I had put a prior post on regarding "haldol". I am looking for something that could help my husbands movements, dropping things, etc.

Through the first post I realized people were using drugs other than xenadine for this same purpose which I wasn't aware of.

My questions regarding all three of these drugs (xenadine, abilify, amantadine) are:

(1) how beneficial have they been to you?
(2) what are the side effects you have encountered?
(3) are these side effects totally reversible after the drug is no longer taken?

I so much appreciate all your opinions, thoughts and anything else you would want to share. I don't know what I would do without this
website. Thanks again.
Shar

My Husband is on Amantadine for movement he has been on it for 4 years at 400mg he is doing great on it...no side effects and if he forgets it his movement increases a lot...as far as i know there are no long term effects like there is with haldo...Nila

Ray was first put on Abilify many years ago and was on that for years, probably about five, six years. He did good on it, but did start to get some parkinson's-type movements from it, that's why he started the Amantadine (to counter-act those movements). In conjunction, they helped for quite some time, until he had an adverse psychotic episode with the Amantadine. He then continued on with just the Abilify for a bit longer, but it's effectiveness was decreasing. He was starting to have more movements. I think a lot of it was just the progression of the disease. His neurologist then switched him to Zyprexa, which he used for probably another six or seven years, right up until about four months before he passed away . . . that's when they switched him to the Haldol, more because of psychiatric issues (OCD, dementia, emotional instability). For a very brief time, they did try the tetrabenazine also, but he already had a lot of swallowing issues and it made those issues worse, because he was so advanced in the disease process by then. His movements actually subsided quite a bit in the last couple years before he died.

The last three years before he died, he also took Zoloft (obviously not for the movements, but for depression). Just a side note, I never thought he was depressed before he started taking it. He went into the nursing home, though, and they thought he needed it, so I agreed they could try it. I actually wished he had started it earlier, because it did have a positive effect on him.

Anyway, I hope this helps.

Shar, my dad just got approved to take xenazine. The med is mail ordered and should arrive soon, I'm excited because it is very costly and didn't know if his insurance would pay, but they approved it!! His movements are really bad so I'm hoping to see improvements with that. There are side effects like depression with this drug, but feel it is worth a try. I wish you the best in your decision.

Shar, take a look at this posting and consider asking your doctor about it.

[www.hdlf.org]

Terry has only been on the Abilify for a couple of years and although he's doing well on it I have suspected that it's not going to last forever. I have also thought he might be needing an antidepressant. Mjdelcon-You've given me sort of a blueprint of what we might try in the future and possibly we might try the Zoloft soon. I'll also be looking for the development of the parkinson's type movements you've talked about. And thanks, Shar, for asking. I agree this website has been a godsend to me as well. This is where I learned about Abillify in the first place. Terry's neurologist had no experience with Huntington's and pretty much left it up to me to research medications so this is the first place I went. We're pretty much out in "no man's land" here when it comes to Huntington's. We have found a dr who has had experience with one Huntington's patient but unfortunately he's just not a great dr. either. We all love him as a person and he does listen but he's not up to snuff on medications. Without this website we'd really be in the dark.

Thank you all,
Audrey

If this is a double post, sorry. My last one seems to have disappeared into cyber space. My daughter has been on xenazine for 2 1/2 years. rj is right it is expensive ($4700/mo for Allison) and has to be procured from Accredo Pharmacy in Tenn. Allison often says that it is the only drug that has really helped her. She has almost no movements and her swallowing is much improved. Three years ago she could barely swallow. A test last week revealed that her swallowing is fine. I feel that people are scared away from xenazine because of the depression issue. Depression is an issue in HD, xenazine or not. Allison had very severe depression earlier in the disease, It is not an issue now. I remember how hard people worked to lobby FDA for the approval of xenazine. It's too bad that it has gotten such a bad reputation. When my daughter was first going on it, one of the nurses at her home freaked out and tried to stop it. She went as far as calling Allison's neurologist at MGH . I'm glad that she didn't succeed as it has been a godsend.

Howard. I'm so glad to hear a positive story about xenazine and so glad it is helping your daughter..my dads swallowing is awful as are his movements, so I'm really hoping this mec will benefit him, I do understand the risks of depression, but in our case I'm more concerned with him choking/aspirating. So hoping xenazine will prove to be beneficial for him too.