Antipsychotics

​fesk

I've read several posts that people have had their loved ones on antipsychotics for behavioral issues with some success. I have read that they have been very helpful in certain instances and even that there weren't side effects for some. I am now in this situation with my loved one as a last resort and, while some medicines are helping with the behaviors, there are unwanted side effects (dampening personality, slowing quite a bit physically and mentally). The lowest dose possible of the medicine is being used.

I'd like to hear how much trial and error there might have been finding the best antipsychotic and, when you found the medicine that worked best, how successful was it in managing the behaviors and what side effects had to be dealt with. Also, did your doctor ever try to discontinue the medicine and was that successful?

Any input is appreciated - thanks.

Rick4407

Hello fesk, my DW started Seroquel about 2.5 years ago.  Initially 1/2 of the smallest dose, 12.5 mg.  Over about 2 month we progressed to the full pill, 25mg.  That lasted about 6 months and we progressed to 2 pills, eventually getting to 3 pills.  They were always spaced out over the afternoon/evening.   As time passed I started missing one and we decreased to 2 again.  Now we're down to just one but occasionally two.   We've never had any noticeable side effects.

I've coordinated with her neurologist's NP who is fine with "as needed".   The dosage changes were directly following what I was seeing.  The neurologist or his NP responded to my suggestions as I reported behaviors.  

The Seroquel has been very effective.  Good luck, Rick

​fesk

Thank you Rick.

Seroquel was tried, but unfortunately it wasn't tolerated. We tried another that helped with her symptoms but were hoping for less side effects. We cannot seem to find the right medicine - one that controls her symptoms but leaves her personality intact and doesn't slow her down so much mentally and physically. So very frustrating.

harshedbuzz

​fesk wrote:

I've read several posts that people have had their loved ones on antipsychotics for behavioral issues with some success. I have read that they have been very helpful in certain instances and even that there weren't side effects for some. I am now in this situation with my loved one as a last resort and, while some medicines are helping with the behaviors, there are unwanted side effects (dampening personality, slowing quite a bit physically and mentally).

Are the medications being prescribed by a geriatric psychiatrist? I understand that neuros can and do prescribe psychoactive meds and that a wait to see a geripsych can be inconvenient, but they are the experts in this area. Dad was maintained on a low dose of Seroquel, but the doc also treated his underlying anxiety with an SSRI and NDRI (which countered the apathy the other meds can have as a side effect)- his neurologist wrote Seroquel as a OSFA approach. 

The lowest dose possible of the medicine is being used.

If your LO is taking a non-XR version of a antipsychotic, you may be able to cut it in half for an even smaller dose. It can also be compounded into a suspension to make a lower dose version. Some people react beautifully to doses that are much smaller than others especially if they are being cared for by well-trained caregivers who use strategies like validation. Sometimes, the timing of the "side effects" can be disease progression. This makes sense if the behaviors you are reaching out to treat are new or have escalated. 

I'd like to hear how much trial and error there might have been finding the best antipsychotic and, when you found the medicine that worked best, how successful was it in managing the behaviors and what side effects had to be dealt with.

Dad's initial neuro started him on Seroquel in the hospital after I told him my mother would not be safe around dad without something to level out his aggression a bit. Dad was diagnosed fairly late in the game and was well into midstage mixed dementia and recovering from a psychotic episode. He offered 25mg at dinnertime. It wasn't perfect, but it dialed back the anxiety and aggression enough to give us space to learn and try calming strategies. 


Also, did your doctor ever try to discontinue the medicine and was that successful?

No. 

We did have something of a blind trial when the SNF doc did not transfer dad's prescription for Seroquel to the local pharmacy on discharge. It was not a good thing and nearly led to dad being sent to a geripsych hospital for medication management and immediate MCF placement. I had moved them to an apartment near me during this time. The new chain pharmacy had no record of my dad prior to 2000 when he moved to MD and FL. They found another "John Buzzed" with the same exact birthdate and filled his prescriptions. I got a call from mom's hall bathroom asking me to hurry over as dad was acting out. I was able to settle him down and when I checked his medications for a clue, I noticed the tiny, printed address for a man who resided in Sacramento. 

After this, we took dad to a geripsych for meds management which was much better. I thought I'd never get dad to buy-in, but he loved his psych appointments. His geripsych agreed with my assumption that dad probably had some mental health issues his whole life- probably bi-polar given family history although a few friends in the biz I know who have laid eyes on dad thought there was more psychopathy involved. I mention this because the Seroquel would be a drug of choice in that case and he did well on it. 

We did discuss tapering off in the late stages, but for dad the end from aspiration pneumonia came quickly before we got a chance to start it. 

Any input is appreciated - thanks.

jfkoc

Please remember to start any new med at a tiny dose then titrate up. Also read all side effects and  interactions before buying. I use drugs.com but there are others on line.

​fesk

Thanks harshedbuzz and jfkoc.

To answer a few of the questions.

Her current doctor is not a geriatric psychiatrist but a geriatric specialist in this field with a lot of experience. I am currently looking for a geriatric psychiatrist to review everything. 

I have always done and continue to do a lot of behavioral management. I am fine with a lower dose and some behavior to manage. It does not need to be perfect - just manageable/safe. 

I agree it's difficult to tell what is a side effect or progression of the disease. It's so very difficult to navigate. 

We are starting at the smallest dose possible, and I do read up on all meds and check for interactions. 

Thank you again for the responses. Hopefully, the right med can be found so she is comfortable and has a good quality of life. It shouldn't be this difficult.

VeeM

I wish I had an answer for this. I had not logged in a few weeks ad decided today because I am having the same issue. My mom had been doing until early this year she started having behavioral issues (mild compared to now) and was prescribed Zoloft by her neurologist (well her physician assistant) I really like and is knowledgeable in the subject. She did well for a few months but more severe aggression, wandering, and bolting started summer of this year. Since, we’ve tried Removing Zoloft, adding namenda, adding seroquel, and lexapro. She did worse with namenda and that was quickly discontinued. She started at the lowest dose seroquel 12.5mg twice a day, which did nothing for her. After several dosages and mixes, she is now on 50mg seroquel twice a day and 5mg lexapro. This happened after we took her to a neurologist appointment where she was aggressive, tried to pick up the scale, threatened multiple people, and we struggled to get her in the car and prevent her from taking off. I can’t say that she doing better tough, she has moments of calmness, happiness, agitation, and crying all within a day EVERYDAY. She is more confused and physically slower and the only positive benefit I’ve seen is that she is not as physically aggressive. We are giving this new adjustment some time to see if it works and in the meantime we are trying not to lose our minds.

​fesk

I hope you are able to find the right answer soon VeeM. My advice is to keep a daily log of when the medicine is given and what her symptoms are. You may see a pattern emerge. I would also recommend changing only one medication at a time. If more than one is changed, you don't know what may be causing an issue. The issue could be withdrawing one medicine or starting one that doesn't agree with her or another medicine she is taking. Also, I'm sure you've done this already, but have a UTI ruled out.

VeeM

Thanks for the advice. Yes have definitely only changed one medication at a time which is why it is taking so long to figure things out. I know it’s for the best but the waiting is so hard. And yes UTI has been ruled out. Will definitely keep trying until we find the correct mediations.

jfkoc

I hope you will keep us updated

​fesk

Thanks for the support - I will.