40% copay but luckily the copays are capped at $2,000 a year. (pay one month and the rest of the year is covered).
Re: Tetrabenazine
February 10, 2013 08:53PM
My husband's Xenazine over the last 2 years has increased to 100mg per day. We use 25 mg pills, and give 1 1/2 at 8 am and noon, then 1 at 4pm. He was having very uncomfortable chorea of the diaphragm resulting in constant burping and hiccups...very troubling. Thank goodness that has not reared its ugly head in over a year. His chorea is pretty rough first thing in the morning, but subside fairly well with his morning dose (which also includes a 3mg Risperidone) Hehad some periods of increased sleeping each time he would have a dose change, but has been steady for a while. He sleeps from 11p to 9 or so in the morning, and does not nap during the day. He's reporting some nights of insomnia. No depression or suicidal ideation either. We are pleased with his treatment on Xenazine. Thankfully, his medication is paid for by insurance plus charity coverage of the copay.
Re: Tetrabenazine
February 12, 2013 08:00PM
Thanks to all of you who voiced your experiences and opinions. I appreciated all your replies very much.
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