When An Alzheimer’s Study Tanks

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We got the news last week that the Ralph’s Merck study is shutting down. I got a text from the nurse at Emory to say Ralph should stop taking his blue pill but to come in for the appointment already scheduled for this week—and to bring all unused pills with us.

I was a bit startled. Not sure how I should feel but surprisingly upset. Ralph has been holding steady for so long, and I assumed the little blue pill was at least a large part of the reason. But he has not enjoyed the study. His visits, at least two hours being prodded and tested plus an hour each way to and from, always leave him feeling tuckered out and slightly woozy.

I liked Ralph being in the study. Self-centeredly, I enjoyed have a chance to talk (i.e. whine about Ralph) to the social worker whom I like as a person. Despite Ralph’s complaints, having an excuse to take him for an outing always seems like a positive thing, and gets harder and harder. And I liked that he was being checked regularly, that someone would catch any problem sooner than later.

So many studies are going on with Alzheimer’s, and there is always a new breakthrough on the horizon that seems to fizzle. The reality is that I didn’t expect this study to make a difference for Ralph but I was thinking about any children/grandchildren who may have inherited the gene. I figure whatever happens with Ralph is going to happen at this point and we’ll deal with it.

The nurse and I agreed that Ralph is probably not likely to participate in other studies. For one thing, his inability to have an MRI locks him out of most.

What saddens me, I guess, is the sense that another door is closing.

8 thoughts on “When An Alzheimer’s Study Tanks

    1. Oh yes, I cannot live without my moaning! As for outings, we now have a lovely round of dental appointments that will fill our lives although for some reason, Ralph is not thrilled about having his gums scraped.

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  1. Hi Alice –

    Sorry to hear the news. I believe there was at least one other drug pulled from Phase III trials earlier this year, and Pfizer announced that it has halted all of its Alzheimer’s research. Not looking good, particularly for drugs based on the amyloid hypothesis. Perhaps drugs to reduce tau tangles will work out better, although they’re further back in the pipeline.

    So in the meantime Ralph and I can try to keep holding steady, as you put it, by doing some things that have been proven to delay the progression of symptoms: Aricept, good diet, a little mental and physical exercise, clean living. Hopefully, this will buy us some time until something that really works shows up.

    But the clock is ticking. At least in my view, given that Big Pharma is striking out, it’s worth trying some things that look promising but aren’t proven just in case one of them pans out.

    In my own case, I added Trazadone last fall. Although my neurologist prescribed it mostly to reduce some intense dreaming incident to Aricept that was interfering with my sleep – and it has helped with that – I agreed mostly because there is some data suggesting that Trazadone might help delay symptoms. So not proven by any means, but given that Trazadone has a well-established safety record and few side effects, it seems worth a try.

    Even further at the edge of accepted treatment for Alzheimer’s is medical marijuana. I believe the most established benefits of medical marijuana for AD patients are to reduce anxiety and aggressive behavior, two still minor but worsening symptoms of mine. However, a little basic research done by the Salk Institute suggests (but definitely does not prove) that THC might have neuroprotective qualities, and slow or even slightly reverse the formation of amyloid plaques. Medical marijuana is legal in my state, a doctor has prescribed it for me, and I expect to visit a dispensary for the first time within the next few days.

    I’m not suggesting that anyone follow my path. We all have to make our own decisions about what’s worth trying and what’s just junk science. However, many drugs have failed in the past 18 months as my symptoms slowly have worsened. In the context of this string of failures, I won’t do nothing and, ignoring the recent record of failures, just hope that a “proven” new treatment or cure will be found before I forget my own name. I have to try something.

    Good luck to you and Ralph as you decide where to go from here.

    Heading Somewhere

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    1. Thanks for writing. I had heard about the potential of medical marijuana, which is not legal in my state and not likely to be any time soon. But Ralph and I are lucky in that he is holding steady so far. Good luck to you too.

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      1. I started Aricept in late January 2017. Both my wife and I thought that I at least held steady, if not improved slightly, over the first half of last year. After I started Trazadone in September, the feeling of constant fatigue lessened noticeably, presumably because I started getting more restful sleep. However, we’ve both noticed some subtle changes (e.g., a tendency towards verbal aggression very unlike me, minor issues getting lost and using the phone, the return of fatigue) that suggest the Aricept honeymoon may be over and symptoms are progressing again. My boss also pulled me aside for the first time to discuss an incident that she felt was AD-related. So although the change isn’t dramatic and may level off again, I’m not sure that I’ve been holding steady over the past few months. Hence, my belief that the clock is ticking and my growing urgency that I MUST DO SOMETHING! I’m sure you and most of your followers have all been there. So good luck to all of us!
        Heading Somewhere

        Liked by 1 person

      2. The reality is that while the end result may be the same, the course of Alzheimer’s follows different curves for each person. I do remember that Ralph’s initial improvement with Aricept felt like a Godsend, but then he plateaued. On the other hand, he has held more or less on that plateau–holding steady with his memory but perhaps losing energy and mental involvement. Your sense of urgency is completely understandable. I so, so respect your self-awareness and honesty.

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