My son is 24 with JHD since age 10. He is now in advanced stage. He no longer expresses depression or suicidal ideation. He has stopped self-injurious behavior (burning) .He is on cymbalta, remeron, and tetrabenazine. Is there a point in advanced HD when antidepressants can be weaned off? Can I discern over- medicating/sedation from advancing disease? Thanks for your guidance.

Why do you want to take him off the anti depressants? I'm not a doctor but I would think he is no longer showing self-injurious behavior or suicidal thoughts or depression because his med's are working. My husband slept pretty much all of the time when he had end stage HD. It's hard to tell whether it's the medicine or the disease, probably a little bit of both. But I believed then and I still do that the medicines he took made the disease more tolerable for him. He continued to take every one of his medicines right up to the day he died.

I agree with Marg, I would not take him off his meds as long as they weren't causing any intolerable side effects.

Carla

I don't want to oversedate him. I wonder if the flat affect, difficulty processing communication, slow initiation of speech, and unpredictable sleep/wake cycles are disease or medications. Would he participate more in daily life if he wasn't in a medication haze? I was interested in finding out if anyone had decreased the medication as the disease progressed. Thank you for your thoughts.

I have read that as HD progresses sometimes physicians will lower the dosage of medications used to treat chorea. I dont know about the antidpressants, not sure those meds would necessarily be sedating anyways.

I have read that as HD progresses sometimes physicians will lower the dosage of medications used to treat chorea. I dont know about the antidpressants, not sure those meds would necessarily be sedating anyways.

I'd like to make a suggestion for you to talk with your son's doctor/medical team about.
You listed medications of cymbalta, remeron, and tetrabenazine. My mother was once on a similar combination but like you I found that she was a complete zombie and it limited her cognitive function.

My mother has the adult-onset form of HD. Like your son she is in the advanced stages. I have some thoughts here, my own opinions, though I am by no means a doctor. My mom takes ABHR gel which is a cream that is applied to the wrist. This was recommended at a time she was on hospice care because as swallowing was difficult and rashes were happening it was better to offer a topical cream so she didn't have to worry about ingesting meds. The medicine has (Ativan-also known as lorezepam, Benadryl, Halidol, and the Reglan, which helps with nausea) a few times a day, (two to three), which means she is getting less of a dose per administration. This medicine helps psychiatric symptoms and when administered in this form/dosage she the medicine was delivered in such a way that her behavior and affect approved, according to my observations (and that of her nursing home staff). She was withering away but with the reglan, it increased her appetite, she gained weight and got well enough that she transitioned off hospice and has been off for more than a year now. We kept her on ABHR gel even after she was dismissed from hospice and I feel that she has continuity with the medicine in her system.

Depression meds are crucial for HD patients. All the literature focuses on depression meds. I have seen my mom's phychiatric symptoms with or absent of medication and I wouldn't take her off a depression med ever. That doesn't mean that you can't ask for a re-evaluation of her depression med. Sometimes they work for a while, then there is a tweak in the dosage needed or a change in the type of depression med- but that's a conversation with the doctor.

I know that tetrabenazine is at this time strongly advocated for by the Huntington's disease society of america. It may work for some people. The warnings if you read the Rx say that it is not for use with patients with HD. It also says it can cause an increase in suicidal ideation/risk. I at first went along with the tetrabenazine recommendation and went through months and months worth of advocating between insurance companies and doctors to approve this very expensive med. In the end, my observation was that mom's ability to make speech decreased rapidly and she was like a zombie, drooling all over the place and with glass overed eyes. With ABHR gel added, I had my mom weaned of tetrabenazine and I will not ask for that again. My mom's doctor agreed.