PET scan, Ebixa and Aricept

[LynneMcV]

We went to the memory clinic today for my husband's latest memory test - and to pick up the results of his PET scan.

The scan indicates that Alzheimers is most likely what my husband has (however it also comes with the caveat that Alzheimers can be over-diagnosed!)

The gist of it is that the scan showed a 'cold/cool area in the posterior of the brain' and there is nothing to indicate any other possible cause of dementia - so Alzheimers is the most likely cause. I suppose this at least puts paid to the more 'airy-fairy' diagnosis of "mixed dementia, but we are not sure what the mix is" that has been bandied about for quite a while though.

What does surprise me is that the consultant has suggested putting my husband on Ebixa along with his Aricept (he takes 5mg per day of the latter). I had always thought that Ebixa was for more severe cases of dementia - particularly for behavioural issues, of which my husband has none.

While my husband's memory test score has dropped to 22 (it was 24 in January), and he is showing more confusion as a result, I certainly wouldn't have put him in the moderate to severe category yet.

Anyway, the consultant is starting him on an 'initiation pack' of Ebixa for 28 days, and has written out a further prescription for another 28 days at the full dose, to carry on from that. He is also going to 'try to persuade' our GP to continue prescribing the medication - but has said that if there is a problem, he is happy to continue prescribing it himself for my husband.

I couldn't imagine what the problem might be that 'persuasion' might be needed, or why our GP might refuse to prescribe it.

However, I have since been reading on this forum and elsewhere on the web that it is not common in the UK to have both Aricept and Ebixa at the same time (NHS doesn't tend to do this). However, it seems that in the USA both drugs are given together, and they don't wait for the severe stages to do so.

The consultant says that although the drug came onto the market to help address behavioural issues, research has since found it to be more effective on memory issues. I know it won't improve his memory, but hopefully it will be more effective at slowing things down, particularly as he is unable to take the full dose of Aricept due to a slow heart rate.

My husband is off to get his prescription as I write this. I hope it helps him.

I am glad the consultant is 'going against the grain' of what the NHS usually does. I know from reading the forum that others have wanted those they care for to be on Aricept and Ebixa together and the request has been rejected - so I am happy that the consultant is prepared to fight my husband's corner.

It may be that the new combination of drugs will not agree with my husband - but it is nice to be given the chance to try it.

 

[Canadian Joanne]

It may be that the new combination of drugs will not agree with my husband - but it is nice to be given the chance to try it.

I quite agree that it's nice to be given the chance, and that not allowing people to have that chance is so unfair, in my opinion. After all, there are those who don't respond to the drugs but I firmly believe in giving everything a try.

When they put my mother on Ebixa, they switched her Aricept to Reminyl. We found that this did help Mum a lot.

 

[lupo]

Unfortunately, My lovely Mum passed away last week. However, I do remember an improvement when she changed to Ebixa. She was much more settled

 

[Spamar]

After delusional episode OH put on Memantine as well as aricept, which he has been on for some years. Result: no major delusions and mood much better, odd joke here and there and gone back to quoting poetry ( lifelong habit).

I believe that recent research has found that aricept is useful for all stages of dementia.

The othe point is that consultant said she could give the drug for three months, but when I tried to get the next prescription from GP, the surgery said they couldn't give it to me for another month. I told them what I would do if OH started with delusions again and the duty doctor graciously gave me a prescription for 14 days pending the return if the usual GP from his holiday. Appointment tomorrow.

 

[LynneMcV]

My sincere condolences for your loss lupo - and thank you so much for taking the time to reply when you must have so much else on your mind right now.

Thank you also Canadian Joanne and Spamar - your feedback is very welcome.

All the comments made so far indicate favourable results with Ebixa - so, fingers crossed that it will also help my husband. I am feeling optimistic

 

[LynneMcV]

Update since starting on Ebixa

Thankfully my husband seems to be getting his sense of direction back again. Whether it is because the heavy cold he had has now gone that he is less confused, or whether it is down to the fact that he is taking Ebixa, I don't know - but it is a relief to know that when he sets off to the bus stop, whether in the dark or daylight, he can find the right one again

I am glad, because he was losing confidence - but now he has some of that confidence back.

Re. the Ebixa, he has complained of feeling sleepy earlier than usual. I know this is one of the expected side-effects, but he is only on 5mg a day at the moment, eventually building up to 20mg over a four week period. If it is the Ebixa making him sleepy, I dread to think how he will be on 20mg!

Mind you, it might have nothing to do with the Ebixa. It could equally just be his body clock adjusting to shorter daylight hours now that winter is here.

One thing I did notice is that at the weekend he had a good stab at doing one of the crosswords in the Sunday papers. He used to do them regularly, but over the last few months his interest and concentration had fallen and he more or less stopped doing them. However, over this past weekend, he even said that he would like more puzzles / crosswords to do. I am glad to see something of the 'old him' returning.

Mind you, I am not going to say Ebixa has made everything plain sailing - we are still having blips which remind me of our new reality that is dementia - be that as it may, we are both still managing to find laughter in the situation at times.

The funniest thing that happened this week was when I was working from home. I was on the work phone talking to a manager, when my home phone began to ring. My manager urged me to go and answer it if I needed to - but I could see my husband making a beeline for the phone himself, so carried on with my work call.

While discussing business I ended up quite mesmerised by the scene unfolding before me...

"It's a witheld number" he said out loud (I have started using caller ID because of the number of cold calls from sales people we were getting - and my husband knows not to pick up the phone if we cannot identify the caller)

He looked at me, mildly panic struck. The phone was ringing, he knew I was on the phone to work and he felt he had to stop the phone ringing in case it disturbed my work call. He also knew not to answer the phone call from the dreaded 'witheld' number. The dilemma time was short-lived though. He put the phone on the settee, placed a cushion on top - then sat on the phone to muffle the ringing - a complete look of triumph on his face.

It did the trick I guess but I don't know how I managed to complete my work call without so much as a giggle escaping.

Afterwards he realised how odd it must have looked - and we both had a laugh together

On another occasion, a couple of day ago, his face was a complete picture when he walked out the front room, through the kitchen, into the dining and suddenly found himself back in the front room again where I was sitting (we sometimes have the sliding doors between the dining room and front room closed so that it is two separate room rather than open plan - and this is what he had been expecting. He gave a great big smile when he realised his confusion and said "I'll do that again, it will keep me occupied all day!"

Today was a little less amusing for him though. He is still struggling to use his mobile phone (the problem is with texting, not making a phone call) and somehow he ended up accidentally deleting his entire contacts list! He is a bit more reassured tonight because I've managed to add some key numbers back in - and he understands that we will manage to get the others added back in due course

I've suggested that he asks his friends to phone rather than text, as this is what is causing the problem. He thinks this is a good way forward - but whether they will or not remains to be seen. It seems that nobody wants to hold conversations these days - just constant texting grrr