Do you know of any downside to dementia drugs?

[kee]

I've been reading about the drugs given for dementia and people say their experiences of them are either positive or neutral. Has anyone had any bad experiences using them or know of anyone who has?

Are drugs only applicable to one sort of dementia? My mam probably has mixed, they weren't sure.

Also, is there anything else that can help? I know there's a lot said about vitamins but that all seems a bit tenuous. Sorry for the probable repetitive nature of my questions, thanks.

 

[Grannie G]

There are probably many negative experiences of side effects of the dementia drugs. They did not agree with my husband who had very dramatic and upsetting reactions..
But I was always grateful we had been given the opportunity to try them. At least we had the chance so would never be resentful they had not been made available.

 

[lesmisralbles]

If I am heading to be banned, this is the moment

I shall start with, we want to put you on a trial.
OK, going of the point a bit with mums trail for her eyes.
The Doctors needs so many to start a TRIAL. She will not be going on this one. Its OK, mum, agreed. They could not get the young uns to go on this one. Inject a cancer drug into mums eyes, a drug that reduces veins in a bowel cancer patient, think it might work on eyes. The drug they think works, costs £28,000 for a years treatment, work out the maths. The drud they want to give her ???????. BUT, it might give her a heart attack, it might give her a stroke. I know, have to put that on all the contra indications.

So, N.I.C.E
Said we can all have the drugs. Delay the onset of dementia
Two pound a day ?
WHY ???

Mounting cost of looking after the elderly.

Yes, anything that will keep anyone alive
There is no money to look after us when we get old.

At what cost.

The carer.
Then another load of people worn out by careing.

Cradle to the grave.
**** off, (sounds like hiss) do not make me laugh.
I shall be looking after Mum.
Untill I drop dead.

Job done Another one bites the dust
Barb

 

[TinaT]

When I was in Spain, I had to pay half the cost of the Rivastigmine(Excelon) and the Spanish NHS paid half the cost. It was quite an amount to find each month, particularly as I had to give up work to look after Ken. I also had to make the treck to a nearby town each month to get a special stamp on the prescription so that the Spanish State would pay half.

I was lucky that when we arrived back in England NICE had decided to allow the drug on the NHS so it was a pleasant surprise not to pay anything.

I'm one of the many who cannot say whether the drug has been effective or not. Perhaps by the time Ken was diagnosed the more obvious benefits had already been lost. He did initially have side effects for the first few weeks but his body quickly got used to the drug.

I know that both Barb, myself and so many of us carers would bankrupt ourselves if a drug could be found which would cure this disease. That's where Government monies are desperately needed. Research into effective drugs so that others will not have the misery we have suffered.

xxTinaT

xxTinaT

 

[Sandy]

Hi kee,

My mother-in-law (MIL) is on Aricept and has had no side effects. It has made a tremendous difference to her mood and memory, though after 2.5 years, those effects are starting to wear off a bit.

People have very individual reactions to these medications. Some people may have a bit of tummy trouble, but it can be temporary. Some people may have hallucinations or slow heart rate and have to be take off one drug, but possibly tried on another:

http://www.alzheimers.org.uk/factsheet/407

My understanding is that with mixed dementia (Alzheimer's + vascular), if the consultant thinks that a medication is worth trying (they are only really intended to treat AZ), then a person can be put on the drug and monitored closely (usually by a Community Psychiatric Nurse).

I can't recall any posts about side effects that did not stop once the drugs were discontinued - so they are usually worth trying.

Take care,

 

[Jancis]

Dear Kee,
Drugs seem to be playing a vital role for some people. But I think we all wish there was an alternative because of potential side effects. It depends on the drugs and the kind of illness being treated. My own personal experience is that anti psychotic and anti depressant drugs such as Amisulpride and Venlafaxine only seem to sedate my relative - he remains unstable and depressed but sleeps more and is so dopey it is hard to know where the dementia starts and the depression ends. But that's only my story. Are you referring to the dementia drugs in the news this last week that have been highlighted? If so then I think these are a special category - Aricept, Reminyl, Exelon, Ebixa for example - these will now be made more accessible to people who might benefit which is good news.

 

[lesmisralbles]

Hello You XX

I know that both Barb, myself and so many of us carers would bankrupt ourselves if a drug could be found which would cure this disease. That's where Government monies are desperately needed. Research into effective drugs so that others will not have the misery we have suffered. Quote Tina T

Yes, I would have bankrupted myself. I would have lived in a tent in a field with Ron. Its OK, he knew that
Monies are needed. I have all of Rons clothes. Not cheap ****. Sounds like ITT with an S in the front.
Can I find an AZ charity to take them ? NO

Research is the problem I have. We, all of us are dying by the thousands each year from dementia.
We are not a priority.
Goverment money, OUR money.
The goverments money is my money, your money. I have worked all my life.
Why do I bother ?
Because, I shall be one old person, with no NH to go to, there will be no NH, and may I say no NHS.
Might as well put a bag over my head now.


Barb X

 

[lesmisralbles]

No bag over head

Figurative way of speaking.
I intend to live to as old as I can be.
To get as much pension out of any goverment I can.
Worked for it, paid for it.
I might add, I am also paying for all the lazy B who are living off the state.
Get them all to work
Barb X

 

[Laurence]

Our experience with my wife (who has been on Aricept for almost 10 years now) is pretty positive. I would just add a couple of riders...

While she was actually getting used to the medication there was a definite deterioration in her daily living abilities but that was more than offset by the improvement when she acclimatised to them. It was the same when she had to stop them for a couple of weeks - significant deterioration and then recovery, during both the 'stopping' and 'starting up again' phases.

The other is that she has had tummy ache problems and was put on Nexium which seemed to do the trick for a while. More recently she has complained about tummy pains on a regular basis but all the checks, scans, tests have come up negative so it may just be an effect of the Alzheimers so I'm just monitoring it for now.

Hope that helps

Laurence

 

[Nebiroth]

The most common side-effects with these drugs are tummy upsets, things like nausea, vomitting and diarrhea. They are usually mild and of short duration and many patients do not experience them at all. A few will have quite severe reactions and in that case the drug is often withdrawn or the dosage reduced.

Side-effects usually appear quite quickly after starting the drug or increasing the dose, whereas benefits are more subtle and take longer.

The usual method is to start on a low dose for a month or more, followed by an increased dose, with monitoring. This process is called titration. It reduces the liklihood of adverse effects because it gives the body time to adjust.

The reaction to these drugs varies greatly. A few people will respond negatively, with symptoms becoming worse - for example, an increase in anxiety or agression.

In the UK, these drugs are only licensed for use with Alzheimer's Disease. They are commonly used for other dementias in other countries however.

Also, because dementia can be very difficult to specifically diagnose, particularly in the early stages, they may be prescribed if Alzheimer's is a possibility. Some people have more than one type of dementia in which case the drugs may also be prescribed if it is thought that Alzheimer's is in the "mix"

 

[kee]

Thanks all for your very helpful replies. If she is lucky enough to be prescribed the drugs there's then the problem of making sure she takes them, but that's another subject!