in the hospital they gave my husband 4 doses of seroquel a day to keep him calm. No wonder he was zonked! I brought him home and have been giving him one at bedtime only, which was okay. This morning he was grumbling and uncooperative so I thought well, maybe try one in the daytime.
It hit him like a ton of bricks as he was walking to breakfast in his walker. He almost couldn't move. Couldn't eat. Slumped over. We got him into his chair glide, upstairs, and into his recliner, where he stayed until lunch. At that time he woke up, came down, ate enough to choke a horse, and has been fine ever since!
I think I'll try melatonin tonight instead of seroquel.
Seroquel has been a life saver for me. My husband takes 50 mg at night. He used to take 25 mg in the morning but the geriatric doctor he sees told me to only give him the 50mg at night. He used to take a nice afternoon rest now he does not. He is now pacing. I really don't care about that. He never got enough excercise but now with pacing he is getting his walking in. I will wait till the mid-September appointment to see how he is doing from now till then. Either way with or without the morning Seroquel he is and has been extremely easy to care for. I think he is probably Stage 6-c. I took melatonin once and I felt like I had been pulled through the eye of a needle in the morning. For me I stay away from it.
Seroquel kept my husband at home for an additional 2 years. It was a lifesaver for us also. Husband went from 25mg at bedtime to 250mg 4 times a day before I could no longer care for him at home.
Seroquel has been a miracle drug for my DH because he was struggling with extreme agitation. Now, he only takes 25 mg. at night. If the agitation would come back as before, I would not hesitate to increase his dosage. He sleeps a lot during the day, but if he has company or we have an apt. he has no trouble staying awake. I think he is just plain bored. I think it's time to start thinking about adult day care.
Jayne-I wish I could have gotten my husband to a "senior drop in center", The ones near us allow the spouse to put money into the kitty so the spouse who of course is a "volunteer leader" gets paid for his time. Bill wouldn't buy it.
THe good comments I'd read here about seroquel is why I tried it (once the hospital had given it to him and prescribed it). But for him, it was no good. I DID give him the melatonin last night and he was ready to get up when I went in this morning (he hasn't been, for a while) and has been in a good humor so far today.
I think all this just falls into the category we know so well: seen one AZ patient, you've seen ONE AZ patient!
briegull, none of the drugs are great. Because this is not one disease but a group of diseases we all tend to try different meds and different strategies and sometimes they work and sometimes they don't.
If they could get an actual test for Alzheimer's. If they could really tell if it is Vascular Dementia and just that and not Alzheimer's too. If...
Meanwhile we try whatever is out there that the doctors can think of, and maybe they work and maybe they don't.
On the other hand the first high cholesterol drug they gave me almost sent me to the hospital with stomach cramps so bad I thought I was dying. The second one was no problem - I've been on it for a couple of decades now. Even without Alzheimer's being involved sometimes one drug works and another doesn't.
Wow, no Lynn has never reacted that way to seroquel at all. He was already sleeping a lot without any medications. So I noticed no change in that area. But, he is more alert and happy when he is awake. I think its because the severe sundowning he had, even though he slept a lot, it wasn't peaceful. I only give Lynn the 25mg at night, but if I ever DO want him zonked out, maybe I will try it in the day too lol. Best of luck finding something that works for you guys ~Nikki
I've never heard of Seroquel. what is it? A tranquilizer? or sleeping pill or what? At what stage do they prescribe it? DH is probably at the top end of stage 5 but he sleeps pretty good and doesn't have rages. He gets upset and angry once in a while but nothing to need anything like that. I'm just curious.
Seroquel is a anti-psychotic, also called a mood stabilizer. It is used commonly with Bipolar. It is not a particular stage but the symptoms that determine its use. Main side effects are sleepiness and it stimulates the appetite. Some people respond well and others actually do worse. Doses can range from 25 mg per day to 600mg per day. That is it in a nutshell.
How long does a person have to be on this drug before you notice a difference? My husband started 1/2 of 25 mg in morning and 1/2 of 25 mg at 2:00 p.m. in the afternoon today. Does it take 3-6 weeks to take effect?
I give DH 50 mg a.m. and 50 mg pm. It does seem to prevent the rage--makes him more mellow. Haven't noticed any side effects. We started with 25 mg twice a day, but that didn't do anything, so his doctor increased it. It is a potent drug and can have really dangerous side effects, but his doctor assured me this is a small dose so I thought it would be worth the risk. Age and physical condition may play into the dosage--his doctor said that an 18 year old male schizophrenic, for example, would be given a much, much higher dosage.
Forgot to say that I read Bluedaze's comment about the drop in center where they let the spouse put money in the kitty so the LO can be "paid". That is brilliant! All adult daycare facilities should make that a standard operating procedure! The main reason DH attends daycare Mon.- Fri. is that he thinks he's getting paid--fortunately, he has long term care insurance and I tell him their reimbursement check is his pay. Without that, I doubt that he would go. And of course, he thinks he's a volunteer.
We've been trying Abilify (prescribed by her PCP) for DW's behavior which would be deemed "psychotic" if it was noted in someone without an AD diagnosis. Constant agitation, delusions, and hallucinations from about 30 minutes after waking up until her head hits the pillow at night. Did any of you try anything on your spouse other than Seroquel as their first anti-psychotic? We were at Mayo this past week and our neurologist said that he doesn't use anything other than Seroquel. We may be switching to Seroquel this week.
I was telling my daughter last night that, at least, we weren't having problems with bowel incontinence. Spoke too soon - two episodes today. Neurologist and PCP both have observed that she is heading south at a very fast rate (current working diagnosis of AD/EOAD). Did any of you note that bowel incontinence occurred within a few months of the appearence of "psychotic" behavior. Thanks!
Thanks to everyone for posting on this venue. I am new to this website, so I hope you will pardon my beginners mistakes. Inre Seroquel, etc. My wife is the patient and she has been taking Lexapro for depression for years. After, and a long time before, she had become agitated, angry, mean and almost untrollable. Her AD dr put her on 25 mg seroquel twice a day. Not much improvement. Long story short, we are now on 50 mg three times per day plus 20 mg Lexapro, plus 20 mg Welbutron. Is she over-medicated? I don't think so, because the results have been wonderful and she is not a zombie. In fact, there doesn't appear to be any downside, but, her Dr watches her closely.
I realize that these drugs are potent and dangerous, but, the alternative is not acceptable.
2ndtimearound, I am glad you posted. Now where were you the last few years? *wink. I needed help with Lynn's psychotic behaviors, he was abusive, full of rages and hot tempered. I DID ask for help from his VA doctor. I was told of the "black box" warning and told they didn't like to prescribe these meds to AD patients.
Last year after being pushed so hard he broke my ankle, I called my neuro in tears. I knew their HAD to be something that could help curb these behaviors. Seroquel was the answer. He called up the VA and let them know just what he thought of their policy too! Needless to say, the VA now fills his prescription.
It works for Lynn, but he is still abusive verbally. I can deal with that, but I find now, I will not tolerate the hitting and shoving. Alzheimer's or not, it is beyond wrong. Two weeks ago I was out shoveling. He came out to "help" I thought everything was going fine, when out of the blue he came up behind me and whacked me with the shovel! Thank god it was plastic! But still hurt! Black box be damned! I upped his dose right then.
"I realize that these drugs are potent and dangerous, but, the alternative is not acceptable." I agree!!!!!!
oh Nikki, we had no idea it was that bad. you give him WHATEVER med you need to stay safe. he is out of his mind and would never hurt you in his right mind, we all know this. something more than the seroquel may be added if hes not in control. there ARE meds out there to control the antics and the moods. get on the horn with your dr and demand help. if needed you find yourself another dr that will listen. Divvi
((Divvi)) you are such a delight to my battered soul. Thank you for always reaching out to me. ((hugs)) You had no idea because I kept it a secret. Much in the same way most victims of domestic abuse do. The difference is his abusive was from Alzheimer's and somehow in my twisted thinking, that made it ok. Once I clearly saw it wasn't, I realized - By my keeping it a secret I was part of the problem and not the solution. I am determined to be part of the solution now. It is hard to talk about! But I know I am not the only one dealing with this, perhaps there are others out there keeping it their secret too. I think things of this nature should and need to be talked openly and honestly about. Again, thank you!
Nikki, thank you for speaking out as you have! You probably are helping many people out there who read us who are going through the same thing you did, and now they know that they are not alone either. You have taken a brave step, dear one. You have always been special, and now even more so! Take good care of Nikki. I love her.
My DW has been on Seroquel for about 5 years, she now takes 225mg a day it has done a good job of helping control the behaviors.
As I write this she is in the hospital, her blood pressure was abnormally low Tuesday, they sent her from the Dr's office straight to the ER, from there she was admitted to the hospital. The stress test and Echo of her heart appear to be normal. She was discharged yesterday afternoon. We took her home, after she had been home a couple of hours she complained of being dizzy and "buggy" in her head. We took her blood pressure over the period of an hour and a half, it is now abnormally high, so we went back to the ER where she was admitted to the hospital again.
Her Neurologist stopped the Seroquel yesterday and put her on 5 mg of Abilify in the AM and 10 mg in the PM. I don't know if there was any connection or not, he thought it was a good idea to change the medication. I don't know how this change is going to work out, we will see when we get her home.
I am guessing one of the reasons Seroquel is used first is because it is considerably cheaper than Abilify. The cost for a 30 day supply of Seroquel is around $ 300.00, a 30 day supply of Abilify costs $ 1500.00. Thank goodness for my $ 40.00 co-pay!
It says under the side effects of seroquel it can drop blood pressure among others, rapid heart rate, dizziness, abdominal pain, etc. the doses should be increased in small amounts like we do with aricept and namenda. if you miss a week or so you should have to start over with dosing again and move your way back to normal doses. we were on seroquel and we know that it can alter blood sugar chemistry in the body. this can lead to diebetes. we had this happen and DH was having to check his blood 3/day for over a yr due to this drug and another we took zyprexa. both work well in most individuals but some who are predisposed to diebetic can not tolerate the meds. we stopped the drugs due to severe side effects which were more harmful than beneficial. i know many here have terrrific results with seroquel. Divvi
Nikki, I join everyone in admiring you for opening up about Lynn's behavior...Your health is paramount now, which you know. Keep the Dr. phone lines active.
Damn Mary, you got me all chocked up here! Thank you all for your support. ((hugs)) Something that put things in perspective for me about caring for Lynn is visiting all the different nursing homes. If he has an outburst, or if he for some reason can not stay on the seroquel, he will be removed from the facility and placed in the psyche ward until they can get him "adjusted"
I thought to my self, this is standard practice. Why did I ever believe just because he was sick this behavior was ok? Now, looking back on it... It shocks me all the things I tolerated. I think I felt I needed to honor my vows. But the thing is, Alzheimer's has no honor! It is cruel and relentless. Sadly as hard as I fought I couldn't beat it, I have lost this war. *sigh
Jimmy, I am sorry to hear your wife is having issues and I hope the new medication is able to be the miracle seroquel has been to me. I just can't imagine how bad Lynn would be without it. Frightening! Keep us posted, Nikki
She is home now, we started the Abilify this morning. she seems a little anxious today but it isn't bad. I'm sure it will take a few days to tell how she is adapting to the medication change. They increased the doseage of both of her BP medications and eliminated another medication.
Nikki, you have not lost the war with AD. You lost a battle to it and I am not even sure that you really lost when you consider what you have been up against in how the disease affects him.
Not all facilities will send a person to the psych ward or each will have different rules on when to send a person to the psych ward. This is true even among those facilities that are only Alzheimer's patients.
I think we need a better definition of what winning when dealing with this disease is.
Thank you therrja, I hadn't looked upon it this way. I guess I somehow naively thought I could stop Alzheimer's from claiming ALL of him. I couldn't. I also thought come hell or high water I would keep him home until the bitter end. I survived the hell, but am drowning in the water.. so I find I can't do this much longer either. I do feel I lost the war. I feel I failed "my Lynn" as well. I wish I could have save him, saved us, saved me. *sigh
Oh, Nikki, you didn't fail "your Lynn." Your Lynn has been gone for a long time. You've done the very best job you possibly could to take care of the shell he left behind, in the deathgrip of AD. Give yourself a very big hug, and know that we are all supporting you.
We've been on Abilify (2.5 mg twice a day). We've now been given Seroquel (25mg) to use at bedtime if we're having a bad day. Mayo said (I think) that they start to be concerned about the "black box" effects of Seroquel at about 200-250 mg./day. I'm starting to feel more like a research scientist and less of a caregiver. Ha!
Nikki, you never failed "your Lynn" in the past, you haven't failed the shell that remains, and we all know that you won't fail the shell in the future. You've gone above and beyond, and even more than that, for the shell. It is very likely that a nursing home will be better for the shell, able to provide an environment that he needs as well as many hands to share in the caring for his physical needs.
But the jury is still out on whether you'll fail "your Lynn" now, by failing to save yourself.
Please don't. He would want you to be healthy and happy and whole.
Save yourself for "your Lynn" if you can't resolve to do it for yourself.
We all harbor the "shame" of our LO's physical abuse - God knows I have. They don't mean it and cannot control it, yet it doesn't mean that they have not almost killed us. Regarding Seroquel - it has allowed my DH to come home and live with me again. DH has FTD and impulsive and uncontrollable behaviors. Long story short after 4 months in various facilities and Celexa, Lexapro, Namenda, Aricept, Abilify, Ativan, Haldol , Depakote, Lunestra, Risperdal, Clonopin, Neurontin and Seorquel, the combo that finally worked to control his sundowning, aggressive behaviors has been 100 mg of neurotin 3x/day and 75ng seroquel 3/day and .25 mg of clonopin. He is not a "zombie", allows his to function, he has no aggitaion or "motorization" ( read pacing) and is able to live home with me which is the best place for him and me. Everyone is different - he was a zombie on a very little dose of Risperdol, a zombie on Depakote so Seroquel has been a lifesaver for us both.
I thought I would give you an update on DW's switch to Abilify. It has been very trying, Seroquel did a very good job of suppressing the AD related behaviors. DW is now very anxious, argumentive, antsy, doesn't sleep well at night and is generally in a lousy mood most of the time. I called the Neuro Doc today and asked about using some small doses of Seroquel. He said to double the morning dose of Abilify, it will take a while for it to take it's full effect. The info with the RX said it would take several weeks to realize the full effects of the medication. That extra dose of Abilify just raised the monthly cost of this medication to $ 2,000, I'm going to put on my suit of armor and continue the single dose in the AM for another week or so to give it time to take effect.
Has anyone else had any experience with the switch from Seroquel to Abilify?
Did you TELL Your doctor how much it costs? I truly don't think they KNOW!! My cardio guy sweetly recommends Lipitor - when I asked if I could switch to a generic he said, well sure, there's no real difference.. when a young gastro guy told me I could take Entocort to speed up resolution of my diarrhea quickly he said, the only problem is that it costs $400/month.. (actually with Plan D medicare it was $75) but you don't need to take it for more than a month or two. He was aware, but I'm sure my cardiologist was not.
The bone guy I took my husband to gave him Arthrotech... which costs the full tab, but is essentially free if you take its two components as separate pills.
At the very least, ask the doctor if he has "professional samples." I bet he does. Take all you can get if it seems to be working for your wife. I forget, Jimmy, how old you are.
We're still on Abilify 2.5 mg twice a day and Seroquel 25mg at bedtime. Your DW's behaviors sound exactly like my DWs. How old is your wife? I imagine the next step for my DW is to start increasing the dosage until we find a level that works. She has a bad cardiovascular history so we have to be concerned about the "black box" effects.
I'm assuming that the reason your DW was taken off of Seroquel was due to concern over the "black box" warnings and her rise in BP ??
She was taken off of the Seroquel because of fluctuating blood pressure, from extreme lows to extreme highs. She is 75, I'm 68. I am younger and still work, I do have very good medical and RX coverage as long as I work. I do try to look at the total cost of the medications so I don't take for granted that they only cost $10, $20 or $40. I was planning on retiring later on this year, but I am now having second thoughts about it simply because of RX and Health Care costs. Some additional responsibilities have been added to my job description in the last week or so. At this time I am happy they still need my services and don't want to close the door on any employment changes in this economy.
I know the addition of 25mg of Seroquel works, when added to the Abilify, because I tried it to see if it would help her sleep at night. It does. But the Neuro Doc is telling me not to use so I will have to tough it through this until the Abilify kicks in.
I will tell the Doc how much the Abilify costs, professional samples are great, I have told the Docs to give them to somebody who really needs the assistance. I don't have any problem paying for the RX's at the present time but that could change. When that time comes I won't hesitate to ask for samples.
I am in the process of trying to determine what my Plan D costs would be as part of my retirement planning process. I did sign up at the medicare.gov site to try to get a handle on the situation.
Briegull, Pravachol is good generic substitute for Lipitor, you can get a 90 day supply a couple of places for $10.00. Some Docs seem to totally hung up on Lipitor.
I get three months worth at a time of the Tier 1 generics, including pravastatin - FREE at Prescription Solutions, which is what my AARP Plan D suggests if you want a mail-order druggist. The Tier 2 ones are $75/3 months. I pay $408/person/year.
My DH is on 75mg of Seroquel 3x/day and a months supply (with a company drug plan) is $600/month. he was on Abilify for 2 weeks but they took him off. I have no idea about it's cost.
Seroquel is a Tier 2 drug. SO $75 under Medicare Part D.
I assume y'all know that if you are concerned about costs, you ask the doctor what the maximum dose is, and have him prescribe that; it's the same cost per month no matter what the dosage, so you can then spread 1 month out over 3 for the same price.
I can only catch up with you guys every few days, but, it sure does help me to read your posts. I wrote above about the meds my wife takes and the good results from them. I know that they are dangerous and not good for long term use, but, with this disease, I finally learned (the hard way) that you do what you have to do. Something I didn't say, because I feel guilty even doing it, is that we have Atavan that I can and do use on occasion. When she is having a bad, bad, day and is verbally abusive and agitated, I give her half of a tablet. It makes her sleep, but, that is good.
2ndtimearound, none of us can make it to/through the long term unless we survive the short term. Ativan seems to be fairly commonly prescribed for agitation in AD. There's nothing to feel guilty about at all.
2ndtimearound, great that Ativan works. I have clonopin as a PRN and fortunately I haven't had to use it since he's been back home with adjusted med routine. Sometimes you just need a little extra help for those bad days; do not feel guilty.