DH and I recently visited pysch for follow-up to make sure meds were working. While there the dr asked me if I was aware of the "black box" warnings and the potential dangers in using the drug on people with dementia. I told him yes, I was aware, and asked him would the potential catastrophic events occur in a patient who is not elderly (DH is 59). He said yes; so I asked him what other drug threapy recommendations he had. He was evasive and said it would be trial and error (no joke, DH spent 120 days in psych hospitals trying to get it right) but there were other potential drug combinations which could be as effective without the potential side effects. When I told him all the other meds which were tried, he said there were still more that could be tried. I left telling him that at this point the Seroquel has been very effective in managing DH's rages and aggression and that unless he could be more specific on "the other medications" that for now we would continue with Seroquel. DH is healthy with no apparent medical problems, but his pulse has become very rapid (124) so we have a dr's appointment to check this out. Anyone else have similar discussions with doctors and LO having rapid pulse on Seroquel?
My husband took Seroquel for about 3 months - it gave him high blood pressure, swollen ankles and wrists, and high blood sugar. We took him off it and everything went right back down. There was a class action lawsuit against it for causing diabetes. It helped with the problems he took it for, but at that time we decided it wasn't worth the side effects. Maybe someday it will be worth it though.
I am a new member (not officially as yet) on this most interesting website that I just found. Actually, LFL's comments seem to parallel my husband's situation. He is on a strong dose of Seroquel which has stabilized him now for three months. I too was warned of the black box, but we decided there was nothing else to try. I have not been told of any side effects as yet but will check on that. He is in a psych hospital since January and am waiting for a bed in a care center (another story!). LFL, I saw your home location of Flemington, and this is where he is. I hope we can get together on e-mail or whatever you suggest, to talk more. I so much need support!
My husband is on a low dose of seroquel for the past 3 months and it has helped him calm down a bit. So far he has had no side effects from the med. He is in good health other that the FTD. He is 59.
HLK -- you're "official" as far as we are concerned! Welcome to Joan's wonderful site. Am guessing you were a "lurker" first as most of us were. Stay and chat with the rest of us. Joan will come along soon and give you a formal welcome. Support, support, coming your way. Check out the rope topic also. It's available to anybody needing help to keep from falling into the abyss that threatens us all. Big hugs to you.
deb112958, what is a low dose? Looks like we're on parallel paths - DH is 59,good health with FTD. DH was very physically abusive and agitated .before seroquel.
HLK, welcome to Joan's wonderful site - I've found it so helpful when I was in the depths of dealing with the diagnosis, hospitals, DH, etc. I couldn't have made it this far without it. Of course we should email - I'll post contact info. Sorry you're on this journey but perhaps a little "local" suuport will augment the great support we get here.
LFL, my husband takes 25mg in the morning and 25mg at night. I have on ocassion (with doctor's permission) given him a third pill during the day. This is usually if we are going out or have people coming over. Otherwise he is incredibly antsy. This dose does not zonk him out at all. He used to be a big napper....not anymore. Even the seroquel doesn't make him drowsy.
Seroquel is very flexible, many doctors will start at the 12.5 MG dose, 50 MG's a day is not a large dose. Even small doses of Seroquel will help calme many of these behaviors and anxieties.
My DW can no longer take Seroquel and now takes Abilify. Those of you who have bought prescriprtions of Abilify know that Seroquel is very cost effective when compared to other drugs such as Abilify.
when we put my DH on seroquel to try for aggitation in the begiinng yrs the black box warnings were also of concerns. due to high blood sugars from it as well, we switched to zyprexa another black box. at the time it was a black box drug (almost all of them are at this point that really will work) as well and the question was do you give it at home and in a watchful mode for unwanted side effects? or do you place them and let the facility GIVE it to them n a medical surrounding? didn make sense that they are going to give it or some other black boxt drug ANYWAY. they are not about to bring in an aggressive patient and not subdue them with drugs for safety issues. i also thought tht under the circumstances and the ultimate fatality of AD what is there really to lose other than a possible early demise from a drug that has a black box or have them stay off all workable meds and allow them to succumb to the end stage AD? i sort of believe that criteria is what a doctor is suggesting when they say we 'weigh the benefits' of using them. both choices are not the most desirable-but we do with is the best for our own situation-divvi
Welcome to my website. I see that my directions for signing on were successful. I know I said some of this in the e-mail, but I want to make sure you get all of the information in your "welcome packet", so here it is.
You have come to a place of comfort for spouses who are trying to cope with the Alzheimer's/dementia of their husband/wife. The issues we face in dealing with a spouse with this disease are so different from the issues faced by children and grandchildren caregivers. We discuss all of those issues here - loss of intimacy; social contact; conversation; anger; resentment; stress; and pain of living with the stranger that Alzheimer's Disease has put in place of our beloved spouse.
The message boards are only part of this website. Please be sure to log onto the home page - www.thealzheimerspouse.com - and read all of the resources on the left side. I recommend starting with "Newly Diagnosed/New Member" and "Understanding the Dementia Experience". There are 3 sections for EOAD members - two of which focus on the young teens whose parents have EOAD (early onset AD). Do not miss the "previous blog" section. It is there you will find a huge array of topics with which you can relate. Log onto the home page daily for new blogs; news updates; important information. There is a new section on informational videos that is very educational and informative.
Currently, the message boards and all of the resources can be accessed for free, but due to the high cost of maintaining the website, anyone who is able to make a payment in any amount to help defray the costs may do so by clicking on the "sticky topic" - "Payments to this website". Any purchases made through the Amazon links and Zazzle Marketplace also help keep this site up and running. Thank you.
My husband (64) has been on Seroquel for a couple of years. The only side effect was a 10 lb. weight gain in the middle. His appetite is about the same, activity level the same, so it must have to do with the chemical makeup of the drug. He was started at a lower dosage and is now up to 150mg a day. I think it has smoothed out the edges when he gets upset--less of a rage now, more of a normal person's reaction.
Welcome HLK, you will find yourself hugged into the fold, very quickly and easily. This is the most amazing group of caregivers. Seroquel works exceptionally well for my DH at 100 mg am and pm. No nasty side effects. It allowed him to stay at home. Two months ago, We almost had to place him because of his anger, primarilly aimed at our 9 yr old grandson who we are raising. Dementia is a very individualized disease. You never know which med will have which side effect. What is your DH's dx.?
I do not intend to make light of the Seroquel "black box" warning.. but it has been such a lifesaver to me. It totally works with my DH..and the difference was night and day. What was the National Rifle Association's mantra...something like You'll have to pry my gun out of my cold hard fingers after I die..." Waaay off the quote....but sometimes I feel that way about his Seroquel!!! I know... this is not making a lot of sense...I have no excuse.
My husband isn't on any of these drugs, but if I needed to I'd put him on them black box or no black box. In many cases it is the difference between being able to keep them at home or a nursing home. In many cases if they land in a nursing home they will be put on the drug anyway, or on something even worse, or will be sent to the hospital where they start in most cases by knocking them out and then lowering the amount of drugs until they hit a level where the patient is no longer a threat to the people around them.
The thing that we all need to understand when doctors tell us about block box warning, is that ALL DEMENTIAS ARE FATAL. I wouldn't use one of those drugs unless I needed to, but if one of us needs to use the drug frequently there is nothing else we can do.
Stella is so right. LISTEN UP everyone. We get all wrapped up in the warnings and worry that in a few years he could develop diabetes, or something worse...and, in my case, my dear husband is 82 freakin' years old! What is the most important?? Making his life comfortable NOW and giving him something that will quell his rages toward me??... or live through that and hope that in 5 years he'll be..........uh............"better?? since he won't have developed diabetes??" We take life day by day as caregivers...and I am treating him day by day with makes him be comfortable.
In the United States, a black box warning (also sometimes called a black label warning or boxed warning[1]) is a type of warning that appears on the package insert for prescription drugs that may cause serious adverse effects. It is so named for the black border that usually surrounds the text of the warning.
A black box warning means that medical studies indicate that the drug carries a significant risk of serious or even life-threatening adverse effects. The U.S. Food and Drug Administration (FDA) can require a pharmaceutical company to place a black box warning on the labeling of a prescription drug, or in literature describing it. It is the strongest warning that the FDA requires
Important Safety Information for Seroquel XR This is not a complete summary of safety information. Please discuss the full Prescribing Information with your health care provider.
Seroquel XR is a once-daily tablet approved to treat acute depressive episodes in bipolar disorder; acute manic or mixed episodes in bipolar disorder alone or when added to lithium or divalproex; long-term maintenance of bipolar disorder when added to lithium or divalproex; and schizophrenia.
Elderly patients with dementia-related psychosis (having lost touch with reality due to confusion and memory loss) treated with this type of medicine are at an increased risk of death, compared to placebo (sugar pill). Seroquel XR is not approved for treating these patients.
Antidepressants have increased the risk of suicidal thoughts and actions in some children, teenagers, and young adults. Patients of all ages starting treatment should be watched closely for worsening of depression, suicidal thoughts or actions, unusual changes in behavior, agitation, and irritability. Families and caregivers should watch patients daily and report these symptoms immediately to the physician. Seroquel XR is not approved for patients under the age of 18 years.
High blood sugar and diabetes have been reported with Seroquel XR and medicines like it. If you have diabetes or risk factors such as obesity or a family history of diabetes, ask your doctor about checking your blood sugar before starting Seroquel XR and regularly throughout treatment. If you develop symptoms of high blood sugar or diabetes, such as excessive thirst or hunger, increased urination, or weakness, contact your doctor. Complications from diabetes can be serious and even life threatening Increases in cholesterol and triglycerides, and weight gain have been reported with Seroquel XR A rare, but potentially fatal, side effect reported with SEROQUEL XR and medicines like it is neuroleptic malignant syndrome (NMS). Tell your doctor if you have very high fever; rigid muscles; shaking; confusion; sweating; changes in pulse, heart rate, or blood pressure; or muscle pain and weakness because treatment should be stopped if you have NMS Another serious side effect reported with Seroquel XR and medicines like it is tardive dyskinesia (TD)—uncontrollable movements of the face, tongue, or other parts of the body. TD may become permanent, and the risk of TD is believed to increase as the length of time on and the amount of these medications increase. While TD can develop in patients taking low doses for short periods, this is much less common. There is no known treatment for TD, but it may go away partially or completely if treatment is stopped Before starting treatment, tell your doctor if you have high prolactin levels or have a history of, or are at risk for, seizures or a low white blood cell (WBC) count. An eye exam for cataracts is recommended at the beginning of treatment and every 6 months thereafter. During treatment, tell your doctor if you feel dizzy or lightheaded upon standing. Suicidal thoughts or actions may occur; tell your doctor if you have thoughts about death or suicide. Since drowsiness has been reported with Seroquel XR, you should not participate in activities such as driving or operating machinery until you know that you can do so safely. Avoid drinking alcohol while taking Seroquel XR because Seroquel XR increases the effects of alcohol. Avoid becoming overheated or dehydrated while taking Seroquel XR Common side effects: The most common side
The information I got with the drug stated that the more serious side effects could be stroke, heart failure in elderly patients with dementia. The other side effects were constipation, drowsiness, dizziness, headache, stomach pain/upset, tiredness, weight gain, nasal congestion or dry moth. Some of the other serious side effects would be fainting, unusually fast/irregular heartbeat, signs of infection, difficulty swallowing, weakness, swelling arms/legs/feet, seizures, vision changes and unusual/uncontrolled movements.
deb thanks for the more complete list of side effects. The main one, that dementia patients might die on the drug, always made me giggle a bit histerically.
Just how do they tell if they died because of dementia or because of the drug? Now, the stroke and heart failure, is a bit clearer. Of course, if what they actually have is cardiovascular dementia with or without Alzheimer's, they are probably going to die from a stroke or heart failure anyway. From what I've read that is the way most cardiovascular dementia patients die because the dementia is a side effect of heart disease and multiple strokes in most cases.
Frankly, if the whole thing is that the elderly dementia patients dies in under 5 years if they took the drug, just how long does an ELDERLY dementia patient live after they arrive at the agitated, violent stage of the disease if they aren't taking the drug? And how many die as a result of being agitated and violent without the drug? And how fast?
There are times when I wish Synshine was still with us.
My husband take 50 mg Seroquel in the am and 100 mg at night, have also been told that he can have an extra 50 mg mid day if agitation is severe. Black box be darned. This is the ONLY drug that has helped him in any way and anyone who tries to tell me to stop it will have a fight on their hands. He has been on it for over a year and no noticeable side effects.
If you read up on galantamine you find that it has the deadly side effect of causing sudden heart attacks. Does this stop usage? When there are no better options, NO.
My husband has a heart condition and high blood pressure. He has been on galantamine for 5 or 6 years. It hasn't seemed to hurt him, just the opposite. He also is taking seroquel. For a while he was taking it 4 times a day. His agression is so much better now that I'm only giving it 2x a day with the option of 3x if needed. If it had not been for the seroquel I most likely would not have him at home with me right now.
My husband has no mood-controlling medication as yet and I would really like to have something, at least on hand. He really suffers from agitation almost daily, and it often results in anger towards me. So far this has not become really violent or dangerous and I have been able to deal with it. Who do I see about the seroquel or whatever: the GP or the neurologist who prescribes his Exelon?
JeanetteinHolland--in our case, my DH's neuro deals with the meds for his dementia and psych issues. His PCP (primary Care Physician) takes care of his other issues (Proscar for enlarged prostate, a statin for cholesterol, etc.) Each has a complete list which I update and bring to each appointment with either. I keep the list in my computer and a current copy in the "In Case Of Emergency" packet on the refridgerator door. If, as in the past, he has to go to the hospital by ambulance, the EMT's know to look for and take the packet contents with them. There are meds to help your DH with the agitation. He will feel better when that's under control, the anger will also be under control and the med will thus be helping prevent or avoid the anger getting out of hand. All of which will make your job easier and give you a bit more peace of mind.
My DH has been on Seroquel for a year. His dementia, movement disorder, stiffness, etc. all existed before he went on Seroquel. In Dec. 2007, they put my DH on 4 mg of Risperdal (among other things) because he had a psychotic break (completely lost touch with reality - not oriented to time, place, or person ... including me). The Risperdal made my husband a zombie ("flat" is the medical term) so the psychiatrist migrated my DH from Risperdal to Seroquel. At one time, my DH was on 900 mg of Seroquel XR (yes, 900 mg), but it took that much for him to stop hearing voices and the voices disturbed him a lot. He is now on 300 mg of Seroquel. The voices may have been connected to Requip. He didn't start hearing or seeing things until after he had been on the Requip for 6 months so I question the connection, but he has not heard any voices at all since he has been on the Seroquel and off the Requip. So ... I don't know if the Seroquel is absolutely necessary now. At the same time, I am not sure my DH is telling me about all of the things he sees and hears. For example, in a store the other day, he looked in a direction where there weren't any people and waived. When I asked him about it, he denied having waived at anyone and claimed that his arm just moved, but I am not convinced.
He has recently had increased liver enzymes. We have taken him off of Vytorin and a lot of supplements (including fish oil). The neurologist thinks they may have been stressing his liver. We will see what happens.
As far as the black box warning, the question I have to ask is what is worse ... the black box or the LO without the meds? We all know where this is headed for our loved ones. Let's face it, they are going to die. It doesn't seem to me that it matters much if it is the black box or the dementia; in fact, the black box might be more merciful. Who the heck knows any way? Black boxes are just that ... an unknown possible adverse effect. Isn't that what we are living daily? So, since we're in the darn black box, we might as well make our LO's lives as good as possible while we can. That, and remember that God is with us here in this black box and wherever we go.
I began the Black Box warning discussion a long time ago. With a terminal illness quality of life is needed for the care giver, too. Drugs like Seroquel give it to us.
We have all been through hell and back when it comes to behaviorial problems with our loved one. The balance between them is what is critical. My dh has been on seroquel for years and was on risperdal for many as well. He has ptsd as well as hallucinations. All that agitation and screaming and thinking people were trying to kill him was more stressful than worrying about the side effects. Of course, we worked closely with his dr to tweek the amount so that he wasn't over medicated. He was able to walk and visit his "friends" at McDonalds and somewhat participate in life. I am better able to "handle " him with the proper amount of seroquel (and his other meds as well). I am more concerned with his ability to have some what of a stable life without all that agitation. I do have a question for anyone that might have some imput. Dh is on the same schedule of meds in the nh that I had him on at home. He was more physically active at home. At the nh, he is mainly in a wheelchair yet he fights them terribly when he needs personal care. He will lash out at them and I'm afraid he will hurt someone. It takes 2 of them to change him and washing his face is nearly impossible. Shaving is now done by electric razor but I know he is a tremendous challenge. Has anyone else experienced this and if so, what did you do about it?
Are you absolutely certain he is getting the same medication there? I woud be concerned that perhaps he was being 'over medicated' on something and the balance that worked before isn't there anymore. I've not had personal experience in this area, but some places have been known to "overmedicate". Never understood where they got the authority to do that.
No. He is being medicated according to drs orders. He is quite "happy" other than the personal need attention. I have witnessed the changing and he also gave me the same hard time when I had him home. They are quite "gentle" and really talk calmly to him. He is just so against having anyone do things for him that he fights them. That is the problem.
My husband is being given slightly less Seroquel in the nursing home. At home he was taking 50 mg in the am and 100 mg at bedtime with the ok from the doctor to give him 50 mg mid-day if needed. I tried to hold the 50 mg mid day as often as possible to avoid over medication but he did have it a lot of days. At the nursing home they are giving him 25 mg mid day every day. The fact that they are giving it all the time might be the difference. He is more quiet (except for sundowning) and there doesn't seem to be anything that will change that). They tell me that even though he does not take redirection well (tell me about it) that he does not fight them when it comes to his personal care, but he will still fight me if I try.
Seroquel has been Lynn's godsend. WIth it I was able to keep him home another year. AS for the black box, pfffffft. I am with starling, some of these warnings crack me up. Compared to a sugar pill.. well hello! What wouldn't be an increased risk compared to that! Ticked me off when his VA doctor tried to make me feel badly for insisting he stay on it. Unless you have lived it, don't judge me doc. ...K off my soap box
I always find it interesting when reading results of med studies - there are a percentage of people on the placebo that have the same side effects that people on the test drug had! Galantamine gives the warning that it is known to cause sudden heart attacks. Well, if it does with hb, let it be fatal and that would be better than what lies ahead. Since we have walked it with his dad, he knows.
This info about Seroquel has helped quell the fear I have of it. My LO is now staying awake all night most nights. He is cleaning things in our laundry washtubs, things such as keys, scissors, etc. Filling the sinks with water to clean them. My water bill is sky high because of this. Would the Seroquel help with these things the way it helps control rage and aggression? Although I could live with those things if he didn't get so aggressive.
If the doctors ever decided to stop my husband's Seroquel, they would have to pry the bottle out of my cold dead hands. Stupid Black Box is just a C.Y.A. for the drug companies. Aspirin has a black box. Most of us have given "off label" drugs and/or dosages to our spouses, because the doctors knew it was ok. Yeah Nikki..PFFFFFT to the black box warnings.
MEEMABEV, your husband is demonstrating 'anxiety'..and would benefit more from Lorazepam (Ativan) to settle him down. I had an RN here less than 2 hours ago who told me that very thing. I was not giving DH his Ativan..and gave him Tamazapam instead to put him to sleep when he was up all night. She said that if they are suffering from Anxiety or Sundowning, sleeping pills will not calm them because he has thoughts racing through his head so fast he cannot sleep. If you have not asked the doctor for this, perhaps you could and see if it helps. The nurse gave my husband his first one tonight before she left. The anxiety in the evenings is commonly called Sundowning and just busy work/buzzing/moving about/here there everywhere is - indeed - Sundowning/Anxiety.
If he's just washing things, let him. Don't worry about water bills. You're going to face med bills, etc, much higher. A behavior like that won't last. Get the seroquel or something (my husband takes trazadone) to quiet the sundowning. All of us here (someone, correct me if I'm wrong) believe in better living through pharmaceuticals in our cases - even though we might have been devout naturopaths earlier!
i am not a medical professional but obsessive compulsive disorders that accompany AD and sundowning are being treated with significant off-label improvements with seroquel. many members here give seroquel to their ADspouses with very good results. as with every individual each person should consult with thier dr to make sure any drugs used are compatible with other medications they may be taking. some drugs interact with others so its imperative a qualified medical dr be the one to ask which drug will benefit your spouses particular issues. almost all the anti-psychotic drugs used for AD have black box warnings but as caregivers we give them with our drs approval knowing there are some risks involved. unfortunately it seems these drugs are the only alternatives for use that have results. divvi
Meemabev I wish we could erect a statue to honor the inventer of drugs like seroquel. It has black box warnings of possible cardiac complications, but those of us with FTD spouses know that it is the only drug that works. FTD is like Alzheimer's on steroids. Don't be afraid-we are here to help you.
For what it is worth, I'll repeat that the RN said today that his sundowning could not be helped with Seroquel or his sleeping pills. Only an anti-anxiety pill. He takes the others and it's pretty darned obvious they weren't working. Nurse gave him an Ativan before she left, and he's been asleep since 8:45. He did fall down (almost) in the toilet room...but I managed to keep him more upright than lateral. (Picture him walking with knees almost entirely bent..like a penguin.. His knees are jello this week.. and this started before the new drugs).