Donepezil withdrawal - anxiety/ADD?

Quilting brings calm

Mom’s neurology NP is weaning her off of Donepezil due to the bowel issues it caused. Mom was extremely bothered by the bowel issues and the resulting clean up needs. Originally mom was on the 5mg level for several months and then raised to the 10 mg level a few months ago. The NP considered the 10 mg the therapeutic level. The bowel issues increased significantly at that level. However I think they were slightly present at the 5 mg level too. So we are weaning mom off by steps - first down to 5mg and then off.

She started the lower dosage about a week ago. I saw her yesterday and her anxiety level was through the roof (even with her sertraline and mirtrazipine). She also seemed unable to focus on one thing for more than a minute or two. I had brought their groceries. Dad told her to leave the non-cold items in the bags till later and to visit with me because she’d been asking for me. However she kept getting up to put the groceries away multiple times. It was hard to deal with, especially since her mobility is limited and she was leaning over and holding into the table while standing. It’s a typical AL apartment kitchen - everything in reach or a step or two.

Has anyone here seen a similar issue when weaning their LO off donepizel? How long did the issues last? Mom’s at stage 4 if that matters to your answer.

harshedbuzz

@Quilting brings calm

I would call and report this to the NP.

It could be that your mom was one of those folks for whom donepezil is effective at improving function day-to-day and that what you are seeing now is her new baseline without the medication.

I wonder if she'd benefit from/tolerate a different medication. Perhaps the Excelon Patch might work and be OK for her.

With my dad, we did increase his SSRI in stage 5 as he became more confused and anxious; maybe an increase in the sertraline would dial back her anxiety.

HB

SDianeL

Agree with HB that you could be seeing her baseline without meds. My DH is Stage 5 going into 6 and has OCD when it comes to putting things away and rearranging things. He rearranges everything in the refrigerator and pantry sometimes multiple times a day depending on his level of anxiety. Asking him to not do something never works. I just end up helping him or watching him closely so he doesn't get hurt. Maybe there is another medication that will work.

Quilting brings calm

@harshedbuzz

She was on the rivastegmine( generic Exelon) patch a few years ago, and the Humana Premier Medicare part D insurance quit paying for it. It wasn’t doing anything for her anyway. She wasn’t like this when she was on the 5mg Donepezil the first time. We only increased it because the NP said it wasn’t the therapeutic dosage. Of course I can’t get the NP to even admit she’s in stage 4. She keeps insisting it’s MCI because of her MMSE test scores

I think you and @SDianeL are correct that this is her current baseline - she’s probably progressed on the one way dementia path since her original 5mg Donepizel dosage. It’s been 4 years next month since we moved them into the AL and it has seemed like she’s stayed at stage 4 the entire time - which is longer than average.

You might remember ( or not) that we had a rough time with her anxiety and depression until we landed on the sertraline and mirtrazipine combo. The minute by minute change in activity is new.

The sertraline was increased about 3 months ago- the psych resident’s ( teaching hospital) request, not mine. I had thought her anxiety and depression was doing ok.

I did call her PCP about something to take on her next monthly visit to her eye doctor for her wet macular degeneration shot - her first two shots have not gone well because she jumped when the needle went in. The eye doctor has already said he will refuse to do the shot if she keeps jumping as it’s too dangerous. PCP ordered Xanax for the visit days. I thought about having the AL give her one of the Xanax yesterday but can’t risk her being out of them on shot day. I don’t know how many he ordered as the prescription went straight to the pharmacy and the AL nurse - her medications are managed by the AL.

I will call the psych resident on Monday and see if they want to increase the sertraline. She just got moved from a six week visit schedule to a three month visit schedule two months ago. So she’s not due to go again until mid November.

I had a talk with the AL nurse yesterday and they are monitoring her too.

Thank you both for your response. I has been thinking that the donepizel wouldn’t have an affect on anything except memory and confusion. So I was surprised by what I saw yesterday.

Iris L.

I tried generic rivastigmine patches but the patches didn't stay on for more than a few hours. So I am back on brand name Exelon patch, and doing well, no g-i issues.

Iris

harshedbuzz

@Quilting brings calm

I would absolutely test drive the Xanax before the day of the ocular injection just to make sure she isn't going to be some sort of paradoxical reaction and that it brings some calm to the party.

Mom starts ocular injections next month; she has dry AMD with severe geographic atrophy and they just recently approved a medication. When the doctor suggested the medication in the spring, he said that Aetna Medicaid did not approve the drug yet. Mom is a retired teacher and has medical coverage that rivals that of a U.S. Senator so this seemed odd.

When we got home, I called the number on the back of her MAP card. The rep told me that mom's Part D is through a different company and connected me to them. The woman looked up the medication.

C/S rep: "It's covered but she'll need a pre-authorization and then you can pick it up at your retail pharmacy".

HB: "and then we'd bring it to the doctor's office for the injection".

C/S rep: "No, the expectation is that if you obtain the medication at the retail pharmacy it is self-administered".

HB: "Wait, what? The woman can't be trusted with an eyebrow pencil, no way she's injecting her own eyes and I'll pass out".

Turns out it was entered into the system improperly-- the doc will order it from the specialty pharmacy and do the injection. But we all had a good laugh after.

HB

Quilting brings calm

@harshedbuzz

she’s had Xanax before. They weaned her off of it when they put her on sertraline. My step-dad is going to come to the shot appointment this time and his presence might be enough to keep her still. I don’t normally bring him to her doctor appointments because I don’t like dealing with him ( and transporting them together) when I don’t have to. But in this case he might get her to stay still better than I can. She really needs someone to stand right next to her and put one hand on her hands and one hand on her shoulder. If the doctor will allow it.

calmmorn

Quilting, we had a similar experience with donepezil. Mom started at 5mg and seemed to be tolerating it well. After several months, the NP titrated it up to 10mg. Almost immediately, there was a sudden cluster of new behaviors: increased confusion/pacing/restlessness, spitting, slapping, burping. Mom didn’t show obvious GI issues, but I think some of the new behaviors were due to underlying physical discomfort.

After about 3-4 weeks, I asked the NP if we should stay at this new dosage to see if the side effects abate, but we decided to titrate her back to 5mg. Soon after we reduced the dosage, mom mostly returned to the pre-titration baseline. Mom’s cognitive decline was pretty slow and steady before the increased dosage and returned to being slow and steady after, so in our case, I do think it was medication related.

Mom is still on 5mg. At this point, I think it is purely placebo effect. With these memory drugs, it is next to impossible to know if they are really doing anything. Mom’s NP told me that she has had patients who stayed on donepezil until he very end. She said that in a joking tone, not as a recommendation.

I agree with the other folks here that the behaviors you witnessed could be the new normal. This was just our experience.

I get a little confused by the different staging models, but my mom is early/mid stage 5 on the Tam Cummings one.

I know how hard these decisions are. I am sending you lots of strength and support.

Quilting brings calm

I called both the psych resident and the neurology NP Monday.( yesterday). Mom called later that day still confused, said she ‘ felt like she was trying to catch up to herself’. I haven’t heard back from either medical office …but today I called Mom and she sounded perfectly fine. Knew exactly what was going on and had a perfectly normal conversation about her day and my step-dads health. It’s a roller coaster.