Anyone else’s LO seem to get worse after starting seroquel?

tigersmom

DH got his first dose of seroquel Monday night. The geripsych originally prescribed 25 mg twice a day, to be increased to 50 mg twice a day on day 5. He fell asleep immediately after I gave him the first dose at 8 pm, along with his donepezil. Gave second does Tuesday at 6 am and took him to day care, where they said he was noticeably calmer and more pleasant. Last night he had a complete meltdown at 6 pm that had me running for the pill bottle. Shouting, insulting me, name calling, exit seeking, yelling that he would not eat what I was preparing for dinner. An hour or so later he calmed down. Woke up in a foul mood this morning, gave him another pill. Came home from a walk outdoors 20 minutes ago (his favorite thing) and he started yelling and tearing off his clothes because he was too hot. He seems to understand me even less well than he did three days ago. My heart is sinking because I had so much hope. Is this drug not working, has it not kicked in yet, or does he need that higher dose? His worst time of day is 4-6 pm. Am I giving it at the wrong times? Would really appreciate hearing what others have experienced.

M1

Definitely call the good doc. Adverse reactions do happen to all meds unfortunately. May be a little too soon know for sure, but he may have you hold a dose and/or halve it before giving up...so sorry, don't give up.

mrsabaldwin

Just started Seroquel a couple of weeks ago. Mom does ok on it. I actually think she needs a stronger dose which I will let the doc know. However, it is the Aricept or Donepezil that seems to set her off. Doc had me increase her dose and it was as if she never got the Seroquel. Wow! I stopped giving her the Donepezil and she's back to being more settled. I will of course address the doctor about all this but it in my mom's case it seems to be the opposite than your DH. Seroquel calms her and Donepezil makes her very active and very vocal.

Kat63

I just started my DH on Seroquel a week ago Monday. I give him Trazodone in the afternoon for sundowners agitation and the Seroquel to help him sleep better at night. My experience was similar to yours the first week. My husband seemed worse during the day and constantly just wanted to “go home” and see his parents (of course both have died). I thought the Seroquel might have been a mistake, but because I have seen so many positive remarks about it on this site, and after discussing it with my daughter, I decided to give it at least a full week. Well glad I did as his agitation has mellowed out and he is sleeping better. This is how it has worked for my DH so maybe just give it just a little more time.

Dio

I don't know what each of your LOs is suffering from—AD, LBD, VD, or FTD. I think we all want medications to work immediately, but they don't, on top of the fact that each person reacts differently makes finding the right mix so difficult. DH was on low dose seroquel which seemed to work for a couple months then not. Replaced with Ativan/lorazepam which seemed to work and then not. Added Exelon/Rivastigmine which seemed to work and then not; Switched to Aricept/Donepezil but didn't see much difference. Then night terrors started and scaled back on the donepezil. Then weaned off of Ativan and returned to higher dosage seroquel. But agitation and aggression increased over time where he started punching and kicking MCF staff. So upped dosage of seoquel plus added Depakote (aka sprinkles) and after two months DH started to improve. Six months later, DH is almost as if he never had the LBD disease. Short and long term memory in tact. Thinks he's cured and wants to leave the facility to come home. He's on combo of seroquel, donepezil and Depakote. I haven't come across another case like his—it's unheard of, that LBD patient regressed to normal and lasting this long. I'm more than befuddled.

tigersmom

Thanks, everyone. Here is a brief update. After a good day Wednesday and a really bad day Thursday, I finally called the doc. He said that what I’m seeing is his behavior, not the meds. His starting dose was very low; for comparison, he said a healthy 40-year- old would be at 300 mg daily. He also said it would take a minimum of two weeks to see any effect, usually longer, and that the goal was not to disappear the behaviors completely, but lessen them. He also said some people see no effect. So we’re going up to 50 mg morning and afternoon today. Learning something new every day, but I am already so tired.

M1

I’m not sure that I entirely agree with what he’s saying, but here’s hoping the increase helps. I would continue to nitrate up quickly if you can.

tigersmom

Well, M1, I think you were right. After struggling for a month with this drug, we have bailed on it and are moving on to risperidone. Seroquel (50mg twice a day) made DH incredibly sleepy, more confused, unsteady on his feet and constipated. I observed both shuffling gait and a fall on this drug — and the best thing about my DH prior to this was how physically fit he was. He began to fight with me about showering. The only benefit was a slight lessening of the anger duration during his outbursts. The geripsych thinks we have given it a good try at one month’s duration, so we’re moving on. He was originally going to try abilify first,but then decided to go with risperidone. We are starting him low, 25 mg a day, and going slow. The whole experience scared the daylights out of me. I felt so bad giving him that drug once I began to feel it was hurting him, not helping. I felt like I was watching him slide into stage six before my eyes.

M1

Sorry to hear this, hope he does better on the risperidone. So much of this is still trial and error.....

Dio

Sorry you're going through this. My husband went back and forth on seroquel. It worked at first but then stopped working. But now he's back on it and at a much higher dosage. However, it alone didn't do wonders and works well in conjunction with other meds. Hope you find the right combination. As M1 said, it's trial and error.

midge333

I hope they can find a drug combination that works for your DH. Remember that "more confused, unsteady on his feet" could also be caused by progression of his dementia. Good luck!

​fesk

tigersmom - I'm sorry you are dealing with this.

I am glad you are going with a low and slow approach. I have to be honest, I didn't like the doctor's comment about a healthy 40 year old being on 300mg. Each person is different. My mother is extremely sensitive to medicine and cannot approach the usual doses most people take. Seroquel sent her into delirium in a week. The meds can cause her to be unsteady, stop standing, sleep too much, and have various other side effects. It makes me a nervous wreck every time she needs a med adjustment or change.

Follow your instincts. Track the effects of the med and, if something doesn't seem right to you, speak up to the doctor.

Best of luck and keep us posted.

tigersmom

Big thanks to everyone who came back to comment. We are just on day 4 of the risperidone, but it does not seem to sedate him like the seroquel did, and his balance and gait are back to normal. He’s still more confused and still resisting showering, but not as strenuously. I’ll take it. The anger seems to have dissipated quite a bit, too. Moving forward with my fingers crossed. I really appreciate the insights and support I find here. You guys are priceless.

midge333

Sounds like a win!

​fesk

Very glad to hear that, tigersmom.