Donanemab

[Pejic]

I just heard on the news that this has successfully completed stage 3 clinical trial showing an 11% slowdown in loss of cognitive function in early alzheimer's disease.
This was the drug trial I volunteered to join in June 2020, but was screened out because I didn't have enough Amyloid and "the first dose (if I didn't get the placebo) might remove all your amyloid, leaving nothing to measure!" that seemed a good outcome to me, but as I didn't fit the global selection criteria I missed out.
Hopefully the NHS will now move quickly enough so I'll get it before it's too late.
I'd like to hear from anyone who is in line to get it.

 

[Grannie G]

I was a bit concerned about the side effect @Pejic It was a very low number who were affected but I wouldn`t want to chance it at this stage.

 

[Pejic]

Nearly half (47%) of the participants on donanemab (compared to 29% on placebo) had no clinical progression at 1 year (defined as no decline in CDR-SB)

Donanemab treatment slowed clinical decline by 35% compared to placebo, and resulted in 40% less decline on the ability to perform activities of daily living

And 3 lucky participants escaped the results of the damned disease altogether - what's the downside?​

 

[Grannie G]

And 3 lucky participants escaped the results of the damned disease altogether - what's the downside?

What is donanemab?

Donanemab is currently in the headlines as a drug that appears to slow down memory and thinking decline in people living with early-stage Alzheimer’s disease. Here's what we know so far about this Alzheimer's drug.

www.alzheimers.org.uk

However, as with other amyloid-clearing drugs, 24% of people taking donanemab experienced some swelling in certain parts of the brain. This is mostly asymptomatic or only causes mild symptoms, and usually gets better by itself.

Unfortunately, there were three deaths in the trial related to brain swelling and 1.6% of participants had serious symptoms relating to brain swelling.

 

[Chizz]

The news said that the new drug would cost something in the order of £20,000 for a year; and also reported that three volunteers had died during the trials through swelling in the brain. The success of the drug largely depends on early diagnosis - and, therein, I think lies the problem. Firstly, most sufferers in the very early stages think they have ordinary age related memory problems and don't seek a diagnosis; and many are in denial at the very mention of the dreaded "A" or "D" words. Secondly a proposed diagnosis at too early a stage may not confirm A or D. Thirdly, if NICE ever allowed the cost on the NHS, one would have to persuade the Dr to prescribe, and we all know all NHS budgets are somewhat stretched, to say the least.
Thus, it is most likely, in my view, to still be quite a time away.

 

[joerob55]

My very close female friend was diagnosed with Alzheimers in September 2022. She is only 68 and was very physically active before diagnosis. She lives on her own and her short term memory is now quite poor but her logical faculties are fine. Yet she still can't even cope with blister packs and sometimes forgets to take her Donepezil, even with Whatsapp video support from me. I really hope she gets a chance with this new drug soon. She needs it asap in my opinion.

 

[Pejic]

Unfortunately, there were three deaths in the trial

"Unfortunately" depends on your point of view I suppose.

 

[Pejic]

My very close female friend was diagnosed with Alzheimers in September 2022. She is only 68 and was very physically active before diagnosis. She lives on her own and her short term memory is now quite poor but her logical faculties are fine. Yet she still can't even cope with blister packs and sometimes forgets to take her Donepezil, even with Whatsapp video support from me. I really hope she gets a chance with this new drug soon. She needs it asap in my opinion.

I'm with you joerob, I'm in much the same situation as your friend.

 

[Lawson58]

I am cynical enough to think that if the person is elderly when diagnosed and possibly with other ailments, that the sheer cost of the treatment would be a reason why they wouldn’t be given the drug.

"Unfortunately" depends on your point of view I suppose.

And unfortunately, when the drug is offered to lots more people, then the number of deaths will increase too. It maybe only three deaths at the moment but that won’t be the final death toll.

 

[Grannie G]

I`m happy the research continues and it is getting the publicity.

I`m also grateful to those who are brave enough to sign up for trials.

Possible side effects and finance are two massive hurdles to overcome before this drug is available to all, so while the news is good, it doesn`t solve anything yet.

 

[Pejic]

I am cynical enough to think that if the person is elderly when diagnosed and possibly with other ailments, that the sheer cost of the treatment would be a reason why they wouldn’t be given the drug.

And unfortunately, when the drug is offered to lots more people, then the number of deaths will increase too. It maybe only three deaths at the moment but that won’t be the final death toll.

But a speedier death is not such a disaster when you consider the alternative, as documented in other forums here.

 

[Lawson58]

But a speedier death is not such a disaster when you consider the alternative, as documented in other forums here.

Maybe but if a family’s hopes are raised that this drug is going to help but then it ends in the death of a loved one?

At the end of the day, the person might had had a few good years left and their families may have been robbed of that time with them. It is never just about the person with dementia.

 

[Tricot]

Possible side effects and finance are two massive hurdles to overcome before this drug is available to all, so while the news is good, it doesn`t solve anything yet.

Another massive hurdle that current reporting seems not to consider is that these new drugs are for people who are diagnosed at an early stage in their illness. Sadly an early diagnosis is hard to come by. More effort should be going into finding ways to diagnose early. One way which is cost free is for the professionals to listen harder to what people with dementia and their families have to say.

 

[Pejic]

Maybe but if a family’s hopes are raised that this drug is going to help but then it ends in the death of a loved one?

At the end of the day, the person might had had a few good years left and their families may have been robbed of that time with them. It is never just about the person with dementia.

This forum is for people with dementia. A 0.5% chance of a quick death against a 40% chance of a slowing or even stopping further deterioration, seems like a good bet to me. We are not supposed to keep surviving with our brains gone just to satisfy other people.

 

[Pejic]

Another massive hurdle that current reporting seems not to consider is that these new drugs are for people who are diagnosed at an early stage in their illness. Sadly an early diagnosis is hard to come by. More effort should be going into finding ways to diagnose early. One way which is cost free is for the professionals to listen harder to what people with dementia and their families have to say.

A nuclear PET scan is a pretty good alternative to the autopsy which is normally required to confirm Altzheimer's disease. A mildly radioactive tracer introduced intravenously attaches itself to the amyloid and a scan 30 minutes later shows where it is. Additionally, if another scan is done 1 minute after injection it can show the blood flow through the brain.
Unfortunately the tracer costs £400 a shot (mine was paid for by the drug company, but done in an NHS scanning centre), though this would come down if more people were prescribed it; and considering all the people and time involved in the current arcane memory clinic procedures, this would seem a cheaper, faster and more humane approach anyway (even at £400).

 

[Lawson58]

This forum is for people with dementia. A 0.5% chance of a quick death against a 40% chance of a slowing or even stopping further deterioration, seems like a good bet to me. We are not supposed to keep surviving with our brains gone just to satisfy other people.

This forum is not just for people who have dementia. It is for their carers and families who have the responsibility for the person with dementia in their care.

And this drug is not a cure. Whilst it may slow the progress, sadly the end result is still the same.

People who have dementia progress very differently. My husband was diagnosed 9 years ago and is still playing bridge several days a week. There are many things he can’t do but a lot of things he can do. He had a cardiac arrest 10 years ago and I believe that he wouldn’t be interested in the odds as they are at the moment. He is nowhere near needing to go into care. He still looks after his own personal hygiene and cooks his own meals. He takes the dog for a stroll every day.

He is an example, I believe, of why someone may not wish to take the chance.

 

[Pejic]

This forum is entitled "I have dimentia" there are other forums on the site for carer's concerns.
There is no suggestion of compulsion.
Your comments are irritating me, this is the last time i will respond, and I am signing off the site altogether for a couple of weeks to avoid you.

 

[TamsinT]

This thread has been closed as the discussion has run it's course.