Reminyl versus Aricept

Gromit

Registered User
Apr 3, 2006
187
0
Edinburgh
:confused: quick question for you all. My Dad has been prescribed Reminyl however I have noticed many of you mention Aricept. So I thought I would do a comparison - unfortunately all I could find on the web was this - which seems to say Aricept is better. Does anyone have any experiences of Reminyl - should I be asking for Aricept if this is better?

http://www.prnewswire.co.uk/cgi/news/release?id=82963

As always - any advice would be gratefully received.

Thanks

Alison
x
 

Skye

Registered User
Aug 29, 2006
17,000
0
SW Scotland
Hi Alison

John has been on Reminyl from day 1, and it had a dramatic effect on him.

The CPN who first tested him told me to ask for Reminyl, because it was better, but it wouldn't be prescribed unless I asked for it, as it is more expensive.

It has an extra ingredient which appears to stimulate the neurotransmitters. It has certainly worked for John.

However, it does have side effects in some people (John hasn't had any problems). If I were you I would give Reminyl a try, but be on the alert for side effects. Your dad will start on a small dose in any case, and will build up to the maximum if he tolerates it.

Hope it works

Love,
 

Gromit

Registered User
Apr 3, 2006
187
0
Edinburgh
Thanks Hazel

Thanks for that positive message. I did write you a reply but seemed to lose it = so trying again now!

Dad started on Reminyl just over a week ago on 8mg to get him used to it. So far so good no side effects. After four weeks we can go up to 16mg and see how that goes.

Dad is in early stages and currently only suffering from short term memory loss - very forgetful and repetative.

I hope these drugs do work as it would be great for Dad and hopefully help Mum too as she is very stressed out lately understandably so.

I'll keep you posted.

Thanks again.

Alison
x
 

Nebiroth

Registered User
Aug 20, 2006
3,510
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Reminyl, Aricept and Exelon all work in the same basic way, although as has been said Reminyl contains an extra drug as well. But they all have very similar actions and the aim is to increase the level of neurotransmitters.

AFAIK Aricept is the usual "first choice" because it is generally better tolerated with less risk of side-effects than the other two.

In all cases they will start on smaller doses and build up to larger ones (which is called "titration" I believe). This reduces the risk of side-effects and minimises them if they occur, and if necessary the drug can be stopped.

When Dad started Aricept he started with 4 weeks on 5mg and then moved to 10mg after.

With Exelon, which he is now taking, the build-up has been much slower, starting with only 3mg a day and increasing by 1.5mg every to weeks and we still haven't reached the full 12mg daily! This is because Exelon carries the highest risk of side-effects and we were told "if they happen they can be very nasty".

Your Dad may have been given Reminyl for a variety of reasons, his condition, the experience of the consultant, fitting in with any medications, etc.

My Dad was switched to Exelon because it is, apparently, more helpful for patients with "psychotic" symptoms.
 

connie

Registered User
Mar 7, 2004
9,519
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Frinton-on-Sea
Lionel was started on low dose Exelon when he was first diagnosed over 5 years ago.

He has always tolerated this drug well, although now I question the effectiveness of same.

His two friends, with this illness, were both prescribed differently, one Aricept, one Reminyl. For a couple of years their symptons remained in parallel. Today, all three of them have have their own different problems.
 

Gromit

Registered User
Apr 3, 2006
187
0
Edinburgh
very helpful

Thanks for your replies this is very helpful for me. Especially as we are at the beginning of this journey and it seems being well-informed is the key thing I can do at the moment.

I'll keep my fingers crossed for no side effects (for all of us).

Dad is going to be going to the memory clinic quite frequently to keep him monitored on reminyl. We are due again next on 16th May - this is likely when they will want to increase the dose. Scary stuff.

Do these drugs have any clear effects that can be seen in early stage? I am trying to manage my Mum's expectations - she is aware there is no cure and the drugs will hopefully slow things down but I worry that she is expecting alot as I have noticed her saying "well he isn't any better" and that's even before we have got him to the right level of dose yet. I just hate having to put things back into perspective for her but I don't want her to build up her hopes too much based on these drugs.

Once again your advice would be very much appreciated.

Thanks

Alison
x
 

janetruth

Registered User
Mar 20, 2007
563
0
nuneaton
Reminyl is good for mum

Hello Grommit,
This is a positive post, my 82 year old mum who now lives with us, long story as to how that came about. Well she has been on REMINYL XL (slow release capsules) 8mg for 6 months, no problems. We are still waiting for increase in dose, which was recommended in March. We fetched this months supply from chemist and they gave us REMINYL 8mg tablets I phoned chemist and yes, they had given us the wrong ones.
Since mum has been on them there is a definate improvement. still have some bad days but most are good.
Hope this helps
bye for now
Janetruth
 

Skye

Registered User
Aug 29, 2006
17,000
0
SW Scotland
With John, I did notice an improvement straight away. Not in his memory, or his speech, but in his mood and confidence. From being dependent and nervous, he was almost back to his old self.

Having lost his driving licence on diagnosis, he improve so much that we applied for him to have it back, and he continued to drive for another three years.

I also think it has slowed the progression, but that can't be proved, because we don't know what would have happened without the medication. I only know that we had six good years that we might never have had, and for that I'm grateful.

Love,
 

Gromit

Registered User
Apr 3, 2006
187
0
Edinburgh
Hazel

That is so great to hear, and I know I shouldn't expect the same for Dad, because as we all know this disease is so unpredictable- but it certainly is encouraging stuff. Especially with regard to the driving license.

We are having a battle with Dad at the moment trying to get him to report to the DVLA and insurance. He only drives with Mum in the car with him - he used to be a long distance driver - so hopefully his driving should be ok as it is a long term skill. Of course we only allow him to go short distances now. But we really do need to get the authorities told about the diagnosis.

Thanks again for the positive messages. The worst thing for me is not knowing what to expect, thank goodness for TP, it really does help.

Thanks

Alison
 

Skye

Registered User
Aug 29, 2006
17,000
0
SW Scotland
Alison,

You really do have to notify DVLA as soon as possible, it's a legal requirement, (fine of £1000, I think) and could also invalidate his insurance.

But they will send a form to your GP or consultant to ask if your dad is fit to drive. Ours always asked my opinion, which is how I managed to keep John driving (like you, he only drove when I was with him).

So if you have a word with the GP, it could be that he won't lose his licence immediately.

Good luck,
 

sue38

Registered User
Mar 6, 2007
10,849
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55
Wigan, Lancs
My Dad is on Ebixa which works in a different way to the other 3 drugs talked about, but my Mum also expected to see an improvement within a week or so.

I asked the consultant at the second appointment how long before we could assume the drugs were of no effect. His reply was a minimum of 6 months and up to 12 months. He has now been on drugs since January and we think we can see slight improvement although still bad days of course.

Although this is a different treatment to Aricept and the like, the point is that having that information helped us to realise that we shouldn't assume that because there had been no immediate improvement that the drugs were a waste of time, and it is helping us to be more patient.

I would certainly ask at the memory clinic how long it can take for the drugs to work.

Sue
 

sue38

Registered User
Mar 6, 2007
10,849
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55
Wigan, Lancs
On the driving aspect we reported the situation to the DVLA in December and although we understand that the GP has been contacted we are still waiting to hear, so don't assume that he will be stopped tomorrow. We also reported to the Insurance and they had no problem with keeping him insured until the DVLA made a decision.
As long as he/you have reported it to DVLA and Insurers it is up to them. You have done your part.

I understand that he can be referred for a driving assessment and think this is a link to relevant fact sheet http://www.alzheimers.org.uk/After_diagnosis/Driving_and_travelling/info_driving.htm.

We have stopped my dad driving at night and he only drives locally - as someone remarked so at least if he kills someone, it will be more than likely be someone he knows:D Joking aside, at the moment he can drive well, and can cope with people pulling out in front of him etc. but who knows how long this will last.

I suspect that the DVLA will say he can't continue and I think I will be happier when he's not driving, but he will be anything BUT.:mad:

Sue
 

Skye

Registered User
Aug 29, 2006
17,000
0
SW Scotland
The hardest thing for John was approaching a busy roundabout. Having to decide when to pull out, and cope with the gear change at the same time was just too much.

I bought a new car with automatic transmission thinking it would make it easier for him, but it didn't work -- it was a new system! I think he only drove that car twice, so it was an expensive mistake. On the plus side, I now love automatics!
 

Nebiroth

Registered User
Aug 20, 2006
3,510
0
Gromit said:
Do these drugs have any clear effects that can be seen in early stage? I am trying to manage my Mum's expectations - she is aware there is no cure and the drugs will hopefully slow things down but I worry that she is expecting alot as I have noticed her saying "well he isn't any better" and that's even before we have got him to the right level of dose yet. I just hate having to put things back into perspective for her but I don't want her to build up her hopes too much based on these drugs.

Once again your advice would be very much appreciated.

Thanks

Alison
x

There is no way to tell because individual reactions are so different.

It can range from no effect, to slowing down the progression, to temporary improvements.

As you are probably aware, the drugs do not treat the disease or slow down the progression of it, but they can treat the symptoms and the progression of symptoms to vary degrees.

It can be very difficult to tell if there is a benefit, because you don't know if things could be much worse without the drug.

With my Dad we were very lucky, we notice an improvement - there was less tendancy to become confused and disoriented.

It usually takes time for improvements to appear, we were told the "maximum benefit" usually appears after about three months.

I think you are very wise in trying to manage your Mum's expectations. It can be crushing to expect miracles and then find that you are one of the unlucky ones who don't get any visible benefit.
 
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Gromit

Registered User
Apr 3, 2006
187
0
Edinburgh
Thanks everyone - I'm back on the case!

Thanks for all your comments they are very helpful to me.

I will be on the case again re the DVLA and Insurance - but Dad is being his usual stubborn self about this. We would rather he notified them, so at least it has been in his control - I think he would be furious if we notified them, which would make Mum even more stressed out.

The Alzheimers org were supposed to visit Mum for the first time yesterday - but unfortunately they couldn't make it due to staff illness - we were going to mention the driving, as he does seem to listen to other people like advisors and doctors - I suppose it is easier to challenge those that are closest to you. So I will find out when they can next visit.

Mum seems in a bit of a bad mood on the phone at the moment (I phone daily and visit monthly as they are 300+ miles away) - I can only assume Dad is driving her up the wall again at the minute. It is so frustrating not being near enough to take some of the pressure away for her. Could do with winning the lottery so I can get rid of my mortgage and buy a huge house for us all to live in!

Oops - sorry for the rant there.

Thanks everyone for your comments. I think the diagnosis is starting to sink in with me this last week - so being able to talk to you all about these things really is a saving grace!

Sending you all hugs of thanks.

Alison
x
 

Skye

Registered User
Aug 29, 2006
17,000
0
SW Scotland
Gromit said:
Mum seems in a bit of a bad mood on the phone at the moment

And can't I relate to that!!!

It's so frustrating trying to reason with someone who a) doesn't understand, and b) wouldn't co-operate even if he did.

It's going to be so hard for you, trying to support from a distance. I'm afraid you're going to have to accept that there will be occasions when your mum will take her frustration out of you. Please don't take it personally, you're probably the only outlet for her feelings.

The fact that the AS rep didn't turn up, even though there was a good reason for it, will have made her feel very let down.

So I'm glad you're ranting to us, we understand and can support. Your poor mum feels she can't cope with anything else going wrong.

Love and hugs,
 

Gromit

Registered User
Apr 3, 2006
187
0
Edinburgh
You are sooo right

Hazel

You are so right. I try and let mum have a good ol' rant when she can to me (only happens when Dad is either in the Garage or the Garden as she won't do it in front of him for obvious reasons).

I'm going to give her another call in a moment - see how she is. See if she needs to bend my ear a bit.

Plus I'm toying with going to a care group up here in Scotland (see my latest thread) - but dithering on this at the mo.

I wish I could be nearer to my parents but careers/finances/marriage won't really allow for it. Though as things progress I have offered to move them near to me if we can. For now though Dad is better off in familiar surroundings we think.

My husband is contacting our friend in the pharmaceutical (sp?) industry today - might get the chance to meet up with him later. so I am going to write down a list of all the drugs everyone has mentioned and see if I can get info - it would be nice for me to be able to help others for a change. I sometimes feel like I ask all the questions and rarely am able to help others on TP.

Thanks for your comments. Much appreciated.

Alison
x