Withdrawal of Aricept

[vdg]

I heard from Mum's care home today that the CPN had been to see Mum but that as before Mum was totally unco-operative.Recently the dementias have been obviously getting worse. The CPN has said they are to keep Mum on Aricept for the next 2 weeks and monitor her every move. mood etc then they are to stop the Aricept for two weeks and monitor her during that time to see what if anything is the difference.
If there is no difference they won't put her back on it, if things are worse they will resume it.

I am a bit worried about them stopping it suddenly.She's been on it for about 4 years.Should it be weaned away gradually? Does anyone have any experience of this?

 

[Pheath]

We once, very irresponsibly took it upon ourselves as a family to stop dad’s Aricept just as an experiment for a few days some years ago to see what difference it would make and he got worse quickly, most noticeably his walking became very poor. As soon as we started it again he improved. However he’s recently moved to a care home and his behaviour got very challenging and aggressive. The psychiatrist also suggested maybe stopping the Aricept as an option and when I queried it gave me a complex reason to do with the brain’s chemicals I couldn’t really understand. Anyhow it didn’t happen in the end which I’m glad about. If your mum has been at a memory clinic prior to going to the home you could always just double-check if stopping so suddenly is ok but hopefully she will be closely monitored so if she deteriorates in any way they can resume it immediately. Sorry i can't give more positive news about our experience, your mum might react completely differently.

 

[vdg]

Mum was signed off by the consultant at the memory clinic about 6 months after entering the home,which I was surprised by.That consultant is now no longer there either so I don't think anyone would know anything about her case.
I think the home will be very vigilant,it is a good home and they care for her well,so if she goes rapidly downhill she'd resume the drug straight away.

It would be good for her to have one less pill to take as it is difficult to get her to take her meds, so it would lessen the battle!
I'll let you know what happens...

 

[Pheath]

I'm glad the home will monitor her carefully and hope things get better. When we resumed dad on it he improved v quickly and there was no lasting damage done. Will be interested to hear how she gets on.

 

[tre]

My husband came off aricept after three and a half years. At the start it was definitely helpful but although I was really scared about a downturn when he came off this did not happen and he lost the hallucinations he had suffered for the last six months. I still do not understand how he was free of side effects for years and then suddenly they appeared.
Anyhow, I did not like the idea of no medication so I fought for him to have a try on Ebixa. He has been on this for six months and it does appear to be helping. Perhaps you could ask about this for your mum. I think NICE recommend it for Moderate to Severe AD when aricept is not suitable.
Good luck,
Tre

 

[Pheath]

Yes, I’d second what Tre says. Dad is also on Ebixa as his dementia is quite severe now and it’s helped a little taking the edge of his anxiety/ aggression which was particularly bad in the evenings. However the previous home he was at reduced his dose (due to the cost i suspect) so some of the symptoms have resurfaced so we’re pushing for the new home to increase it again. It is an expensive med and not always supplied on the NHS. He also still takes Aricept.

 

[vdg]

Thankyou for your replies.I shall ask about Ebixa.Will let you know what happens.
Viv

 

[susankell]

Hi, There is a recent article in the British Medical Journal on Therapeutics (12.5.12): Cholinesterase Inhibitors and memantine for symptomatic treatment of dementia. Basically, it shows that continuation of Aricept benefits patients even in the late stages of dementia. Unfortunately, however, their use in late stage remains outside current licence indications and guidance from NICE. However, I believe the AS is taking this up with NICE and would be inclined to mention this to the CPN and request your mum stays on the drug for the time being. My dad was taken off Exelon without titration and suffered severe withdrawal to the extent we had to call an emergency doctor to prescribe a sedative for him. I would certainly not allow him to be taken off again without the drug being titrated. He had been on the drug for 4 years also. There are both liquid and patch forms of these drugs that can be used if your mum is having difficulty swallowing tablets. Of course, they cost more and this is often the deciding factor it appears when taking people off the drugs. This should not be the case and it should depend on the individuals needs! Your CPN does appear to be monitoring it closely but having experienced what we did I would not want anyone to go through that. Again, discuss the above with your CPN and see what they say. Hope this helps, Sue

I heard from Mum's care home today that the CPN had been to see Mum but that as before Mum was totally unco-operative.Recently the dementias have been obviously getting worse. The CPN has said they are to keep Mum on Aricept for the next 2 weeks and monitor her every move. mood etc then they are to stop the Aricept for two weeks and monitor her during that time to see what if anything is the difference.
If there is no difference they won't put her back on it, if things are worse they will resume it.

I am a bit worried about them stopping it suddenly.She's been on it for about 4 years.Should it be weaned away gradually? Does anyone have any experience of this?

 

[vdg]

thank you Sue, I shall ask about this next time I am in. I visited today and although atm she is still on the drug she is considerably worse and has been wandering at night and not eating:-(

 

[vdg]

Update on this thread

I had my monthly one to one with the manager of Mum's home today.Mum has been off Aricept for about 10 days now and is doing well. No obvious changes in her behaviour except that to help the eating they now have her in the early eaters group which gives them more time to help her when needed and lets her have more time to eat at her own pace.They say she eats small portions but enjoys her food more now.
Still having trouble getting her to join in things, clean her teeth or take and meds.I suggested the tablets could be given on a spoon in some jam but apparently I have to give written permission for this as covert administration of drugs is not allowed without it.Guess I shall be writing a letter after posting this!

 

[Pheath]

Thanks for this update. I’m very interested in this subject as dad has recently come off Aricept as the psychiatrist felt it could be agitating his brain. I was quite against this decision as have had to fight over the years to keep in on it and know it helps with cognition, communication, motor skills etc. at all stages. It’s difficult to tell at present whether he’s better or worse (he’s only been off it 3 days) as they’ve increased his mood stabilising med, Ebixa at the same time but we’re closely monitoring and have been told they’ll resume it if they notice he deteriorates.