My Experience with Dian-tu’s DIAN-001 E2814 and Lecanemab Combination therapy trial

Retrospective – 2023 the year that flew by.

I started my drug trial in April last year and I did not know what to expect. When I started this online diary I was going to be doing so in real time but it’s not panned out that way and probably for the best. When talking about certain parts of your life it is better to have a bit of time to reflect and comment rather than drop unbalanced soundbites because I’m not the only person reading this and just because I say something here doesn’t mean it’s factually accurate. So usual caveats apply

The Dian-001 drug trial is the first of its kind that uses two drugs, the first combined therapy to help prevent or stop Alzheimer’s disease (that I know of).

For me, being less than 10 years from predicted onset I started with the anti-tau mab (monoclonal anti-body) E2814 or Placebo. Then this year (this week even) I start on Lecanemab (no placebo possible – I get the real thing).

I’m excited and scared. I mean it’s a drug with known side effects but we know enough about these drugs to know who’s most at risk. Those with one of two copies or the APOE4 gene as they are suspected to have amyloid accumulation in more problematic areas and those with a huge amount of amyloid to clear (elderly, advances cases of Alzheimer) and those on blood thinners.

People like me, 10 years away from onset are considered generally low risk and Lecanemab is considered so effective that apparently if I get through six months without any side effects I likely won’t get any. Those that do get Aria (microbleeds) usually are asymptomatic of them and they only show up in the scans. I’d still rather not have any though, thanks 😀

The journey with E2814 has been reasonably uneventful. There’s no side effects outside of the dosing days and I feel I have improved despite not feeling I had anything wrong to improve upon but more on this further down.

Firstly though let’s talk about side effects because even though I was told there may be some to expect I’d like to make it a bit clearer because not everything I was told covers the actual living experiences of them.

One of the downsides of Monoclonal Antibody treatments are that the human body can react to them. Known as IRR’s (Immune Response Reaction). You can Google this further but in short, your body doesn’t like what it sees and freaks out. Essentially, it’s an allergic reaction of different magnitudes. Some people have them, some don’t, I do. It’s been supposed that you’re more prone to them if you have a strong and healthy immune system.

For me they materialised as lower back pain and more recently a tingling / numbness across my body as the drug moved through me. There wasn’t much consistency with it either. It is quite a common reaction though but it’s treatable.

I’ve had 14+ infusions of E2814 now and the first went off without a hitch. The second though gave me terrible back pain after 10 minutes and I couldn’t stand up. But, stopping the infusion stops the pain and it doesn’t come back when restarting.

I then had it again on my third visit but it wasn’t as severe, the next one was severe and I developed redness in the skin and felt clammy. At this point it was decided to slow the infusion rate down 50% and it lessened the side effects of subsequent infusions dramatically. Thereafter they always seemed to come on at 10 minutes, disappear at 12 and were very bearable.

What really threw a spanner in the works was around my 12th infusion when as soon as it started I reacted immediately with tingling across the body. This wasn’t expected and surprised me after being so consistent for so long. It made me try and work out ‘why now’ but drew a blank.

As a result I now drop a Piriton tablet as supplied an hour before my infusion starts and at my most recent dosing I had no side effects whatsoever. It’s a common preventative for IRR’s and I’m surprised such a small pill works as well as it does. I personally let it sit on my mouth and part dissolve before knocking it back and also on a light stomach. I want that stuff to work.

What I’ve found interesting about this is that in every case when an infusion was stopped due to a reaction, even if restarted almost immediately there where no side effects. Almost as if it was my body having an initial freakout which started a cascade which, if that’s the case, is reassuring that this is treatable. For me it seems Mab treatment reactions are a feature and not a bug.

Has E2814 helped? Well, I felt that after a few months my problem solving skills were improved and I’m more motivated. Things like completing video games I’d otherwise give up on due to difficulty and frustrations (I’m looking at you Doom Eternal and Super Mario World) are definitely getting more play time. Also, life seems a little bit simpler in an unquantifiable way. I feel my cognition is testing better but only those at Dian know if my scores reflect that. My scores were good anyway so it’s hard to say if there’s much difference.

There’s also the placebo effect. I know I’m on the cutting edge with drugs that are designed to prevent Alzheimer’s disease. That knowledge is powerful to wield so I’m guarded from being overly optimistic. With a disease that can take 30 years to manifest I’m surprised if I’ve omproved that much that quickly but I can only say how I feel I am.

I’m looking forward to the rest of 2024 and what it may bring, so long as it’s positive. Last year was hard, I lost my Father to dementia, my Stepmother to Pancreatic cancer and my mother had a stroke.

It’s hard to be balanced and fair to yourself with so much going on around you but this trial is a point of positive focus for me and it’s given me utility and purpose.