Reminyl XL

Sunlight

Registered User
Feb 12, 2007
55
0
My mother is on Reminyl. Touch wood so far it seems to be working ok for her. People are more likely to have side effects if the strength of the drug is increased too quickly.
 

Skye

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

My husband has been on Reminyl for seven years, with no adverse effects. But it doesn't work for everyone.

Have you noticed side effects?
 

Norfolklass

Registered User
Feb 14, 2007
16
0
Norfolk
Thank you Helen(Amy?) for that link will have a study when I've stopped work.

I'm pleased Sunlight that your mum is not having any side effects.

Hi Skye (Hazel), gosh 7 years, are you finding it works, has it slowed the dementia right down? Over the 7 years have you noticed any deterioration?

The doctors prescribing my fathers drug have changed the drug from Aricept (I believe it was) to Reminyl. They have altered the dossage of the Reminyl drug as well, both up and down. My concern is that when they have him on the stronger drug, he is certainly improved, not so repetitious or confused but seems unable to reign in his temper. I'm trying to identify if its the alzheimers causing this or if the drug is exacerbating these incidents. May I be awfully cheeky and ask how old your husband is? My dad is in his 80s.

Also general question - have people noticed that the relative who has altzheimers had a parent who also had altzheimers?
 

alfjess

Registered User
Jul 10, 2006
1,213
0
south lanarkshire
Hi Norfolkflass

My Mum has dementia, her parents didn't have dementia (maybe, because they died of other causes before they were as old as my Mum, 82)
Her grandmother did have, what at that time was called senile dementia, sorry don't what age she was when the illness was diagnosed

My Dad has Alzheimers, he is 84 and as far as I know no one else in his blood relations had this illness, then again they died at a much younger age, from other causes.

My Mother- in- law has mixed dementia and her father and one of her sisters also suffered.

Alfjess
 

Skye

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

John is 73, was diagnosed when he was 66. He started on a low dose and gradually built up to the maximum. He has been on that ever since.

He had no side effects, and the effect has been amazing. I noticed an improvement in his mood and confidence from the first week. I haven't had any temper or behavioural problems, but that could be because he is a very calm, gentle person (unlike his volatile wife).

His decline has been very gradual, and although we had a spell of double incontinence last year when he picked up the Norwark virus, he is now fully continent again during the day, and mainly at night.

He's very fit physically, and walks the dog twice a day, once with me and once on his own.

He's done remarkably well, even the consultant is surprised. How much of that is down to the drug, no-one can tell, but I'm so grateful he was prescribed it from the start.

In your place I would be prepared to give Reminyl a good try, but watch out for the side effects.

Good luck,
 

Norfolklass

Registered User
Feb 14, 2007
16
0
Norfolk
Reminyl

Hi Alfjess,

Thank you for your input. Sounds like your Dad is the same age as mine. My concern is of course that my dads, dad had dementia/Alzheimer so the thought is, will this also affect either myself (though I am female so perhaps not) but my brothers.

I do hope that society and medicine get their act together to tackle this truly awful disease, which rob people of their loved ones and also the individual of their dignity. They keep saying that we are all going to live longer, so lets hope this will result in pressure to bear with something being sorted out! I live in hope!

Hi Skye,

Thank you very much for getting back to me. 66 was very young, how very sad. Having said this it sounds like your husbands quality of life is a good one. Dad is not the man he once was, made worse sometimes by the glimpses of how he used to be coming through. Though having spent some time reading other people experiences of this disease, it seems we are in the early stages. Dad has always been a bit hot tempered, a bit like his daughter! Though it never lasts long for either of us. I'm just concerned that he no longer appears to apply the breaks, and as my mother is his main carer and also in her 80s.............................well need I say more.

Ok back to cheeky mode and perhaps I should put this out as a general 'thread' once I've figured out how to do that!

Is your husband tested? Dad is put through the hoops about every 3 to 6 months. He has to take mental ability tests, as well as long chats! They then re-prescribe the Reminyl. I dont think this is necessarily a bad thing, but I wonder if this is the norm?

Norfolklass
 

Norfolklass

Registered User
Feb 14, 2007
16
0
Norfolk
Hi Nada,

Still on line though will be off in a few mins as I have to go out.

Thank you for your input, I have checked your profile and see that you have a professional interest in this subject.

Will study the link you gave me when I have a min (currently up to eyes and ears with work!!!).

Dad has exceptionally low blood pressure, which follows that this could also affect his input into his brain, as it has done his legs. Think will post a new thread about this to see if it throws up any interesting information. Will also ask mum if she remembers if grandad had low blood pressure.

There must be some way to get to the bottom of all this!

Norfolklass
 

a_daughter

Registered User
Jan 30, 2007
18
0
South Buckinghamshire
That's comforting Nada.

My mum has dementia and so did her mum. I think they developed it at about the same age (mid 70's). My nan died at 78, but my mum is now 82 and the disease has progressed along and mum suffers much more than her mum did.

My sister and I had already accepted that we probably had about 20 years of good mental health left! So, thanks, your post was appreciated.
 

Skye

Registered User
Aug 29, 2006
17,000
0
SW Scotland
Norfolklass said:
Ok back to cheeky mode and perhaps I should put this out as a general 'thread' once I've figured out how to do that!

Is your husband tested? Dad is put through the hoops about every 3 to 6 months. He has to take mental ability tests, as well as long chats! They then re-prescribe the Reminyl. I dont think this is necessarily a bad thing, but I wonder if this is the norm?

Norfolklass

Hi Norfolklass

John used to be tested every six months, but he hasn't been tested for about three years, as his communication skills are so poor. The consultant said he is happy to go by how John presents, and what I tell him.

Don't worry about asking questions, we have the option of whether or not to answer!
 

alfjess

Registered User
Jul 10, 2006
1,213
0
south lanarkshire
Hi Norfolklass
My Dad takes Aricept and it helped him to be more socially interative when he was first prescibed it, although it didn't do much for his memory. He is assessed every six months and as I understand it, as long as it is helping he will still be prescibed Aricept.
As to worrying If I will get dementia, who knows, but if it is hereditary, then I have twice the risk, but it is not worth worrying about

An old scottish saying is "Whit is fur ye, will no go by ye" (sp)

In other words, what will be, will be and there is nothing we can do about it, except try to enjoy our life
Alfjess