Feed back on seroquel ?

Just Bill

My wife's neurologist got back to us and prescribed the lowest dose of seroquel one in the morning and one at night. I would appreciate any feedback from anyone who has experience with this drug. Right now she takes lamotrigine and effexor in the morning and aricept and ambien at night. We are way past memory loss and cognitive impairment and all the way into alternate reality hallucinations and delusions. I am hoping the seroquel will help reduce the realness of her hallucinations. As usual when introducing new medications I am nervous.

Rescue mom

Not sure what the “lowest dose” is, it often depends on weight…but my DH was Rxed what the geripsych said was “lowest dose” for him (180 lbs) which was 50 mg (I think mg, but 50) 2x day. He had delusions, thought he saw me doing things, which led to extreme anger and physical threats.

One pill knocked him out for 14 hours, so I only gave 1x day. After 2-3 days the doc said try cutting pill in half, which I did, which still knocked him out for about 8 hours. The delusions went away in about a month, not sure it was the meds, or just time.

Many here say Seroquel has been a lifesaver for them.

storycrafter

Hi Bill. Seroquel has been a life saver for us. When dh (FTD) first started it he slept a lot, but that wore off after two weeks and gave him back some decent quality of life. The trick is starting low and very gradually increasing the dosage; expect excessive sleepiness at first, but everyone is different. It took about three months to work up to a therapeutic dose for him of 300 mg. For us it is a miracle drug. Best wishes....

M1

Absolutely worth a try Bill.  My partner takes it without any side effects, so far just at bedtime.  Can be dosed anywhere from 12.5 mg (1/2 a 25 mg tablet) up to 800 mg a day in schizophrenia, so there's a very wide range.  Always good to start low and increase from there.  But absolutely should help tamp down the delusions and erratic behaviors, whether or not it eliminates them entirely.  Usually has good effects on sleep fragmentation (the reason we started it) and appetitie.  Good luck, keep us posted.  Pretty clear she needs to try something-for both your sakes.

Faith,Hope,Love

My husband has FTD and was having audio hallucinations and some behavior issues.  The neurologist started him on 25mg twice a day.  It helped some, but not nearly enough.  He then increased it to 50mg which helped more but he was still exhibiting outbursts and shoplifting.  It seemed like the 50mg worked for a while and then his brain found a way around it.  He's now on 75mg twice a day and I really think it needs to be 3 times a day.  His behavior is much better, but you can tell when it wears off in the afternoon.  He starts hearing God talk to him again and wants the car keys so that he and God can drive to the store and pick up all the free stuff.  He gets a little drowsy when he first takes it, but that seems to pass after an hour or so.

Vitruvius

DW was started on Seroquel / Quetiapine about six weeks ago.  This Rx has worked wonders for her.  DW was started at 12.5mg in the evening moving up to 25mg after about a week.  Theses are tiny pills and the smallest size is 25mg so you have to cut them in half to get 12.5mg.

DW has a rare variant of FTD (Semantic variant of Primary Progressive Aphasia) and is in very late Stage 6.  She did not tolerate other medications we tried very well, but she tolerated Quetiapine just fine.  It does make her very drowsy and giving it in the evening is typical as it induces sleep. It also seems to have reduced her appetite, although it hard to tell what is caused by medications and what is just the progress of the dementia.

Her neurologist suggested trying 12.5mg in the morning as well but warned that this often makes the patient very drowsy so we may not want to continue it.  This proved to be true for DW, it zonked her out all morning and a morning dose didn't seemed to provide any further benefit so after a week trial we discontinued it.

The Seroquel / Quetiapine has significantly reduced her delusions which was her primary issue.  These delusions frequently caused her distress for hours.  Although she still has minor delusions, they are no longer of the scale that cause any distress.  She had and still has mild hallucinations but they were never troubling.  So far this dose has been adequate to get her back to a reasonably calm and pleasant state and we (neurologist and I) do not plan to increase it further at this point.

Pam BH

Bill, I'm one of the ones that Seroquel is a lifesaver.  Like your wife, he went from minor, sometimes humorous, altered reality to some serious delusions and hallucinations. Started off at 25mg at night and increased every couple of months by another 25mg until he's now at 150mg at night. When he first started and at the increased dosage he'll sleep longer for a couple of days and then he'll go back to normal sleep times but a much more restful sleep. The delusions and hallucinations are still there but they don't cause him the anxiety they were.  M1 described it best as tamped down.  I hope it works for your wife - and for you.  The stress can be indescribable.

Joe C.

Bill, Seroquil was a lifesaver here. DW’s delusions were that people were coming to kill us and she insisted on getting out of the house all hours of the day and night. She was first prescribed 25 mg twice a day but after the first dose I started cutting the pills in half because the full 25 mg made her almost comatose. It takes a few weeks to see the full benefits of the medication, in DW’s case delusions started to decrease after about 2 weeks and completely disappeared after about 6 weeks. Over time We had to increase the dosage and once DW acclimated to the medication it no longer konked her out when she went back to taking the full 25 mg.

harshedbuzz

I would give it a try.

Seroquel made it possible for dad to remain in his home with my mom until about 2 months before he passed away. 

The lowest dose pill is 25mg, but it is routinely halved by individuals who need smaller doses. I know of a lot of little kids with ASD who take 12.5mg. My dad started on 25mg in the early evening for anxiety driven agitation that trended into aggression and threats. He was already taking Prozac and Wellbutrin for anxiety. His geriatric psychiatrist added a 25mg am dose when his delusions and hallucinations became more of an issue. Dad's hallucinations never seemed to trouble him especially- he heard kids upstairs, he saw little people entering his room through a tiny door that didn't exist and once I nearly sat in the lap of a long-dead golf buddy how wasn't really there. His delusions were sometimes darker but were often triggered by things he saw on TV-- parental controls went a long way to manage the worst of that.

One caveat, when dad started Seroquel, he did seem sleepier for the first couple days but that side effect passed pretty quickly.

HB

MaryG123

I know nothing about seroquel, and from others comments, it sounds like a great choice for your DW.  In my experience managing my DH’s psych meds for many years, I found that it’s always a good idea to remind the docs and pharmacist about the other meds they’re on in case those doses need to be adjusted when the new one is added.  Your DW is on quite a few meds, and you want to be sure to avoid additive effects or negative interactions.

Scooterr

Bill, like everyone else, Seroquel is a life saver. The neurologist started DW on 25mg x 3 a day. She was on that dose for about 4 months and her hallucinations, delusions, and her some what aggression has slowly decreased over time. She now only takes 12.5mg and that's at bedtime, and on occasion when she has a rough day I give her an extra 12.5 at lunch time. It's definitely our drug of choice.

ImMaggieMae

Bill, Seroquel was prescribed for my DH’s agitation and  obsessive/compulsive behaviors. He was not aggressive or threatening and was not experiencing hallucinations. As far as I know, there were no delusions unless brushing his teeth, cleaning his glasses, taking multiple daily showers, trying to take the trash bins down to the street every 10 minutes was caused by an unexpressed delusion. If asked, he would just say it needed to be done, generally looking right past me when talking to me. He started on 12.5mg, half a tablet, which stopped most of the behaviors within a day or two. He was taking aricept and memantine as well at the time. Seroquel did not make him groggy but helped him sleep at first. Behaviors  came back within a week or so and dose was increased to 25mg. After another couple weeks it was increased to 50mg and it was then a trip to ER and a weeklong stay at the hospital to get his medications figured out. At 50mg he was bouncing off the walls again and not sleeping for over 36 hours.

After a couple days in the hospital they switched  to .5mg Risperidone twice per day. It has been a miracle drug for him. One increase about 7 months later, when agitation was coming back, but to a much lesser degree than before. It keeps him sleeping about 9-10 hours per night. It didn’t make him sleepy during the day. They also stopped the aricept and continued with the memantine. They recently upped the memantine, which has had some very big positive effects. But I’ll start another thread about that.

janhu

SO with Alz was on seroquel with zoloft and aricept; still paranoid so dosages were increased. Resulted in serotonin syndrome, hospitalized for a month, never really recovered. Was riding a bicycle pre-hospitaliztion, now can't even stand or sit up on his own. He experienced delirium in the hospital which contributed greatly to cognitive decline. IMHO the drug combo cut years off his life.

Rick4407

Hello Bill, Lots of comments about Seroquel helping, that's our case as well.  Started at 12.5 mg went up to 25 mg within 2 weeks stayed there for a year or so.  Now she takes 25 mg about 5 PM and 50 mg about 6 pm and goes to sleep about 7.   She still has some delusions, but no agitation from them.  They pass very quickly.

I see the sleep side effect as the most positive, she sleeps for 12 hours on her current dosage. As she is hyperactive during the day, I treasure that long evening of peace.  Rick     

Colt99

One more Seroquel fan.  Last summer we were having evening meltdowns. I asked her PCP for something to help calm her.  50mg Seroquel in the evening. Like magic. No more meltdowns and ready for bed about an hour after taking pill.Sleeps about 10 hours with no side effects. 

I know nothing remains constant with this lousy desease but I hope this at least continues. If it does I think we could put off MC for quite a while.

 Mid to late stage 6. Currently dealing with toileting issues - where is it?, how does it flush?, what to do with toilet paper? etc.

Good luck.

60 falcon

It worked, for as long as it worked.  My wife had bad delusions, hallucinations, and agitation. She still does.  The Seroquel gave me hope, and my wife relief, but in the long run it just didn't work. Each time the dose was increased it worked well until it it ended up not working much at all.  She had no negative side effects.  Then the doc switched to Respiridone and within about a week, she essentially fell off cliff and into mid or late stage seven.  She has delusions, hallucinations, and agitation and a psychiatrist has prescribed olansapine.  She gets lorazepam for when she needs to be calmed down.  We're approaching three weeks in the hospital while meds continue to be fiddled with and we try to find a SNF that'll take her.  She's being treated only with comfort care while in the hospital and will be on hospice once we're able to place her.

Seroquel seems to be a good drug and worth a try.

Daughter of a Marine

My guy was diagnosed with Dementia about 10 yrs ago. Currently 74 yrs old so diagnosis was earlier than is common. He had extensive back surgery a year ago and anesthesia plus heavy duty pain meds left him hallucinating and completely unmanageable when we brought him home.  Dr prescribed Seroquel, 25mg and it was miraculous.  Stopped reaching for things that weren't there, talking, gesturing, etc.  I highly recommend a trial of this med - I anticipate my guy may need increased dosage at some point, but for now, it's a component of his Dementia med regimen, including Memantine and Galantomine. He tolerates this regimen pretty well, though does nap throughout the day in his chair.  Blessings to all who have a need to be here!

Lynne D

Count me among those for whom Seroquel was a lifesaver.

My HWD was combative during incontinence care and refused to wear incontinence briefs. He became violent. He started on 25mg once per day, which turned him into a zombie. I reduced it to 12.5mg once per day, which worked. The doctor instructed me to increase the dosage as necessary. He is now at 12.5mg in the morning and at night. I have instructions to 8ncrease as necessary.

Just Bill

Thank you all for your feed back, just gave her her first dose 25mg. If it makes her sleep I may be able to stop the ambien. I am just as nervous stopping meds as I am starting them. You know when it comes to side effects without any drugs at all her symptoms are worse than any of the side effects. Thanks to some very smart people in this group I am going to add a psychiatrist to her care team. It makes sense to have 2 people trained in pharmacology cross checking each other. That is another effing nightmare trying to find a psychiatrist that is taking patients, takes insurance and is in our city. I made some calls and waiting for some calls back but haven't made contact yet. Thank you all again for your wisdom and your eagerness to share it.

shardy

Hope it went well. Frankly you sound like I did a few years ago. I was so worried about what side effects could be I hard a tough time giving Jim that first pill.. It was one of the best decisions I made. We have increased multiple times over the last few years with no hesitation.

Our only problem with seroquel/quetiapine  was when Jim caught covid.

 Paxlovid does not play well with it. Our pharmacist told us for some reason it increases the seroquel strength 6 times. So our options were to stop it  or try decreasing it to only 1/6.. In the end we chose not to do the Paxlovid and luckily he had very few covid symptoms and recovered quickly.

jmlarue

DH started on the generic Seroquel (Quetiapine) 3 weeks ago. Initially, 25 mg on awaking and 50 mg bedtime. It was and improvement, but not a complete success. We've gone through a number of adjustments on timing and dosage. We've added a 3:00 pm dose and increased to 50 mg am, 75 mg at 3:00 pm, 50 mg bedtime. If DH has break-through hallucinations and anger ramps up, I have the discretion to give an additional 25 mg any time. I've only needed to do that twice, but both times it knocks him out for hours. Personally, I don't have a problem with that since I don't have to leave the house to remain safe. Still, it's not ideal. Introducing and stabilizing psych meds can be a challenge at home. The docs continue to suggest he return to in-patient treatment in a Psych Unit because they can make med adjustments more rapidly and are able to deal with any adverse reactions quickly. I'm going to give this another week or 10 days. If we're still riding the roller coaster, I'll probably re-admit him. Everyone is different. He may be one of those who needs to transition to Risperidone. I hope the Seroquel will work for your DW right out of the box. For a lot of folks, that's the case. Be sure to let us know how she gets along.

Just Bill

Well she slept good last night. Gave her pills with breakfast, she was out cold until about 1:00. Took her out to lunch and she is bouncing off the walls with energy. She tried to do laundry and forgot how to operate the washing machine. Got it to blink by pressing every button. She is running through the house like the tasmanian devil. She is still seeing the little girl that hides her stuff. I keep telling her I am getting rid of her she will be gone soon. Still very easily agitated. She is sorting junk mail right now. If I play that right I can stretch that 30 minutes. Then I will give her a pad and paper and I'll write something positive to get her started writing. That will last another 30 minutes. I'll finish with a mile walk in the heat and that should tire her out for the evening. So no change yet still delusional and easily agitated. No bad side effects so that is good so far.

JJAz

Bill,

If your DW is experiencing hallucinations, please review the  potential that she might have Lewy Body Dementia. It really matters when it comes to medication sensitivity.  Ambien is on the list of sensitivities of LBD.  Check out page two of the following link:

https://www.lbda.org/wp-content/uploads/2017/09/2017_diagnostic_checklist_-_updated_criteria_v2_1.pdf

Just Bill

Thank you Jjaz. She answers yes to everything on that list except no parkinson symptoms and seroquel is her first antipsychotic so I don't know how she reacts to them yet. As a precaution I have decided to wean her off the ambien.

Scooterr

Bill, when we first started my wife on Seroquel it took about 5 to 7 days to start seeing the benefits from it. I think it's a wise decision to slowly take your DW off the Ambien. The doctors had put my wife on Ambien, and it made matters worse (not saying it has for your DW), hallucinations coupled with nightmares. Once the Seroquel kicked in and the Ambien was over she started to level out. We did substitute the Ambien for Melatonin for awhile. Every once in awhile I still give her a Melatonin. Good luck.

Just Bill

Thank you Scooterr and everyone who responded. Today is day 2 of same drill she slept a little less this morning and woke up with zero agitation. Just as sweet as sweet can be. Still hallucinating but zero agitation. That is a step in the right direction. Still lots of energy and has a real need to be busy. She stayed so busy I was able to focus on a lot of physical exercise and meditation today. Great day today.

Faith,Hope,Love

That's great!!  Seroquel has been a life saver for me and DH also.

M1

Bill that is indeed good news.  If you find that the morning dose makes her too sleepy (and she may adjust to it) remember you can cut it in half.  On the other hand, if her symptoms eventually start to escalate again, you've got plenty of room to go up, and/or you can add a third dose  so it's morning, afternoon, night.