Seloquel

MBBny

 I am new here. My mother was diagnosed with ES VD in August. She has been prescribed Seloquel which is very concerning to me. Based on the info I have been able to gather, she does not have any behavior issues that would warrant being prescribed this drug. She is docile, but has had some anxiety and sadness in the mornings. I just saw this article from the Mayo Clinic which made me even more concerned. Would appreciate any help from those familiar with this drug and how it has been tolerated by those prescribed. Thank you! www.mayoclinic.org/drugs-supplements/quetiapine-oral-route/description/drg-20066912

M1

Welcome to the forum. There have been a number of threads about Seroquel. My partner takes a low dose (25 mg) for sleep fragmentation and agitation and it has been very effective with no side effects. It has a black box warning for cardiovascular events, but for many of us dealing with difficult symptoms of dementia it has been very good at improving quality of life. You won't know unless you try, and you can always stop it. It may well help her anxiety. Good luck-

MBBny

Thank you.

John2.0.1

My mom is on it. It helped reduce her anxiety when she was having delusions and would panic and wheel herself or crawl screaming down the hall that she was robbed when she forgot where she put her cookies.

She is still on it. The side effect we were most looking out for was drowsiness. 

She is still on it. Increased doses helped to reduce her aggressive behaviors

harshedbuzz

Seroquel made it possible for my dad to remain at home until weeks before he died. It improved his quality of life greatly. 

It really dialed back the anxiety and delusions that caused his most challenging behavior despite being on a SSRI for many years. Later, we added a second dose to help with hallucinations and help his sleep pattern be less fractured overnight. The most he ever took was 25mg 2x daily. 

Who prescribed the medication? Was it her neurologist or a geriatric psychiatrist? If you are the person who she's designated to make health care decisions on her behalf, you could certainly ask the prescriber why Seroquel or if there are other medication classes that could be trialed instead.

HB

Paris20

MBBny, I had the same concerns about Seroquel when my husband’s neurologist prescribed it for him. When I read about antipsychotic drugs and dementia patients, I could not give them to him. The warnings were scary. However, a couple of months later, my husband was having uncontrollable emotional outbursts as well as delusions. I agreed to the Seroquel and it has really helped him. After 2-3 weeks, my husband has shown no side effects. His impossible episodes have definitely decreased. I posted about it on the caregiver spouse boards.

bboop217

Mom was prescribed seroquel 25mg in July but after reading side effects we were afraid to have her take it. My brother, her direct caregiver, finally had to give her a dose this past weekend as she was just out of control with the paranoia, accusations, crying etc.

Today all hell broke loose all day long. An ambulance had to be called, she was tested for uti, and blood work done, all came back clear. Got sent home tonight where she proceeded to rant, scream and cry all over again. 

My question for those of you that have experienced giving seroquel to LO, how long does it take to kick in? days? weeks? months? She has my brother's household in an uproar. Can't take much more.

M1

Hi bboop, some effect ought to be fairly quick, bu t it's dose dependent and you may need to increase fairly quickly. It doesn't work for everyone. Ideally a geriatric psychiatrist can probably optimize dosage most quickly.  Unfortunately there was a recent thread about needing to just refuse to take someone home from the ER if their behavior is unmanageable. Hope things settle down for you.

MBBny

Thank you all for your responses. The hospice nurse and doctor have prescribed the Seroquel. My mother is 89 and in mid-stage. The hospice nurse today told my brother that the side effects may be more of an issue with people younger than my mother. Has anyone heard this as well?

towhee

Hi, MBBny, I have not heard that or read anything on the forum like that. I suspect that the meaning of what the nurse said got a little garbled from being passed thru multiple people. As you have learned from other responses the cardiovascular risk from Seroquel is accepted when it improves quality of life for the patient and the caregiver. Sometimes it is the only thing that works. Sadly, dementia is a terminal illness, and sometimes we choose quality of life over the chance of less quantity.  If your mother is still walking I would be more concerned that it would increase her fall risk and I would monitor that it does not sedate her at mealtimes. As other posters have said, Seroquel is prescribed for hallucinations and paranoia, for sleep (usually after other medications have been tried) and sometimes for anxiety(again usually after other medications have been tried). 

From your posts I gather that you are not the primary person in charge of your mothers care, and that you would feel more settled if you had more information about her treatment. Could you gently request such information?. A good hospice will try to care for the family as well as the patient.

SeekingSerenity

HI MBBny,

My mother is also 89 and also at mid-range. She has been on Seroquel ever since her trip to the hospital for other reasons and started calling the nurses "devils who were coming to get her" and refused to take pills until she talked to me because she thought they were giving her poison. That was 8 months ago and we are still giving her half of 25s morning and night. The only side effect we noticed was sleeping more. The fear of having that personality return outweighs the fear of giving such a pill. I hope that it works well for you and yours.

I am curious about Hospice. I was told here locally that they don't usually get involved until close to the last 6 months. I figured that mid-range or 5/6 of 7 stages was years from needing Hospice. How much are they involved at your level? I just never called because I didn't think they would be able to  -  or wouldn't get involved yet. I look forward to hearing others comments on same. Thanks.

ButterflyWings

Hi MBbny and Bboop- I am sorry for what you and your family are going through. We are typically not "pill" people. Not any religious or other formal opposition to meds, but we have been blessed to be generally healthy and have made pretty healthy lifestyle choices regarding diet, exercise, and social emotional care as much as possible which worked well pre-AD.

I say all that to be clear that modifying my own behavior was always a first choice in dealing with my loved one's ever-changing dementia challenges. Meds were just not the first or even 2nd thing we looked to try. Until his delusions, agitation, eventual hallucinations and general angst dictated it. I also learned here, that his behavior was likely reflecting terrible worry, fear, and other emotions that he could not properly express with his deteriorating brain, and that he deserved relief...with me being the one to help find it for him.

I also learned here: "care needs drive the decision-making". So when his excellent neuropsychologist said we needed to try a low dose of Seroquel, I didn't question it -- (ok actually I did consider all the wisdom shared here on these boards that supported this move.)

Heads up: the initial 25mg dose did nothing. We quickly increased it to 50 mg and DH was not sedated, had no trouble walking or other side effects but in less than 2 weeks his challenging behaviors were noticeably reduced. It is been 2+ years or so since then, with periodic increases now that we are stage 6c and recently his dosage was increased from 200mg to 250 due to breakthrough behaviors around sundowning time. He is exit seeking and impulsive so, is a risk to himself without med management. Despite all my patience, redirection and validation, it is not enough by itself.

Perspective: (may seem harsh) but with a terminal illness like AD, keeping us both safe and less stressed is the goal. I often say in all sincerity, Seroquel makes it possible for me to keep my DH at home. We can't afford outside placement and I don't want his disease to take both of us...so, it is worth any risk that a rare black box occurrence might put him out of his Alzheimer's misery before stage 7 (when the disease will have cost him every shred of dignity and capacity he ever had). It gives him a better quality of life right now and prevents the kind of chaos your brother and his family are currently experiencing which will only get worse as the disease and its symptoms progress -- which is inevitable. I tried the expert recommendation and it has worked so well for us. 

***Also, bboop has she been checked for a silent UTI? Hidden urinary tract infections make our LOs go off the rails, usually with none of the typical symptoms. Important to check for that.

Good luck!

jfkoc

Drugs always need to be carefully given and we, as caregivers need to be aware of side effects and interactions as well as why the drug is perscribed.

The Mayo article is valuable. That said ther are only 2 drugs which have been approved for AD. You are dealing with VD. I would google  that usage.

The quandry arises as to quality of life v the risk.

In your mothers case I wonder if the morning anxiety could be handled with non-medical treatment. Studies show that non-medical treatment is velry effective and drastically underused.

I think it is reasonable  to question why a drug is needed at all and why a specific drug is chosen.

Bottome line.....my husband went from MCI>Parkinson's> LBD. He did take Seroquel for some rather serious issues. I think it might have helped but things were still hard and got worse.

Gustersmith

My mom (age 76) was prescribed seroquel about 18 months ago.  Within a few months she developed tardive dyskinesia that unfortunately did not go away when she stopped taking the medication.  It happened at the beginning of COVID & I wasn't able to see her for several months because she was in an independent living facility, & by the time I saw her & noticed it, it was too late.  

So talk to the provider about the possibility of this side effect, & just keep a close eye on your LO if they start taking it so you can stop it immediately if they start smacking their lips, pushing out their tongue, etc.  It does seem to be really helpful for some people.

RanchersWife

Our hospice nurse said Seroquel is for when the “spiders are crawling on their arms.” There are probably less powerful drugs you can use to help with mornings. My LO doesn’t so mornings well but still gets up before 6 am every day. We have a routine and have served her breakfast every morning...even when she could still cook. The extra care makes her feel special.

We waited until I burned out and we HAD to hire caregivers to give me a break before we started adding drugs to help. We needed them because she doesn’t like the caregivers. She never has so it’s not new. Having these other people in her house has made the dementia behaviors that are inevitable worse. However, it’s caregivers for 41 hours a week or placement in a NH. Either way she would be anxious and thus medicated. 

Farm Gal

ButterflyWings,  I really appreciate your insight and wisdom into the topic of Serequel or other meds to temper the delusions, anger, etc but to also give the PWD a better quality of life.  I sincerely hope I am able to keep my much loved husband home with me.  Thanks again.

rwsel1