Anyone been prescribed Ebixa?

[JennyT]

My mum has been diagnosed with Alzheimers, and she has been prescribed Reminyl. I hadn't read much about Alzheimers as I was ignoring the obvious. Unfortunealtey I can't bury my head any longer. I have been reading that there is another drug called Ebixa that can be taken alongside the Reminyl to help. I will ask the doctor about this but I wanted to know if anyone on here has been prescribed it or has any information about it. I notice that you can purchase it over the internet.
Any advice or information would be very much appreciated,
Thanks
JennyT

 

[Skye]

Hi JennyT

Welcome to TP, you'll find a lot of support here.

My husband John was prescribed Reminyl when he was diagnosed 7 years ago, and it had a huge effect. He immediately became more aware, more confident and more independent. His decline over those 7 years was slight.

About 18 months ago he was prescribed Ebixa (after much nagging by me), but I didn't notice much improvement.

Then six months ago he caught a virus, which has precipitated a sudden slide in his AD. He was taken off Ebixa, in care that was contributing to his diarrhoea. He has just recently gone back on it, and I'm hoping it will halt his slide. Haven't noticed much improvement yet, though.

Keep us informed.

Love,

Edited to add: Ebixa is for the later stages of AD, so may not be suitable for your mum yet.

 

[Nebiroth]

But hasn't Ebixa been completely withdrawn from the NHS by NICE - along with the new rules that limit drugs like Aricept (Donezepil) and Reminyl (galantamine) which will no longer be available for people in the early stage. Aricept and Reminyl work the same way, I think that Aricept is usually the first choice as it is less likely to have side-effects.

Incidentally, if you are already receiving these - including Ebixa - they will not be withdrawn under the new rules. This affects new patients.

Ebixa was only for people in the late stage anyway.


My Dad has benefited from Aricept, but under the new rules would have been denied it. Until he got worse!

Personally I think the NICE committee should be made to care for someone for a week or two, they would soon realise that any improvement whatever is worth it! It literally makes me white with rage.

 

[Skye]

Aricept and Reminyl work the same way, I think that Aricept is usually the first choice as it is less likely to have side-effects.

Don't want to start an argument about the relative merits of different drugs, some work for some people, some for others. And some people cannot tolerate any.

Just want to say that the consultant told me when he prescribed Reminyl that Aricept slows the formation of plaques in the brain, and Reminyl does this, but also has an added ingredient which can help to break down plaques. I don't know how they proved this (or if it has been proved). AS I'm sure has more information.

Certainly Aricept is the more commonly prescribed drug, but that could be simply because it's cheaper.

Anyway, I'm sure we're all grateful for anything that works, and angry about the NICE decision.

 

[Michael E]

Jenny hi,

Monique was prescribed EBIXA about 18 months ago and I noticed an immediate improvement in awareness within days.. It certainly made her a lot clearer - has been described as clearing the fog...

The downside of it was she became very aware of the trouble she was in - that she was ill and that made her very depressed and angry.

I was and probably still am in real doubt if the benefits actually outweigh the problems the drug produces.

Probably different for every person at their stage of AD


Michael

 

[Nebiroth]

There is a page about these drugs on the website, here is a link to it

http://www.alzheimers.org.uk/After_diagnosis/Treatments/info_drugs.htm

 

[Skye]

Thanks, Nebiroth. I guess it's more or less what the consultant told me, in layman's terms.

 

[JennyT]

Thanks

Thankyou to everyone for your replies. I hadn't understood that Ebiza was for later stages. It nice to hear that the drugs may help for a few years although as was pointed out in this thread the more aware the person is the more likely they are to be upset about the illness. Thanks again to everyone I shall see what the nurse says on Monday about it.
JennyT