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 Additional dose of Seroquel added -- anyone with experience? 
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Joined: Mon Sep 09, 2013 9:16 pm
Posts: 29
Location: Texas, USA
Post Additional dose of Seroquel added -- anyone with experience?
Mom and I visited with Dad's neurologist today. We had a very good discussion and based on Dad's symptoms the neuro somewhat revised his diagnosis of Alzheimer's and stated that it's probable that Dad does have LBD. We're glad for something more concrete regarding his dementia.

Dad has been very active in the evenings for the past 2-3 weeks, with agitation, anxiety, delusions and obsessions. It's been way worse than "normal". We discussed this with the doctor and decided to add a dose of Seroquel after supper in the evenings. Dad has been taking a 50mg pill at breakfast and a 50mg pill at bedtime. We're hoping that adding the 50mg dose in the early evening will help with his evening activities, and will give my Mom some respite and rest!

Does anyone have any experience with adding a dose of Seroquel? I know that when Dad initially started the med about 1-1/2 years ago it made him quite drowsy. He usually went back to bed after breakfast and slept until about 10:30, and slept well during the early part of the night. I don't think either of these doses work quite as well as they once did, but they still help him. We gave him his first "additional" dose yesterday evening. I sat with him for a while before heading home, and before I left he decided he would lay down on the bed. I could tell he was becoming drowsy. Mom said that he got up a little later and sat with her to watch some TV. Then he began wandering a little and rummaging through things. He sat down on the floor to go through a drawer and had a rough time getting up, I'm sure because of the effect of the pill. He decided to go to bed at about 8:30 and slept through the night, which he doesn't do very often. The doctor wants us to call in about two weeks and let him know how Dad is doing.

Has anyone had any experience in this area? Will he eventually adjust to the evening dose? Will there still be some "acting out" during the adjustment period? At the end of last year we tried to up the night time dose to two pills, but he seemed to be adversely affected by that amount, perhaps because it was doubled all at once? We discontinued the second pill at that point. I'm hoping that this current change might be of benefit to him.

Thanks in advance for any responses!


Fri Oct 11, 2013 5:17 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Additional dose of Seroquel added -- anyone with experie
My husband takes 50mg three times a day and hasn't exhibited any adverse effects from it. He is still very delusional and still hallucinates but has fewer episodes of combativeness than before. Although, yesterday morning he pulled the shower aide's hair.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Fri Oct 11, 2013 9:12 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3430
Location: Vermont
Post Re: Additional dose of Seroquel added -- anyone with experie
It's very hard to say how 1 person will be affected by an increased dose, or even a particular med, when they have LBD because patients have such different reactions to the same med. What works for one person can make another's symptoms worse, so there is no telling how it will affect your LO - you just have to try it, and make sure that increasing or decreasing meds is done slowly. There are lots of posts on here about that - that is 1 thing you can count on with people's experiences with LBD and meds - slower is better.

If he is sleeping more from the increased dosage, that is probably a good thing, because that is less time for the hallucinations, delusional thinking, acting out, etc. and it'll give your mom more of a break.

Is she able to get out and about some? That will be very important for her health to get regular breaks from the routine of CGing. Best, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Oct 11, 2013 9:26 pm
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Joined: Wed Nov 13, 2013 3:04 pm
Posts: 44
Post Re: Additional dose of Seroquel added -- anyone with experie
My mother was on 25 mg, day and 50 at night. Her hallucianations and delusions, obsessions, became unbearable, so her night-time dose was increased to 75. After about a week, she was the meanest person on earth and swung at me. I could not even get her to a doctor's appointment. Soo. the psych PA, out of my desperation, changed her to Risperdal, which was a nightmare...she lost her memory as to "place". She became extremely weak. So...now we are trying Zyprexa to help control her delusions. She is at a facility and declined food recently due to "poison". This is a living nightmare. She may outlive me.


Wed Dec 04, 2013 4:21 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3430
Location: Vermont
Post Re: Additional dose of Seroquel added -- anyone with experie
Denshaw - please take care of yourself. It is true that many times caregivers die before the person with the condition/disease due to the stress. You don't want that to happen. Make sure that you have time to get away, do things to relax, and get support from friends, relatives, acquaintances, etc. If you get sick, where will that put your LO? You deserve to have a healthy life despite needing to be a CG. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Wed Dec 04, 2013 8:48 pm
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Joined: Fri Nov 05, 2010 11:30 pm
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Location: southern cali
Post Re: Additional dose of Seroquel added -- anyone with experie
hubby was on 25 mlg for one year for hallucinations and delusions.. seem to help then break thru hallucinations agin a year later so we increased to 50.. so far so good for that year.. then almost like clock work the following year, this year june, break thru delusions and hallucinations,,, 24/7.. increased to 75.. didnt help.. in july increased to 100.. seemed almost worse… the 25 in the morning and lunch added.. .. terribly anxious, still h and d.. all the time.. no sleep…..got worse and worse.. went to hospital 2 weeks ago for med stabilization.. they added risperdalh.. took away serequel.. kept adding and depakote up to 800 milg.. still like on speed the added gabpertine(?SP)… finally somewhat calmer. but so drugged.. not eating, still not sleeping and h and d still there but milder.. but he is mess.. can talk understand commands.. which he could before. doesnt know me or any one for that matter.. doesnt look at me… looks to the side with head *… meeting tomorrow with doc.. they are going to release him???? they want him to go to nursing home..

what have we accomplished.???. nothing that i can see except hes worse… i think he could tolerate 50 mlg of serequel.. any more a adverse effect… and the risperdone put him right over the top… all i can say is go slow…. .. hope we can remove him and slowly hope to bring him back to what he was before.. but it amy be too late.. everyone reacts different.. good luck to you and your LO!!!
cindi

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Thu Dec 05, 2013 12:30 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3430
Location: Vermont
Post Re: Additional dose of Seroquel added -- anyone with experie
So sorry things have gotten worse, Cindi. I hope someone figures out something that will help him. Take care, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Thu Dec 05, 2013 9:43 am
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Joined: Sun Dec 15, 2013 9:48 pm
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Post Re: Additional dose of Seroquel added -- anyone with experie
My husband had a very bad reaction to Seroquel to the extent of becoming violent and threatening. This may not be the same for you but do take care.


Mon Dec 16, 2013 1:42 pm
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Joined: Mon Mar 08, 2010 9:32 pm
Posts: 120
Location: Dumfries Va
Post Re: Additional dose of Seroquel added -- anyone with experie
I know everyone can be different. On Nov 3-7 my wife was admitted to the hospital for being non-responsive. I could not wake her, her BP was 116/39 and when I could see her eyeballs they were rolled back into her head. The doctor in the ER quickly blamed the indicent on Seroquel and said one our age (72) and with Dementia should not have Seeroquel. They immediately took her off it. Along with Crestor and Lisinopril. She finally came out of it after 3 days but because tests did not reveal the cause, they put her as under observation and discharged her after 4 days. Because she was changed to "under observation", she was entitled to rehab under Medicare rules. But the physical therapist recommend she not go to rehab or anywheres but home. It has taken over a month but she has come back some. Sleeping better then ever, 12-14 hours a night. Now the exelon patch is being removed as she had lost over 75 pounds since being on it. I will not let them put her back on Seroquel. She has only been violent when she was on Azilect and when she had a UTI. But, I understand everyone is different. :oops:


Tue Dec 17, 2013 7:30 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Additional dose of Seroquel added -- anyone with experie
Not only do LBD patients have different reactions to the same drugs but drs. have such different opinions too! My dad was 89 when he was put on Seroquel and it appeared to help him, so that's interesting that your wife's dr. thought she shouldn't be on it because of age. Hmmmm…..
Does her dr. think there is a direct cause and effect relationship between the Exelon patch and weight loss? I haven't noticed anyone saying this before on the forum or with people I know in my community either. Have you asked her dr. about this because it could be that she would be taken off of something that is not really affecting her weight but may be helping her be calmer. Could it be that the weight loss is just a function of the progression of the disease like it is for so many LBD patients and not a direct effect of the Exelon?
Take care, and hang in there. You are fighting the good fight and helping her in so many ways. Big hugs, Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Dec 17, 2013 7:57 pm
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Re: Additional dose of Seroquel added -- anyone with experie
Very interesting that doctor worried about seroquel for a patient in 70's. My mother's neurologist, who is one of the top specialists in dementia nationally (and a colleague and friend) recommended it strongly when she started having delusions that were very disturbing and causing risky behavior. She responded well, and when behavior returned after 6 months or so, he increased the dosage, and then again after another 6 months (though she is still on pretty low dosage, I think now 50 mg twice a day.) And she is 97 1/2 now.

There was some publicity about added risks of cardiovascular incidents, reported by FDA maybe last year, and they recommended caution with older patients. But the literature is for much higher dosages, modest increase in risk, and over a 5 year follow-up period. This was far lower on my scale of worries with my mom being 96 then and in much more danger from the delusions and her reaction to them. Charlie and I estimated it might increase her risk 10-25% (compared to whatever it would be without seroquel) between now and when she turns 101. This was so not a worry for me! She's 96 with dementia and thinks the building is on fire and tries to run outside in the rain, and I'm supposed to worry that her risk of a heart attack in 2017 is going to be 12% instead of 10%??? Nope. Not. An. Issue.

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Wed Dec 18, 2013 2:03 am
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Joined: Mon Mar 08, 2010 9:32 pm
Posts: 120
Location: Dumfries Va
Post Re: Additional dose of Seroquel added -- anyone with experie
Lynn, yes I have talked to the doctor about al this. I understand that weight loss comes with LBD as well but she has gone from 187 to about 100 since starting on the Exelon patch 5 years ago. There is a warning on the phamplet that says causes weight loss and loss of appetite. It doesn't says that is a side effect of just a low dosage either. It also addressed UTI's which she had many until put on a daily antibiotic (Bactrim) She was initially given 50mg but we could not keep her awake. Almost like the way she was acting on Nov 3 when she was admitted to the hospital for being non responsive. It took the doctors about 2 hours in the ER to wake her. Then she was very distant and had no idea what was going on or who we were. (I know with Dementia that can happen in a strange place) So, she is on the 4.6mg now for 2 weeks and if her appetite doesn't increase they are taking it away altogether. (Exelon Patch) She has been on a very low dosage of 12.5 mg of Seroquel and I didn't notice any difference. She is sleeping much better since they stopped the Seroquel, Crestor and Lisinopril;..


Wed Dec 18, 2013 6:59 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3430
Location: Vermont
Post Re: Additional dose of Seroquel added -- anyone with experie
This is only a sample of 1, but my dad had lost probably 100 lb. prior to being put on the Exelon patch. So, for him, it was the progression of the disease and what the body does in its last year or so. He'd lost over 135 lb. by the time he died and was a mere shadow of his former self. He simply didn't want to eat much, and that became more and more his behavior. If he wanted food, I'd make sure he was fed, but if he didn't want to eat I didn't want his CGs to push it since he was in final stages and the body doesn't tolerate food well towards the end.
It's really hard to watch this with our LOs. My heart goes out to all of you going through this. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Wed Dec 18, 2013 1:22 pm
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Joined: Mon Mar 08, 2010 9:32 pm
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Location: Dumfries Va
Post Re: Additional dose of Seroquel added -- anyone with experie
Lynn I hate to admit that I think the end stage is near. She really wants nothing to eat. We are giving her Pediasure but not pushing it either. I jsut keep trying everything I can to keep her going. Drinking is something I really push because antoher YTI would probably be the end.


Wed Dec 18, 2013 1:56 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Additional dose of Seroquel added -- anyone with experie
My thoughts are with you at this very difficult time. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Wed Dec 18, 2013 2:01 pm
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