Aducanumab

[Donkey Pam]

Hi
I’m fairly new to this...my husband has a recent diagnosis of early Alzheimer’s disease and I’ve been looking at Dementia research and have registered him there. Has anyone else on here been on any drug trials?
I have been looking at Aducanumab. I know that I am still in the ‘shock’ phase of this journey but am desperate to try to find anything to give us more time together.
Thanks
Pam

 

[Kevinl]

If taking part in a trial for a drug that might work meant you then couldn't take the drugs proven to work then, no I wouldn't take part in the trial.
Even if you do take part how can you know you're not in the control group that is given a placebo so are getting no medication at all?
K

 

[Donkey Pam]

That’s so true Kevinl, can you not keep taking Donepezil as well?... it’s a catch 22 situation I think!

 

[Al_B]

Hi Donkey Pam,
You need to get more information from the people running the trial as to what you can and can't take. The other thing to bear in mind is that its very time consuming as you have to keep going to the hospital for tests and appointments. We decided not to join the trial because of that.
Having said that someone needs to do the trials but you do need to weigh up all the pros and cons of taking part.

 

[Nameless]

My husband is in the trial. They told him he could continue taking his medications. Before starting with Aducanumab he had to have been taking them for at least 6 months though. Because he wanted to take part, he didn’t start donezepil then. The trial finished last month, he started donezepil then and continued in the long term trial, where there is no placebo.

 

[Donkey Pam]

My husband is in the trial. They told him he could continue taking his medications. Before starting with Aducanumab he had to have been taking them for at least 6 months though. Because he wanted to take part, he didn’t start donezepil then. The trial finished last month, he started donezepil then and continued in the long term trial, where there is no placebo.

How do you think the trial went for your husband? Do you think it was working?
There are so many trials out there, we have been bombarded with contacts but My husband has only been on 10mg Donepezil for 3 weeks so we are going to wait for a while. How do you decide which one to try for?

 

[PalSal]

My husband was on a trial about 10 years ago. He got the active ingredient. The drug was never brought to market (and a few people died) but I believe that it delayed his onset. I think this drug delayed the onset of the usual strong symtoms of the disease in those who get it very early in life. But I am not a doctor or a scientist. I can only go with my gut. My husband, I believe benefited from the trial and if it helped science to move forward for our children, all the better.
With the trial over a two year period he had to have MRIs, lumbar punctures and additional doctor appointments. He was very young so a good candidate for study...fit and healthy physically. It is more difficult for the very aged to participate in these trials and they are not ideal for the process.
Someone must participate for a cure to be found.

As I understand it, most of the studies are about preventative treatments rather than restorative. So, the less symtematic the person is the more desirable they are for study. Also, once you have been on one study you are less desirable for to another study, as it would be difficult to attribute and differentiate benefits and efficacy of the different treatments.

 

[Nameless]

We didn’t have many trials to pick from (we live in Switzerland). Our first Trial was short (a PET-Scan that was more detailed than his first one). After that he joined the aducanumab one. About the first year we thought it might be working, but the past half year the decline has definitely picked up. Now he just managed to qualify for the long time study. I’d wager that he had the placebo. Now he’s had the first infusion last week and he seems to be more tired, but it could also be because of donezepil, which he started a few days earlier.... I think there are approximately 10-12 people in the trial at the clinic where he is. We met 2 other ones (both early onset) at an Alzheimer’s meeting. Both couldn’t continue in the trial (scores on the tests to low). Both thought, like we do, that they’d received the placebo, but that would be a huge coincidence. So I don’t know what to think, but we’ll continue for a bit and keep on hoping. Hope to have helped you a bit.

 

[Roseleigh]

I'd go for the Aducanumab if were you as it's one of the more promising drugs, but you do realise there is a high risk he'll get the placebo, not sure if one third, or half for this trial?

I looked into it for my husband but a year ago it was closed to anyone beyond the prodromal stage, but now they have opened it to early stage AD again.

We opted for the liraglutide trial instead, but it hasnt helped, he's got worse over the last year. I've been approached by an Aducaumab centre recently, but I suspect he is now a bit too advanced, and he still has to finish off the liraglutide one. The way I look at it though, if one of our children get it, we have helped by participation. We should all take part in trials if we can manage it.

 

[Nameless]

It’s 1/3 placebo, 1/3 low Dosis/ 1/3 higher Dosis. I know 2 other participants, beside my husband and they all have the feeling that they received the Placebo. To be honest we have the same feeling and donezepil doesn’t seem to make much of a difference either.