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    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

My Aunt - Ebixa success

widget

Registered User
Jul 18, 2005
44
Lincs
:)

Hi everyone
I just thought i'd give you an update on my aunt. She's now into her sixth week of Ebixa (it took her old consultant 's death for it to be prescribed by a new consultant...)

Well, what a difference it has made! We went to stay with her and my uncle while she was taken the low dosage in the first week and i couldn't believe my eyes - she had changed from stumbling around holding her hands out to steady herself to walking up the stairs normally, holding two glasses of water for my children!!

Now in her sixth week of medication I can phone her and have a 'normal' conversation and she's stringing sentences together without having to ask my uncle what certain words are.

She's also getting on well with the carer who has been going in a morning to help her wash for the last 3 weeks (i thought the poor lady would have been turfed out but no, exactly the opposite has happened!).

I know that there's the possibility that the Ebixa's effect may diminish but at the moment we're all riding on such a high that at least we have her back for at least a while. My aunt and uncle are coming to stay with us in two weeks time and i can't wait to see how she's getting on, fingers crossed she'll be doing great still!! :)
 

Nebiroth

Registered User
Aug 20, 2006
3,511
marvellous news but I thought that under the new NICE (aka VERY NASTY) guidelines Ebixa had been withdrawn on the NHS?

Done by the same bunch of daft pen-pushers that have decreed that Aricept is only "cost effective" in the middle stages of AD?
 

Margarita

Registered User
Feb 17, 2006
10,824
london
Glad to read your good news hopefully you untie well be like my mother 3 years now, takeing Ebixa still working for my mother

3 years on Does need more prompting as she sleeps more, but when prompted she gets on with it .


but I thought that under the new NICE (aka VERY NASTY) guidelines Ebixa had been withdrawn on the NHS?
I also thought that I have been on the NICE site looking for those guidelines ,but can't find them ?
 

jenniferpa

Registered User
Jun 27, 2006
39,448
Maragarita, I think that's because of the appeal filed by the AS among others. There was a hearing in July, but they're still waiting for a final decision. Fingers crossed. Until that decision, ebixa remains prescribable (is that a word) I believe.

Jennifer
 

Nebiroth

Registered User
Aug 20, 2006
3,511
Ah this might explain it.

The good news is also that as I understand things, even if the new guidelines come into force, anyone already receiving any of the drugs in question, will continue to get them.

which is why our local mental health unit was snowed under with referals from GP's anxious to get their patients onto them before NICE goes and pulls the rug from under everything.

Stuff isn't easy to find on the NICE site, but I recall finding the various reports (which are in .pdf format) by typing ALZHEIMERS into the search facility. The various reports should be there somewhere. I think the most relevent was the fifth phase final report which contained the recommendations for new prescription and treatment guidelines.

What was interesting was the table that showed the various factors and the NICE response. There were a lot of entries under "patient representations" and "carer representations" and "quality of life", all of which were met with a blank brick wall of "not cost effective for mild stages".

It makes you wonder if the people at NICE have ever actually had to look after a loved one in the "mild stage". I think not.
 

Margarita

Registered User
Feb 17, 2006
10,824
london
Thanks jenniferpa for that .


Nebiroth in the past I also type in Alzheimer's I found the Alzheimer's Society appeal letter and reports from NICE in 2001 /5 .
 

Kathleen

Registered User
Mar 12, 2005
639
65
West Sussex
Hello Widget

I am so pleased for you all.

I remember when Mum started on galantamine, she was so much better for a good few months, I hope the improvement lasts a long while for you all, treasure every day.

Kathleen