Concerning seroquel

Ed1937

I've been doing a little research on seroquel since the hospital doctor put my wife on it without my knowledge. This is something I found on both the site for Mayo Clinic and medlineplus,gov. Seroquel should not be used for behavioral problems with older people with dementia. It can increase the chances of death while taking it. I think the reason they put her on that is because she was so vocal about going home, and they just didn't want to be bothered by it. I'm getting ready to let administration know about it now.

Berryette

Ed-  I am new to this forum and so I hesitate to offer suggestions, but my husband's doc told me to give him CBD gummies.  I can tell such a difference!  He is really happy.  He is not depressed and agitated.  It doesnt make him groggy or sleepy either.  Just content.  It took a bit to find the right dose for him- I was giving too much at first.  Now he only need 12.5mg daily.  But I can increase when needed.  Good luck!

M1

Ed, all of the antipsychotics carry that "black box" warning about use in older folks with dementia--Risperdal and Zyprexa too.  Sometimes it's a risk that has to be taken, and the doses used in dementia are typically pretty low compared to the doses used in other psychoses.  But it absolutely should not have been done without your knowledge, that's the part that is not defensible.

toolbeltexpert

Ed I hope that someone their fesses up to their mistake, I just don't understand how something this important didn't warrant you consult.  I'll be watching your post cause I know you have the tact to resolve this. I continue to pray for you both.

Gig Harbor

Ed I tried one dose of Seroquel with my husband and the effects were dramatic and I decided not to continue it. That said a lot of people with dementia take it with good results. He was very agitated and that was why I gave it to him. I would hate to have him live in an agitated state but it seems to have stopped for now. It the choice is being mildly sedated versus highly agitated and unhappy I know what I would want if I were the person with dementia. We don’t like to see someone sedated but sometimes it is the only way to make their life bearable. I hope you can find something that works better for her.

Jo C.

Ed, M1 of course is right on spot.  What bothers me is that you were not notified prior to initiating the med, that lesser measures were not consistently tried first; AND; that the possible spector of  hospital induced delirium with two hospital admissions was not thought of as a cause for the behavior changes and steps put into place to identify that possibility and then put a plan of care into action to assist.  Also, how long ago was the last culture done to rule out a UTI?  One can have had a UA and culture done a week or so ago, but that does not mean a new UTI has not surfaced.  New patientagi resident and perhaps jumped too far too fast.

As for the antipsychotics; when all lesser measures fail to assist a person with dementia, and they are in a dreadful state affecting their very quality of life, it is sometimes the only med to assist will be one of the anitpsychotics.  When it came time, when my LOs behaviors were like Dante's Circles of Hell, and nothing, nothing helped, Risperdal was initiated at a "start low and go slow," I was so worried.  But in our case, the med was like a miracle and quality of life was restored for my LO. Was it perfect?  No; but it was SO, SO much better. She was on it for several years as she could not do without it each time we tried to taper; we were blessed in that she had no side effects and was not sedated.  It simply quelled all the delusions, agitation and aggressiveness and constant upheaval that existed on a 24 hour basis.

My step-dad who had Alzheimer's Disease came to a state in which he too had significant behavioral issues that could not be helped by using consistent lesser measures.  Like both of my LOs, we did not want to use the antipsychotic, but there was no other option. Seroquel was intitated.  Again, start low, go slow and he benefitted mightily and his life was once again with quality.  He too was on the med for years and had no side effects.

Just one person's story; I wonder if your wife was perhaps having hospital induced delirium from the changes,and if putting such a strong med on top of such a condition if it does exist, may have caused the outcome it has. 

Before initiating the antipsychotic to my LO, I checked with my LOs primary geriatrician, and with the cardiologist; each felt the risk as per the black box warning was very low. Due to the dreadful hellish state my LO was enduring, it was the only answer to bring my LO relief as there was so much severe suffering.

I do not know if this is true or not; but long ago, when reading an article, it was stated that the black box warning came from audits of medical records of very elderly patients in  NHs who had all sorts of co-morbidities; in that article, it stated no patients had been screened in person who had heart attacks or strokes.  Wish I had saved the article but did not and cannot find it despite having looked. So; there will be a benefit for these meds for some patients, but I think that if this were me and my LO, I would feel that the physician jumped the gun and certainly did not do what should have been done and that was to contact you first.  Not acceptable.

So hope all goes better and begins to settle soon.  You have worked so hard to get your wife to much needed care, and you are already a wonderful advocate on her behalf.  Just sorry you have to go through all of this.

J.

Faith,Hope,Love

Hi Ed.  My husband started taking Seroquel Saturday.  The neurologist explained the black box warnings and stated that since my husband's health was good there was only a 3% chance that it would cause him a problem.  He also said that you have to weigh the value received from a med over the risks.  I agree with what everyone else said.  They sure shouldn't have given her anything without checking with you first.  But, just thought I would add what our doctor said.

As an FYI, he's taking 25 mg once a day for one week, then goes to 25 mg twice a day after that.  I didn't notice any calming effect until today (day 4).  It's definitely reduced his agitation.  He's only mentioned finding the "Lost" car keys once today and returning items to the store.  Hopefully this trend will continue.

ButterflyWings

Ed, Ditto what everyone agrees... meds should not be started without your awareness & ideally permission.  If she had a prior allergic or other negative reaction to a med for example, families would be able to help avoid a possible disaster. Did they defer to your POA DD and bypass you, do you think? When DH was in MC for 2 wks respite recently, I declined the permission for the MC doc or nurses to give any meds that I did not bring with him, and wrote on the form that ANY changes even in dosage levels were to be cleared with me first. (Not with his personal docs or hospice. Me. His wife & DPOA). Mainly because I’d have to deal with the aftermath once back at home, which did happen still - and that causes our LOs unnecessary problems. I got the feeling they thought they were the experts & I should just shush. Same thing happens at the ER and it is not OK. I thought it was partially that I’m not a Dr (well not that kind anyway). But M1 went through the wringer too. “The system” could do better as I’ve said before. OK, mini-rant over. 

I just wanted to say my DH’s experience has been exactly as Jo C described. Out of control, beyond belief and more likely to cause a heart attack (mine!) and risk harm to him or others. Then, Seroquel and life is more manageable, he is definitely not sedated and is currently taking 300 mg daily. He started at 25mg (no effect), up to 50 pretty quickly and then upped it to 75 mg after about 6 mos — this was stage 4. Now, in late 6(d)/- he is tolerating it absolutely fine. Three years so far and without it I would not be able to keep him at home. 

When you meet 1 person with dementia, you’ve met 1 person with dementia as they say. But I wanted you to know he was 130 lbs or so, when it was prescribed. Makes a huge difference though the harmless delusions and hallucinations continue, the dangerous ones are controlled with this med. Quetiapine (*Seroquel) is my hero.

Ed1937

Thank you very much for the replies. This morning I got my hands on the list of medications she came with from the hospital. Now I'm really fuming! It's no wonder she is so confused and disoriented and fatigued!! They had her on so many different drugs that I didn't know what they were for. I'm just now beginning to understand why she is the way she is. I think there was enough to make an elephant sleepy. I'm not sure exactly what she is taking now, but a list is being made for me. I have a feeling I'll be stopping more than one or two meds. This is surreal. Just for the record. I'm not against new meds if I think there is more of a benefit than a risk factor, but I'll admit that I'm a little conservative when it comes to meds. So was she.

harshedbuzz

Ed1937 wrote:

I think the reason they put her on that is because she was so vocal about going home, and they just didn't want to be bothered by it. I'm getting ready to let administration know about it now.

Mayor Ed-

Behavior is communication. The medication was likely given not because they don't want to be bothered but because your wife is suffering from anxiety related to disease progression and transitioning to a new place with new routines without the ability to understand why. You also mentioned delusions and potential hallucinations. These would all be indications for Seroquel. She no longer has the cognition to follow a reasoned argument, the short term memory to learn to adapt easily to the situation and lacks the executive function to sooth herself. Meds may make her more receptive to validation and redirection.

HB

toolbeltexpert

Ed I never thought about what they did in the hospital, this is making more sense. I agree with HB, the part about routine and her anxiety,plus all the other changes.  You're  a great advocate for your dw..

Tony484

The hospital discussion above was very enlightening. 

As far as Seroquel, my DW was one for whom Seroquel was almost magical.  There was a dramatic reduction in at-home anxiety and agitation, which in turn seems to have led to better cognition.  For example, pre-Seroquel DW sometimes did not recognize me or our home and was constantly anxious. Post Seroquel she is "generally" relaxed, she never wonders who I am, and rarely gets confused about the house. But there are still some anxiety triggers and so we are trying (via her PCP) a gradual increase in dosage, and have just gone to 100 mg in the morning and 100 mg at night. I want to believe that the changes (in anxiety level anyway) will last, but who knows?

Ed1937

Thank you all once again. What a great place to learn and have someone hold your hand when you're lost.

harshedbuzz wrote:

Mayor Ed-

Behavior is communication. The medication was likely given not because they don't want to be bothered but because your wife is suffering from anxiety related to disease progression and transitioning to a new place with new routines without the ability to understand why. You also mentioned delusions and potential hallucinations. These would all be indications for Seroquel. She no longer has the cognition to follow a reasoned argument, the short term memory to learn to adapt easily to the situation and lacks the executive function to sooth herself. Meds may make her more receptive to validation and redirection.

HB

Thank you, HB for pointing that out. Sometimes I need someone to shake me, and say "look at it this way".

The hospital did have her on a lot of new stuff, but almost all of it was not kept in the MC. The seroquel was cut in half, and the pharmacist said they felt that was the right thing to do at this point. 

I called the hospital, and complained about not being included in deciding what medications would be added or changed. I will receive a letter about my complaint, and an investigation will take place. Then it will be brought up in a weekly meeting they have to address things like this. Then I will receive another letter explaining what they are doing about the situation. I explained that this call was not about me. It was about the next family who has a member suffering from dementia, and how they would be treated when their LO was in the hospital.

Two of our kids visited their mother this morning, and another talked to her on the phone. All three said she was definitely not confused today. She's still talking about my girlfriend, and complaining about not going home, but it's better than yesterday.

M1

ed free advice is worth what you pay for it, but I'd be happy to look over the list if you want.  Just an offer, no pressure at all, it's fine not to.

Jo C.

You are all just absolutely awesome.   And I mean it.

J.

Ed1937

M1 wrote:

ed free advice is worth what you pay for it, but I'd be happy to look over the list if you want.  Just an offer, no pressure at all, it's fine not to.

Thank you for such a generous offer. I'll take you up on that, but I don't have a complete list yet. Something has to be verified by the hospital, then I'll get it. Probably tomorrow. I'll start a new thread for it. Thank you again.

 

DJnAZ

With my wife recently placed in memory care, this discussion was particularly important and very helpful. During her hospital stay prior to placement she was on resperidone with mixed results. One day calm, later that same day not.

The memory care facility put her on Seroquel after seeing how anxious and agitated she was on arrival from the hospital stay. It took over 48 hours but according to the charge nurse late today she is much calmer, less agitated and her using the word terrible as a verb, noun and everything in between has slowed. She even had a short conversation with one of the nursing staff about makeup. This may be an anomaly, but I will take any progress over how she was after being admitted.

I was advised by the nurse of potential side effects but she echoed a comment above that her chances of suffering side effects was less than 3%. Small steps are huge at this point.

Ed1937

DJ, I'm glad you have something positive to report. I hope it continues to get better.

Paris20

Ed, I think it might be helpful to tell my story about Seroquel. My DH, diagnosed with AD in 2015 was becoming extremely agitated, verbally aggressive, vulgar, and combative. At the point where I was starting to fear a physical escalation, I spoke to his neurologist. He prescribed Seroquel but, after reading the dangers, I refused it. However, after a worsening of my husband’s symptoms, I agreed to try the Seroquel. The results were dramatic. My husband calmed down enough to be able to stay at home. He still had his moments but they were less frequent and less severe. 

Last month my husband had a paralyzing stroke. My first thought was «Seroquel!» I’ll never know for sure. My husband had other predisposing conditions for stroke. Did the combination cause the stroke? Does it matter anymore? What rings in my head is the neurologist’s words to me when I first expressed my concerns about Seroquel’s side effects. He said «That’s all we’ve got.»

Ed1937

Paris, thank you for the post. I remember that he had a stroke. You asked "Did the combination cause the stroke? Does it matter anymore?". No, it doesn't matter. The only thing that really matters is that you don't ever think that an option you took caused the stroke. You did what you thought was the right thing to do, and it was.

ImMaggieMae

My DH has been taking Risperidone since Sept, and like Jo C mentioned, it seems like a wonder drug even though they’ve had to increase it once. He was on a low dose of Seroquel prior to that for a couple of months. That worked for a short time, but then, even after increasing the dose, it didn’t. The Risperidone keeps him asleep all night and makes his repetitive behaviors much easier to deal with during the day. The black box warnings scare me, but while he was never violent or threatening, he was just bouncing off the walls with different repetitive behaviors prior to taking it. It wasn’t fun for him and it made life miserable for my sister and I, his 24/7 caregivers. Late stage 6 is still overwhelming sometimes but there are a lot of hours when things are calm. He isn’t agitated all the time like he was before.

Ed, the first time he ended up in ER, they gave him so many drugs that his heart rate was dangerously high and his liver values were way out of range. They had to admit him to the hospital for several days to get things back in line. That’s when they suggested the Risperidone. Sometimes you have to weigh risk vs quality of life.

AnnMB

DH is on 75 mg of seroquel which our GP put him on. Started with  25 mg and moved up to 50 then 75. The doctor and  I talked about it during office visits. We've also talked about future increases not happening unless it's absolutely necessary. I would be upset if he was put on a higher dosage without me being consulted.

Though DH does not have a Personal Care Directive, I will be the angry Momma Bear if they (hopsital or care home down the road) don't let me know of new or increases of medications. I have half a mind to print out a legal online PCD and use it rather than one from the lawyer. We can do that in Nova Scotia. That way I can explain it carefully to DH and let him read it before signing it. He does understand but isn't quite sure if he needs one. Once done, I will be the one that is contacted about anything rather than others saying they need to be contacted over me. This happened with DSIL's mother. She had a PCD and DSIL was the person to contact. Other family members were interfering when she was in the hospital and a care home. DSIL had to remind them of the legal document twice and threaten a lawyer would be in contact before they adhered to the directive.

Ed, I hope you get this sorted out so you will be contacted the next time and also other families will be treated with respect on this issue. About the amount of meds, I'd be talking to a doctor or the pharmacy to see if they are necessary (doctor) or if there is any chance some are affecting/disrupting the effectiveness other meds (pharmacy?).