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Ebixa any views?

davidw

Registered User
Dec 28, 2005
23
swansea,uk
My 59 yo wife's condition has steadily deteriorated lately and her MMSE score is now below 12 and with my support she has come off Aricept. Her consultant is now asking me to consider Ebixa by private prescription.I have searched the web but there is little positive clinical research that I can find supporting its effectiveness--I guess this is why it is not available on the NHS. Is there anyone with experience of its use on their loved ones? I am not keen to put my wife and family through another period of uncertainty unless there is real hope that it will help.

Thanks for reading this
 

jc141265

Registered User
Sep 16, 2005
836
45
Australia
Only from experience and every case is different. Dad was put on Ebixa for a time, with high hopes...and he did seem to suddenly improve for a bit...it was lovely to see it...unfortunately it didn't last...but then again, it didn't seem to make him any worse...its hard to tell with this disease what effect medication has, because you don't know how bad or good they would be without the stuff...:confused:
 

katherine

Registered User
Sep 5, 2006
57
Hello
My mum was given ebixa and again it worked for a while - was great and made her feel happier but it only worked for a very little while. She's still on Aricept and Ebixa although she can hardly even speak now. Her consultant thinks there won't be much to be gained by taking her off them at the moment...what do you think of that? How has your wife responded to coming off Aricept?
Kate x
 

sue38

Registered User
Mar 6, 2007
10,854
52
Wigan, Lancs
Hi David,

My Dad was put on Ebixa over 12 months ago (shortly after diagnosis) because a pre-existing heart condition made him unsuitable for Aricept and the like.

We have not experienced any bad side effects (apart from a short spell of diarrhorea) but it's very difficult to say that Ebixa has had a positive effect.

It may have slowed the progression of the disease, but without being able to access that parallel universe where my Dad does not take Ebixa, it is difficult to say. Certainly when my Dad scored 8 on an MMSE and it was suggested he be taken off Ebixa we elected he stay on it. My Dad takes the minimum dose as Ebixa is secreted by the kidneys and my Dad's kidney function is not great, but normal for a man of 83. I assume that as your wife is only 59 she will be able to take a normal dose.

Just our experience.
 

Grommit

Registered User
Apr 26, 2006
2,127
Doncaster
Jean, my wife, was 60 when she went onebixa after having had 18 months or so on Reminyl.

She is certainly able to take Ebixa without difficulty, whereas she had tremendous difficulties with Reminyl.

I was told that Ebixa was a drug which calmed the patient rather than having any serious meaningful effect on the disease.

The other drugs were supposed to have the ability to restrain the disease symptoms.

All I can say with all honesty is that Ebixa does not have any harmful effect on Jean's metabolism and that it has, until recently, reduced the amount of distress that taking the other drugs caused.
 

Skye

Registered User
Aug 29, 2006
17,000
SW Scotland
My husband John has been on Reminyl since diagnosis, and it worked brilliantly for him.

About 18 months ago, when he began to deteriorate, he was given Ebixa as well. It didn't seem to make any difference at all. He stayed on it for a year, and then was taken of it. There were no problems either time, but no apparent benefits.

As you can see, like other dementia drugs it works for some and not for others. It might be worth paying for a few months, at least you'll have tried everything.
 

davidw

Registered User
Dec 28, 2005
23
swansea,uk
Ebixa

Thank you all for your replies which seem tohave quite at least two common themes ie no harsh side effects, possible short term gain.

I am most grateful for the support.

In response to one question of me--my wife has been off Aricept for a week only but I feel in that time she has been calmer and less aggressive so life has seemed a bit easier for example she has been more compliant when I am trying to help her dress or use the bathroom. I hope that helps.
 

davidw

Registered User
Dec 28, 2005
23
swansea,uk
Ebixa

Thank you all for your replies which seem to have at least two common themes ie no harsh side effects, possible short term gain.

I am most grateful for the support.

In response to one question of me--my wife has been off Aricept for a week only but I feel in that time she has been calmer and less aggressive so life has seemed a bit easier for example she has been more compliant when I am trying to help her dress or use the bathroom. I hope that helps.
 

Canadian Joanne

Volunteer Moderator
Apr 8, 2005
16,434
66
Toronto, Canada
My mother benefited a great deal from Ebixa. She didn't have any noticeable side effects but it did make her calmer and more aware & alert. The good effects lasted about a year. She has since declined, of course, but I am glad we put her on it. Actually, at the time Ebixa was only conditionally approved in Canada & I had to fight tooth & nail to get her on it.

My philosophy is to try everything. Leave no stone unturned. If it doesn't work for you, at least you're tried it.
 

Margarita

Registered User
Feb 17, 2006
10,824
london
My mother been on it for 6 years .


Ebixa work extremely well for my mother , it gave her back the awareness of how to go to the toilet on her own , rather then mistaking all rooms for toilet ( even bath was use as a toilet ) also took away her paranoia , which was really bad . also was getting into a stage of not knowing me , she would think I was her sister

It was quite amazing to see thinking back now , considering when she was in that stage I was ignorant of what was wrong with her , till brain scan told me she had AZ .

it did give her back a small part of seeing the logic of things as in accepting out side help and also my help .

My mother always had a short temper , so the medication did help for a few years with that

if did not give her back any skills in cooking or washing up or washing herself .

what coming back now for the past year is her irrational thinking and her temper and the incontinence , but she fighting it as she still know where the toilet is and go to the toilet on her own , even thought now she ask for my help now then to wipe her .

but she still recognizes me and my children, even thought her memory scoring 2 years ago was a 10
 
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thehoggers

Registered User
Mar 24, 2008
5
It worked for us...

My sister is 44, with Down's syndrome and diagnosed with FTD. She has been on Ebixa since mid-November and she has been steadily regaining back some of the learned activities she was no longer able to do.

She is only on 5 mg per day, in the evening, but she is now able to knit again, to watch TV, listen to her IPOD, and write out cards and emails. Since she started this journey with a disability, I know it is a different situation, but we are so thrilled with her response and we although she is also on an antidepressant and an antipsychotic, we can't help but think the ebixa has made the difference for her.