DW is on Namenda, Aricept, and Cymbalta. She is now showing episodes of psychotic behavior on almost a daily basis. Our PCP suggested that we add Abilify. Any spouses out there with first-hand experience with Abilify?
Iggy, my husband was on Abilify for 2 weeks to control his aggressivenes and episodes of paranoia. They took him off after that, because they felt his agression was under control. There is a black box warning about the use of Abilify with "elderly dementia patients"; I don't know your spouse's age, my DH is 58.
Thanks for your reply. My DW is 57 and early stage 6. I was made fully aware of the "Black Box Warnings" before the decision was made to put her on Abilify. Her behavior has become more psychotic over the past two months. She has episodes of delusions/hallucinations with crying jags. The crying episodes were so painful for her, and us, that something had to be done.
How long has your husband been off of Abilify? Did any of his behaviors return after the drug was discontinued? Is your husband still at home? Sorry for all the questions, but I have no one to bounce anything off of (like the rest of us).
Iggy, you might want to do a search over on the Alz Assoc discussion forums.
What I'm seeing there, though, is that it works well for some patients, doesn't for others. (What else is new.) Side effects can develop (what else is new), which go away if the patient is taken off. If adverse side effects developed, whether or not the psychotic behavior returned when the patient was taken off Abilify depended on how long the ADLO was on the med, and where the ADLO was in the disease. Sometimes it did, sometimes it didn't. (AD patients can "outgrow" the psychotic behavior, so you don't necessarily have to keep them on antipsychotics forever.)
How do you know when they've outgrown the psychotic behavior without discontinuing the med - and who wants to live on that rollercoaster? Kind of like the dilemma we face with Namenda and Aricept - when do we know it's outlived its usefulness?
Take them off a time or two and you can maybe find out. You can read my recent posts on the subject. I know the Aricept and Namenda are still very useful for my DH. He misses 1 pill and he is confused/ wound up, whatever. Right now and yesterday he is agreeable, quiet, eating, sleeping and causing no problems and we have had a good day while on the Aricept and Namenda.
Iggy, I haven't been in this situation yet, but the impression I get is that as long as patients are doing well, don't rock the boat. However, they can sometimes develop symptoms that might be adverse side reactions from the antipsychotic, and then the doctors do try cutting back a bit to see if that eliminates the new symptoms without the agitation starting up again. Sometimes that works. Sometimes the new symptoms disappear but the agitation comes back, and then they try a different antipsychotic. The newer "atypical" ones act via a number of different mechanisms, so switching to a different antipsychotic is less likely to cause the same adverse side effects.
But yes, very similar to AD meds ... you never know for sure, so all you can do is take your best shot, and see what happens.
my dh has been on abilify for several months. he is 52 yrs old and has done well on it. i tried cutting the dosage back and he has started crying again. i shouldn't have messed with his dosage especially during the holidays,but i thought i would try and see if he would be more alert. we just never know what to do. i just want to do what is best for him,and i can see he is going to have to stay on the abilify. he has done well taking it,but i had hopes if he didn't have to take so much medication that he would be more alert and interact. he has not had any bad side effects that i am aware of. his nerologist put him on it when he just cried all the time. my dh was never agressive with anyone but one of his brothers,and that had been steaming for awhile. when he fought him it was terrible and not like him at all. he could have killed him if he had hit him with the pipe he picked up. thank god his brother saw him and was able to keep from getting hit. that could have been much worse than it was. my dh is also in stage 6. he has not had problems in the delusions/hallucinations department,and i do think it is because of the abilify. he does take other meds also. razadyne,wilbutrin,lexapro,trazadone,keppra,celebrex,pepcid,xanex[as needed]. i also give him vit.e,multi vitamin and fish oil . i sure seems like alot of meds,but meds and dosages have built up over time. we do what we have to do and hope it's the best thing. my dh has been on namenda 3 different times and it made him worse. he could not tolerate aricept[stomach problems]. good luck. jav
Thanks for your response! What dosage is he currently on? Our PCP started my wife on 5mg. I've also noted that she has become less alert - we were warned about that. I don't like it, but the crying was unbearable. I've also noted some mild, intermittent dyskinesia/tremor of the forearm.
Iggy, sorry for the delay in responding. They had him on 5mg, he was less alert, his eyes were red and he was angry. They took him off because his behaviors "had stablilized" however, he has had aggressive incidents since he's been off the drug which was 2 facilities and 3 months ago. Actually based on recent events, in retrospect looks like he tolerated the drug well, at least better than low dose of risperdol which made him a zombie.
We went back to our doctor today for one-week f/u after starting Abilify 5mg. The crying jags/agitation are now almost non-existent. I was a little concerned about the degree of sedation/less alert - so was the doctor. He decided to cut the dose back to 2mg. Keeping our fingers crossed that the crying/agitation doesn't return. Next f/u in one month. Thanks for everyone's input.
iggy, my dh is taking 5mg 2xdaily. i had cut him back to the half pill 2x daily,that had worked for him at one time,but not now. dh does have hand tremors that are more pronounced now,possibly from meds,but that also goes with along with ad. my dhs tremors have gotten worse. he has been on keppra for the myclonic jerks for quiet some time now,it just does not take care of them all,but the severity has decreased them alot. we also saw dhs neurologist today. he told me he was in late stage six. i knew he was in stage six,but to hear that confirmed and the dr telling me that,well it just devastated me,of course i talked to the dr in another room from dh. i don't want him upset if at all possible. how do we heal our broken hearts,when they never stop hurting? it's just one terrible heartbreak after another and they just all run together into this terrible pain that just will not go away.dh dr said no more follow up visits unless we need him for meds adjustment or anything else i feel he needs to know. as far as the hand tremors go,he said if they were not interfering with dhs life,he didn't feel more meds was the thing to do at this point in time. if they get worse i am to call him. i hope your wife does well on the abilify. those crying jags are what just kill my soul. after your wife gets used to the abilify then maybe she will be able to tolerate the larger dosage if she needs it. it seems one week is not enough time for her body to adjust to it. some meds take longer,thats why they say don't give up right away.give it time. my dh was on the smaller dosage for awhile before his dosage was increased. good luck! jav
jav, I am sorry about your doctor visit. Why is it that we can plug along OK, doing what needs to be done, until someone verifies what we already know ... but just having a label put on it still is, as you say, devastating?
In our minds we put our truths aside hoping we are wrong about the diagnosis and stages that seem ever advancing-out of site out of mind?. then comes the medical opinion confirming our worst fears. end stages drawing closer. we have no where to hide from it-just horrific. so sorry Jav. Divvi
I think divvi nailed that one... there is no where to hide. Yesterday, at the doctor's office, I mentioned the fact that my DW was getting close to needing adult daycare (we have a wonderful Salvation Army adult daycare facility in our city). Her PCP then stated that we are probably closer to her needing a live-in care facility and that I needed to start looking at what's available. That's when the anxiety and fear started to kick in... I hate having to face this reality.
I wonder if she hasn't developed tardive dyskinesia in response to being on Abilify - it is a listed side-effect. On occasion she shows a very rapid twisting movement of her forearm - this was not evident before she went on Abilify. Day 2 on Abilify 2mg. and the crying hasn't returned.
I'm thinking of you jav ... I hope we find some peace.
god bless you all for you words of comfort,we are in denial,to a certain extent,hoping we are wrong or some miracle will happen. i am so devastated. dh has paced all day. i just went and laid down with him and our little grandson so he wouldn't pace and grandson would maybee go to sleep. now our tv has gone out. it tore up about 6 to 8 months ago and i debated before having it fixed,but then decided to go ahead since we couldn't affore a new tv. repairman said he thought it would probably work another year. WRONG! now here at christmas i have got to think of a new tv that we can't afford. i just want to get taxes and bills paid. my son does say the vizio tvs have gone down in price. i guess we will figure out some way to get one. i certainly am not paying to have the old one fixed again. if it was just me i wouldn't worry about tv for a while,i like to read,but the tv helps so much with dh,as long as i am in the room with him,he doesn't pace so much. iggy, maybe this side effect will lessen or go away in time. i hope so,i know that is scarey for you. sunshyne & divvi you are always ready to jump in and give words of comfort and wisdom,as are so many others,i truly thank you all for always "being there" when i need you. this site is such a blessing for us all. god bless joan. jav