Ebixa

[suptowngirl]

Can anyone give me any information as to how long Ebixa takes to start working? My mom is now on her 3rd week of 10mg morning and night. Am I waiting for a miracle to happen? She doesn't seem to be any better at all, if anything she seems to be deteriorating. I had to plead, almost beg the consultant for the drug as mom was only scoring 14 on the day of her appointment ( he had never seen her on a bad day ). The doctor said " at this stage we are advised to stop medication ". I really lost it then and gave him what I was feeling. He finally agreed to try mom on Ebixa and up to now there is nothing.
Suptowngirl

 

[Margarita]

It took my mother a good three mouths before I could see the improvement it’s different with everyone. Don’t want to sound hard but there no miracles I do not know what symptoms your mum having before not taking this medication my mother was double incontinent could not talk just keep looking around .
get very very confused Just scream shout at every one and


3 years on

Mum not incontinent anymore go to the toilet herself enjoys going to daycentre, but does sleep a lot if she does not go to daycentre and needs help with washing ,but can do a lot when prompted Can talk a lot ask question asks me to buy her things like now she wants a new bag

 

[Tressa]

My mum had to be taken off Ebixa as it give her terrible Diarrohea, she already suffers from irritable bowel so it really did make it worse, so much so that she ended up in hospital for a few days. Once the Ebixa was stopped her bowel settled down. A friend of mines father who has Vascular Dementia also had a similar situation and had to be taken off it. But the AD support group I used to go to, some of the carers their had great stories about it so I think your best bet is to keep talking to the doctors and let them know your worries. And also go by your gut instinct, it never fails.

Good luck

T.

 

[Michael E]

I noticed a difference within 48 hours when Monique started on it about 18 months or 2 years ago... That was the good news. The bad news was that this 'artificial' awareness just made her see her situation more clearly - had big depression problems (they go with AD territory anyway) and although she seemed brighter and more aware I really questioned if that awareness was a kind thing to give someone!

She still takes Ebixa but has gone down hill quite a lot so it is impossible to gauge what effects it actually has except she is very aware things are wrong with her and very scared and sad about it... Could be a mixed blessing that drug?

who knows?

Michael

 

[Margarita]

Michael what do you mean by

'artificial' awareness ?

 

[Michael E]

Michael what do you mean by

bit like snorting coke...

All bright and breezy but not quite real

(I am told!!!)

Michael

 

[BeckyJan]

Hi Suptowngirl: I hope the Ebixa works for your Mum.
I am curious that you are in Staffs and your consultant has prescribed it at all - was this on the NH?
As we are in Derbyshire I am told we have no chance of a NH prescription and yet there does seem to be some odd loopholes which I feel I should check out. Is there anyone else out there who does get Ebixa on the NH and anyone who does not get it? If you get it privately - how?

I do not want to make a fuss at this stage as my husband is ok with Aricept but I would like to know for the future. I think he is heading for the next 'stage' and maybe that is the time for a change or addition to medication.

Am I correct - did NICE reject it!!

Best wishes Beckyjan

 

[wendy43uk]

we live in sheffield and was prescribed ebixa 6months ago i
t worked for 3 months allmost
immediately but is not working now i beleve its now been taken of the nh unless
uo
u
are allready taking it my hubby scored 11points and was still given his meds for a least 6months

 

[Nebiroth]

Yep AFAIK Ebixa has been withdrawn from NHS, thanks to NICE (a totally inappropriate acronym if ever there was one).

They have also recommended that Aricept not be given until AD reached the intermediate "moderate" stage, rather than at the start.

WHich is all utterly disgraceful, it is being done under the usual double-talk about "effectiveness" but I think it is all about money.

But people already taking these medications will continue to get it.

I pushed very hard for Dad to be put on Aricept as quickly as possible in January, after his diagnosis in December, because I knew that the new rules were coming in later in the year. The Memory Nurse said that they were snowed under with referals from GP's struggling to get patients on Aricept before the new rules came into effect.

In effect the NICE ruling is like saying "sorry you have to get much iller before you can get treatment".

But Aricept can enormously effect quality of life for patient and carer. It has certainly made a HUGE difference to us; no more evening rows about it being morning and time to take tablets or thinking people on the TV are real or not recognising loved ones.

But under the new rules Dad would not have been prescribed the drug until he got much worse.

It is absolutely shocking.

I just wish that the members of the NICE committee who made the decision could be made to care for someone with "mild" dementia for a few weeks - I think they would soon change their minds. They would soon be thinking that ANYTHING that can lead to even a small improvement is worth it.

 

[wendy43uk]

how can nice say have arecept in the middle stage when it helps better in the first and dose not work in the middle stage this has allmost been proved thats whay we found when the arasept stopped working we was given ebixa wich worked for 3 months john still takes acerpt and ebixa bot nither seem to be working

 

[wendy43uk]

how can nice say have arecept in the middle stage when it helps better in the first and dose not work in the middle stage this has allmost been proved thats whay we found when the arasept stopped working we was given ebixa wich worked for 3 months john still takes acerpt and ebixa but nither seem to be working anymoor i have been told that thire is no new meds so i just have to wach things get worse

 

[wendy43uk]

must put my glasses on so i can see the buttons pressed it twice sorry

 

[Nebiroth]

how can nice say have arecept in the middle stage when it helps better in the first and dose not work in the middle stage this has allmost been proved thats whay we found when the arasept stopped working we was given ebixa wich worked for 3 months john still takes acerpt and ebixa but nither seem to be working anymoor i have been told that thire is no new meds so i just have to wach things get worse

They didn't say it doesn't work, they just said that it's not "cost effective".

My *guess* is that the most cost-effective useage of Aricept is to wait until the patient gets to the point at which they need professional care (which is expensive), and then they get treatment.

The usual scenario is that people in the beginning are not bad enough to need such care, therefore, it is not "cost effective" to treat them. They and their carers can "manage".

Of course, this completely ignores the question of quality of life for both the patient AND their carers.

I know from personal experience that the improvement in that, in the early stage, can be HUGE with Aricept.

But that doesn't save the NHS money, so it doesn't count.

 

[Skye]

I too fought to get Ebixa for my husband. He's been on Galantamine for six years and has done very well, but his speech is now deteriorating fast. I hoped Ebixa would give him a boost, but I didn't notice much difference, and his speech certainly didn't improve.

We went on a cruise in May, and he contracted the Norwark Virus, since when he's had diarrhea. Now the GP doesn't know if the problem is Norwark or Ebixa, so he's taken him off Ebixa.

I'm at my wits' end. He's now bowel incontinent, though not bladder.
The GP says if it's Norwalk it may be chronic. I don't know how long I can cope with this on top of the communication difficulties

 

[Canadian Joanne]

Suptowngirl,
The Ebixa certainly worked for my mother for probably a good 10 months. She is declining but at least she will allow people to bathe her & so on. Before Ebixa, she was really nasty.

So it's worth the trial and I think 3 weeks is too early to tell. If there aren't any side effects, I would recommend hanging in there. After all, you can always discontinue it later if there are problems.

I can't say it improved my mother as much as it made her so much more pleasant and a nice human being. As opposed to the evil, swearing, punching, screaming, paranoid person she had become.

Joanne

 

[suptowngirl]

Thanks to you all for the info. Beckyjan, Yes it was prescribed on NHS. I asked the consultant back in January about it and he tried his best to avoid prescribing it. He said he wanted to continue with Galantamine for a while. He asked what I knew about the drug and I told him I had read about it and spoken to people on this forum. When I took her to see him in April it was the same but as mom is getting worse I was not going to walk out of the hospital without it. When he said that he is advised at this stage to stop medication I asked again about Ebixa, he said " oh you have remembered that ". Too right I have remembered . This is my mom I am fighting for. I asked him how he would like to see his mother dying a slow horrible death because I am not ready to see my mom go downhill if there is something that can help her. That's when he agreed to try her on it.
She has been weened off Galantamine and is now on 10mg morning and night.
I'm not expecting a miracle but I am just praying for some more time with my mom.
Thanks to you all, you have helped

 

[suptowngirl]

Sorry Beckyjan, I forgot to say that my mom lives in Birmingham.

 

[Skye]

Hi Nada

Thanks for the welcome. Don't know if you've already received this, I keyed it in then it disappeared! I'm just getting used to a laptop, never used one before but it does mean that I don't have to keep disappearing to check messages.

Yes, I do use the Alzscot website, but they don't have a forum. I'll have to get on to Sarah about that, it's good to talk!

I do publicity interviews for her -- in fact I'm supposed to be recording a programme for BBC Scotland tomorrow -- hope we don't get too many emergency interruptions

Hope to be a regular visitor,

Cheers

Skye