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Is there a drug alternative to Seroquel?

27 answers | Last updated: Sep 16, 2014
Marilyn Hasler asked...
My 92 year-old husband has Alzheimer's and is on 100 mg a day of Seroquel. I have read that it is not good for dementia patients, but it is working for him. What do you suggest as an alternative for Seroquel that would have the same results? He also has excessive saliva and is always spitting and wiping his mouth. Is this common for dementia patients and what can be done about it? His doctors have said to learn to live with it. He may, however, live a long time yet and his constant spitting is obnoxious. Please help.
 

Answers
27% helpful
beandsemom answered...

I too have posted a question about Seroquel. It plainly says on the drug manufacturer's website that it should NOT be used on patients with dementia, but yet is on the Alzheimer's Association recommended drug list.

 

More Answers
78% helpful
GALOWA answered...

Hi Everyone.

My mother uses Seroquel, an antipsychotic which, for HER, works to control rage, outbursts, and a variety of inappropriate behaviours. She will be 82 in May. I am not advocating Seroquel IN PARTICULAR, but want to make clear that this drug has made the difference FOR MY MOTHER between being able to live with our family, as opposed to requiring a medically supervised institutional setting.

BEFORE the seroquel, my mother was aggressive, NON-COMPLIANT with any type of care provider, including medical personnel, VIOLENT, and generally unmanageable. Her life without the drug was WORSE than death. That having been said, we are not unaware of the POTENTIAL RISKS associated with the use of Seroquel for my mom.

However, WHEN WEIGHED AGAINST the REAL BENEFITS OF USING SEROQUEL, both FOR HER, and for her family, we have NO QUALMS, about using it. In her lucid moments I have discussed this with her, and she HERSELF is very clear that to the extent that it is an issue AT ALL, she would, without hesitation, CHOOSE QUALITY of LIVING over the QUANTITY of LIVING any time.

So, from the PATIENT's mouth, a patient who is still able to function somewhat normally, (due in no small part to pharmaceuticals,) QUALITY of living IS EVERYTHING...

As always,

Galowa

: )

©suzannemcable.2009

 

100% helpful
GALOWA answered...

Hi Everyone,

Galowa here again.

I neglected to state in my previous posting here on this issue that my mother has been taking Seroquel CONTINUOUSLY, without any evidence of side effects, for approximately FIVE YEARS.

She takes the Seroquel at bedtime, and, in addition to everything else it does, it enables her (and the rest of the family) to sleep undisturbed "through the night."

As always,

Galowa

: )

©suzannemcable.2009

 

100% helpful
GALOWA answered...

Hi Marilyn,

As regards the excessive saliva...

We beat that one by giving my mother hard candies to suck on. They add a few calories, which are always welcome, lubricate her throat, which makes swallowing easier, and generally make her happy!

Give it a shot! My mother likes butterscotch... But we also keep multiple dishes of VARIETY wrapped hard candies around, which she likes to HOARD!

Just need to carefully check all pockets before doing laundry... and accept the need to pick up the little wrappers!

Good luck!

Galowa

: )

©suzannemcable.2009

 

50% helpful
Marilyn Hasler answered...

Thank you, GALOWA, for your answers. I really appreciate knowing about the hard candies. I will do this, as the extra sliva and spitting has gotten to be very annoying. And i am happy to know that your family is comfortable with giving your mother Seroquel. I enjoy reading what you have to write. Marilyn

 

20% helpful
MarkTN answered...

I too need this answered by an expert. My mother is in late stages of AD and been taking Seroquel since 2009... 8 months into the drug she lost motor skills, speech and increased confusion. We had her checked for strokes, no strokes etc. It is my opinion the Seroquel caused the lose of motor skills and speech. If this drug is not supposed to be used for AD patients ( I found this out 8/7/11 ) according to the FDA then WHY are doctors allowed to write for this. It has also been linked to over 1800 early deaths in AD patients and AstraZenca settled lawsuits over this. If I stop the drug, what happens??? Somebody please help that can give EXPERT advise !!!

 

100% helpful
GALOWA answered...

Dear Mark,

Sorry about your mom. Seroquel works for some, but not for others. However, when it does NOT work, or has side effects, the side effects are not along the lines of those symptoms you describe your mother as having... If anything, her symptoms are EXACTLY those you would expect to see in end stage Alzheimer's. To blame it on Seroquel is pointless.

When Seroquel DOES cause problems in Alzheimer's patients, the problems are related to diabetic reactions, increased risk of pneumonia, heart failure, extreme anger responses, and in some cases " a more rapid RATE" of cognitive decline.

HOWEVER, until that decline occurs, for those patients who achieve equanimity on Seroquel, the drug can make all the difference in the world - making a sleepless, aggressive, hallucinating paranoiac balanced enough to REMAIN AT HOME and be CARED FOR BY FAMILY. It's a powerful tradeoff. Without seroquel, my mother would have required institutionalization over six years ago. She wasn't just "difficult," she was DANGEROUS.

She still takes Seroquel, but it no longer helps her sleep through the night. Now, the neurologist has added Trazodone, which seems to do the trick.

Always,

Galowa

©suzannemcable.08.24.2011

 

50% helpful
MarkTN answered...

Glowa,

Thanks for the response. I agree Seroquel may work for some, as I am sure the side effects vary as well. Just curious, are you are Geriatrician? If so then of course I would take you advise on my comment as to the drugs may have caused this as "pointless". I am so confused because I have other Doctors and Pharmacist ( 2 local Doctors and 2 local pharmacist ) that say she needs to be off drug and she should have never been introduced to the drug. That is why I turned to this forum for additional information. Thank you again for your response.

 

100% helpful
GALOWA answered...

Hello Mark,

Not a geriatrician! Not even an M.D., but Harvard educated, and have cared for my mom for seven years now. And, I actually DID assist her in transforming herself from a drooling, uncommunicative, knife wielding, person with dementia (which she was under my father's care) to her very BEST self - including, after two years under my care - being able to PASS A COMPETENCY TEST. So, I know more than" a few things" and perhaps a tad more than the regular caregiver.

It is NECESSARY to rely on M.D.s, but always best to go to them fully INDEPENDENTLY informed. I research everything myself, so when I walk into an office the doctor knows I am WITH him or her or even AHEAD of him or her at all times.

There are websites online which allow you to calculate drug interactions/ side effects. Just google "drug interactions" and multiple sites will come up. Check them out until you find one that feels user-friendly to you. The internet is a source of information, BUT NOT ALL OF IT IS OF VALUE. Don't forget that. Cross check everything multiple times across multiple sites.

I still maintain that to blame Seroquel for your mom's symptoms IS "pointless" BUT it is NOT POINTLESS to investigate other causes, INCLUDING Seroquel "in combination with other meds" she is on... Research is critical, but all research we read is based on someone else's trial and error testing - so do your own trial and error! Why is she on the drug in the first place?

My own mother is on Seroquel (HUGE dose, by the way,) Namenda, Trazodone, Zoloft, daily megavitamin, CoQ10, Fish Oil, 81 mg aspirin regimen, (reduces stroke etc.) the new 23 mg Aricept, and megadoses of both vitamins D and comprehensive B-Complex. She exercises daily and can still read, though sometimes she needs help understanding what she reads. She is losing the ability to make intelligible conversation, but can still talk (and walk four miles...)

She EATS LIKE A HORSE! She is fed CONSTANTLY while awake. And, she sleeps a lot! But after she has had all the sleep she "needs" she is higher functioning when awake. Many people try to force a normal daily rhythm on these folks, which I have found to be a mistake. She does best when she lives a "half-life" - that is all she can handle. However, the quality of her time in her reduced periods of wakefulness is greatly improved. I believe that, like any brain, the AD brain needs REST - and a great deal more of it than a normal brain - to function at its highest level.

My mother has been diagnosed with AD since 2004, but has been symptomatic since 1998... I took on her care after she pushed my father down the stairs to his death in 2004. Currently, I am making preparations to put her in care, as she needs increasing help with physical care, and I am unable to manage providing it. Also, as she drifts further into her world of the past - into her efforts to RECONCILE her past - I believe she will benefit most by being in the company of others like herself. It absolutely torments her to see my college aged sons leading lives she herself desperately wants a chance to relive...

So, I'm sorry! Not a geriatrician... ;- ) Though, believe me when I tell you - you are not the first to think so - or to ask! All the best to you.

Always,

Galowa

©suzannemcable.08.24.2011

 

50% helpful
GALOWA answered...

Mark

P.S. To get a REAL expert answer on this topic, on this website, I recommend that you:

REPOST THE QUESTION as a NEW QUESTION.

On C.com, "experts" usually "weigh in" FIRST. No "expert" responded to this thread and it's two years old.

Give it a try...

;- )

Galowa

©suzannemcable.08.24.2011

 

40% helpful
medicalresearcher answered...

The problem with any medication administered to dementia patients is the frequent inability to swallow the tablet or capsule whole. Many will frequently chew the medication which defeats the purpose of time release such as intended with Seroquel XR even though instructions are clearly given to not chew the tablet. In nursing home environments the actual delivery of medications is done by low level staff who really don't care whether the patient chews or swallows the meds so long as they are taken (and if questioned will swear the meds were not chewed). High dosage rates that are chewed can sometimes be fatal, especially for the more frail.

 

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An anonymous caregiver answered...

To MarkTN:

Some of the symptoms seem related to Parkinsons Disease. So you SHOULD check with the doctor, if your elder might have Parkinsons, as the treatment is really quite effective.

 

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50% helpful
An anonymous caregiver answered...

I have recently been researching Seraquel as my Dad is on it. A listed side effect IS the loss of motor skills so I am not sure why everyone on this thread is discounting that theory. My Dad had the onset of demintia and following that diagnosis, he had a mild stroke. He had hospital psychosis and they put him on seraquil. He would be alert until he took his meds. Within an hour to an hour and a half, he would not know where he was, could not finish stories or his train of thought; he would become confused; physcially he would move slower and more awkardly. The only meds he was taking that would have this kind of effect on him was seroquel. He began the process of weaning off the drug yesterday by taking a half dose. It is a heavy drug with numerous side effects. Swallower beware.

 

50% helpful
confused reader answered...

The Doctor is giving my friends 80 year old mother 100 mg of seroquel in the evening and 25 mg. twice a day. She is confused and hallucenating. I also have read about the side effects and FDA warnings. I was also told by a Doctor, that over the counter meds. are worse for you than a prescribed drug. Is that true?

Confused

 

67% helpful
Jcai answered...

Hi Galowa, What does the max dosage of Seroquel your mother use? My father is 94, he screams and laughs day and night, but doctor said max dosage he can us is 50 mg. It does not help anymore. Jcai@02.23.2013

 

100% helpful
GALOWA answered...

Dear Jcai,

My mother is in the very late stages...and weeps and screams and cries non-stop when awake. She takes 200 mg at bedtime, and when she's awake we give her 25 - 50 (AT A TIME) in 45 minute intervals UNTIL she settles down... So 50 may be the max, but "as needed?" can mean a lot of things. We know within 20 minutes if the most recent dose will "do it." She is clearly not only "in agony," but also TOTALLY beyond our control.

One bit of advice is to look at other meds. At this point in the disease, there is no point in giving any drugs other than those which help quiet what is left of the mind.

SO, no more anti-depressant (Zoloft, Prozac, etc as these are all ACTIVATING and generate nervous energy.) Also no more Aricept or memory aids, and no more Namenda. She needs Trazodone at bedtime or will not sleep at all.

If your current doctor is her primary and NOT a neurologist with experience in Alzheimer's treatment, he/she may not feel comfortable exceeding the current prescribed dosage. We are in uncharted waters here, medically - and our neurologist is willing to do anything to help - on a trial and error basis. Required dosage may vary astronomically from one individual to another. You MAY need to consult another specialist...

I hope this helps you. We are preparing to place my mom in care because, despite having dropped down to a mere 90 pounds, she is unbelievably strong and can be dangerous when agitated...

We are in the truly tragic stage here...

Sadly,

Galowa

©suzannemcable.02.23.2013

 

67% helpful
Jcai answered...

Hi Galowa, Thank you for all of your information. The max dosage for my father is 50 mg per day now. His dr is a neurologist. May be he thinks my father is too old; may be he doesn't think my father's symptom should not use more 50 mg. I will discuss with him to see if he can increase dosage for my father or not. Jcai@02.24.2013

 

100% helpful
GALOWA answered...

Dear Jcai,

WE are the ones "in the trenches" fighting this battle. So if your current neurologist is adamant about the dose, you may also ask for medications to supplement the Seroquel.

Also, Neurologist or not - you may want a second opinion here...

We are talking about a type of psychic agony for the patient and an impossible management situation for any caregiver. Keep me posted if you can.

PLEASE KNOW YOU ARE NOT ALONE!

Warmly,

Galowa

©suzannemcable.02.24.2013

 

Ahstreet answered...

Dear Galowa, It is comforting (strange term) to hear the same disturbing symptoms that we are seeing w/my mother who has suffered w/Alhz x several years. She is 91, physically well and strong, but can be extremely combative, hit, pinch, throw things; you name it. After trying many other meds and "adjustments" we began Seroquel not quite a year ago. We saw good results w/Seroquel for her in terms of attention span and connecting w/us, and more calm behavior.(she has always slept well at night, 10 -12 hrs). We still see the negative behaviors from her, but as she always has done, they come in cycles. With Seroquel [50mg 3x/day] her "good" days are much better and can last 2 - 4 days; cooperates, is pleasant, etc. Then she goes into a day or two of "so-so" days of mixed behaviors and then about 2 days of out-right combative behavior;she doesn't make good eye contact on these days. Then, exhausted by her negative days, she will sleep for 1 -2 days, not eating and very little interacting. Then guess what...we start all over again. I am likely to increase her Seroquel rather than some other things that have been suggested, but I have not heard of using Seroquel as a prn (as needed). I believe it has helped her overall, but because her behaviors are so cyclic, I have had a difficult time trying to figure out how to do it without making her too sleepy on her good days. She is in a care facility now, so I'm not sure how they can deal w/prn orders, but please tell me more about how the "as needed" orders are written for your Mom.

 

100% helpful
GALOWA answered...

Dear Ahstreet,

prn - "as needed" - to be determined by "OUR needs." (The caregivers' needs...)

I do not know how you define "combative."

For nearly nine years my now 85 year old mother has been living in our home. She has knocked out two of my teeth, broken my finger, burned me, kicked and bitten me, and pummeled me. "When she is good she is very very good, but when she is bad? She is HORRID..." We don't even count the verbal abuse as abuse.

She sleeps a LOT. However, between the Seroquel and all the sleep she does get, when she finally awakens, on her OWN schedule she is as near to normal, compliant and "human" as anyone with a brain like swiss cheese could reasonably be hoped to be.

What we have learned, which has, in part, led us to keep her OUT of institutional care as long as possible, is that SHE DOES BEST ON HER OWN RHYTHM. It is non-circadian, non-institutional, and involves a great deal of sleep. But when her brain is "ready" to turn on, her day begins - and she is as present as can be.

Using the Seroquel at night prevents nightmares, which disturb her brain rest, and also helps to coordinate her "awake time" so it coincides with ours. Her "nights are long and her days are short" this way, but her solace is increased - and so is ours...

I weep daily at what this illness has wrought. It is a horror.

Sincerely,

Galowa

P.S. Has it occurred to you that what is tiring out your mother are not the "negative days" but the "good days?" The effort required to have a "good day" TIRES the brain - leading it to become grumpier and more hostile until it is SO EXHAUSTED IT PASSES OUT until refreshed again... I think she likely NEEDS more sleep! All my best to you.

©suzannemcable.02.24.2013

 

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An anonymous caregiver answered...

My Dad had none of the symptoms described, no alzheimers, no dementia, his deficits were actually the types of things the drugs he was being prescribed would worsen and he has declined. He originally (at 73 with perfect absolute perfect health) had a bad stroke, and afterward, he had impulsivity, nothing barbituates and 24 7 care couldn't handle. He was absolutely non violent etc etc and the Veterans home he was at started adding drugs that made him irritable then transferred him to a hospital for "increased anxiety" then put him on a bunch of non necessary drugs including Seroquel, Excelon patch, luvox, all of which cause severe dehydration and he was already almost dead due to dehydration a year prior after being put on lasix for left foot pedal edema (he didn't have) and being diagnosed with pneumonia which I don't think he had and they discharged him back to the nursing home after 3 days on rocephen and within 1.5 days he was clinically dead. He just happened to wake up when I got there (5 hr drive) and slowly came back to life. Then his anti-depressants were dcd and the dr wrote an order of hospice for "failure to thrive". Then he was sent to the hospital that put him on seroquel that was a year ago. More recently they added remeron, luvox or fluvox. When an outside pharmacist questioned his dosage of Seroquel was when I found out that was what he was on. I dc'd it in two seconds flat when I read the side effects and I have not regretted that decision (1 month ago). They recently contacted me to put him back on it and I said no, ended up he had a UTI. BE CAREFUL and trust no doctor would be my advice

 

AndieMarie answered...

Thank you for posting this and all the replies. My Mother in law was just put on this today. She started having hallucinations yesterday and they have been getting worse. At least now, she is sleeping. They did check for UTI and checking electrolytes too. She had been dx with Alz over 3 years ago, but not sure how long she had it prior too. We will respond to any changes, positive/negative. She is on Aricept 23 or 25 and Celexa among the other typical meds for BP, Cholesterol, etc.. She is also insulin dependent diabetic.

 

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An anonymous caregiver answered...

The FDA warns to NOT give Seroquel to elderly dementia patients. The Seroquel web site does the same. Unfortunately, my mother-in-law who has Alzheimer's sporadically became agitated and was prescribed and has been taking it for over a year now. She has had other anti-anxiety meds introduced as well. This past weekend, she was unable to walk or speak. Yes, she is now manageable. Yes, she cannot hit or bite or rant (occasionally). My brother-in-law and his wife say the dose is low so it is okay. I might believe it if the manufacturer recommend it, but that is exactly the opposite of what their website states.

While getting a good night's sleep and rest is good, quality of life is not living to sleep through it.

There are other non-drug options that still need to be tried and possibly other drug options. If I have my way, my mother-in-law is going to enjoy her remaining time on this earth without life-threatening, life-inhibiting, zombie effects from these anti-psychotic and anti-anxiety drugs! While some affected by Alzheimer's may be too far gone, my mother-in-law was not and I believe she is not. It may take some work, but so be it. It is her life I am concerned about, and not about making things easy for everyone else at the expense of her life!

Don't give up on your loved one(s) by simply settling for the drug of his or her physician's choice if there may be better alternatives.

 

Darlene3924 answered...

Its been interesting reading all of this. This has been like a support group for me in a way, or a reminder that I am not alone in this, and there are many out there that are dealing with a crisis regarding a loved one. My mother is on 67 yrs old. However her health has not been good starting when she was diagnosed with Type 2 Diabetes 20 years ago. She became insulin dependent, then con compliant, which in turn lead to her first stroke in 2008. She overcame that pretty well, left with functional deficits to her left side that she learned to adapt to. It was at that time she was put on blood pressure medicine again that she needed to be on. That medicine threw her in to kidney failure. Just before starting dialysis, she was admitted into the hospital with lethal high potassium levels. That doctor is the one that took her off Lisinopril she was on for her high BP, after that her kidneys started functioning better, and she was out of kidney danger. No dialysis. But I had noticed her confusion worsening. She had minor shot term memory issues after her first stroke, but it escalated to total confusion to the point of getting lost and had to be found, or forgot how that the door handle was her way out of the car. We addressed this with the doctor and sent her on to Neuro..about a week later she had the 2nd stroke. Since then its been a nightmare in the making with her fighting me tooth and nail to hang on to her independence, even when she needed help and assistance. Next thing we know shes down in her home and had been down for a day or so in a diabetic coma (high). She has been in the hospital since. She is now in a nursing home for additional rehab. She was starting to make some improvements strength wise..but the confusion had not improved. Then she became paranoid to the point she thought her roommate was "out to get her" and they had to relocate Mom to another room. Good choice. She was doing better after that then they to me they were switching her from Risperdal to the Seroquel. I didn't know much about either..but did notice a huge decline in the 3 days she was on the Seroquel. Just to visit her was almost impossible. I spoke with the nurse and had her withhold that medicine that night and she agreed with me. Then she called and said they started Mom on Depakote the next day. Depakote is a seizure medication, but is used to treat anxiousness. I went and saw her the next day..and WOW..she was a changed person! That was the BEST ive seen her this whole time and this has been going on for 2 1/2 months now. I know some medicines work really good for some people, and may not work the same or as well for other folks. I think its a trial basis for each individual person per each individual drug. Good luck to all of you! My heart goes out to you all ! This is tough...

 

bethbaby answered...

Thanks to Galowa and everyone who has responded to this thread. I have always worked with dementia patients - and recently I have commenced working with patients with very advanced dementia with behavioural issues. I don't know much about seroquel or haliperidol except I do know doctors prescribe it for patients and I often read how it should not be used for people with dementia. There seems to be a dilemma. People who care for people with dementia are the experts in knowing what works best for their loved ones. I am sure doctors prescribe these medications based on their knowledge related to their experiences in knowing what is helpful. We all die. Quality of life ---- as we near the end of our lives should become the priority. Thanks to everyone above for increasing my knowledge and helping me towards evaluating best options in care for my patients.

 

Nappermisty answered...

As the caregiver of my grandmother that is 87 and has had Alzheimer's since 1996 I am proud that I was introduced to Serquel. My grandmother is not combative or mean at any time, but when she got to the point that she could not sleep for reaching for things that wasn't there, seeing dead folks that has been gone for years and trying to get up when she has not walked and been wheelchair bound for 3 years. This is a scary situation for a caregiver and the patient as well I am sure it's torment on their mind. She was on 50mg a day till a couple days ago. She went to bed as usual and it started. She could not close her eyes. She talked about people and to people that was both alive and dead. She not only ask them questions , obviously she was hearing a reply cause she would then answer them. It's sad and hard to watch but I am thankful for the meds. Cause with out it she would have to go to a nursing home. I can't work and stay up all night like that and it's not good for her body to go without rest.

 

 
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