End of the LMTM trial/open label

The results in Lancet were insufficient to convince the sponsor of the trial/open label that I have been involved with, so as of February 23, I will no longer be using LMTM as I have no way of getting the drug anymore,

I had experienced some decline recently; short term memory is much worse, some disorientation. It is not yet debilitating and with the help of my sweetheart and friends, I am doing OK. I am still on Donepezil and Namenda, and am looking for other tau therapy trials. (Why the industry is still pushing amyloid is beyond me or my neurologist's understanding.)

Not good news

I was not part of this study group, but nevertheless, these results are discouraging. Alzheimer's Maverick TauRx Tries To Weave Success From Failed Trial The results of my group (TRx-237-005) will be out 4th quarter this year, but I doubt FDA approval given the failure of this group. In another article, Experimental Tau Protein Drug Tangled Up in Late-Stage Alzheimer's Study Failure, "Our overall opinion is that this was a negative study," said Dean Hartley, director of science initiatives at the Alzheimer's Association. "No difference between LMTX and control on cognitive and behavioral changes falls below FDA's regulatory requirements for approval of an Alzheimer's drug," Hartley added.

I have no idea how long the open-label I am on will continue.

8/4/2016 update: After meeting with my neurologist, we agreed that I would continue with what I have been taking (LMTX open label, namenda, donepezil).

He confirmed stable test results since I began the trial, and also agrees with me in  not trusting the 15% test results from Slovenia as adequate proof to change to  mono-therapy. He and I both hope LMTM will end up being approved, but if not, there are other tau inhibitor therapies in the works.

This really great news....YES!!!!

Mayo Clinic Study of Thousands of Brains Reveals Tau as Driver of Alzheimer’s Disease

Mayo Clinic Study of Thousands of Brains Reveals Tau as Driver of Alzhei...

Onto the open label LMTX...yesyes...

Yesterday, I started on the open label for LMTX, which the article below says had a 90% success rate in stopping the progression in its Phase 2 trials. I just completed the 18-month Phase 3 trial four weeks ago, and yes, while I still have limitations, I (and my neurologist)  can attest that things have not gotten worse.

I am SO very grateful to Professor Claude Wischik, MD, PhD   and everyone at TauRx and the San Francisco Clinical Research Center.

First Evidence of Potential Efficacy of Tau Aggregation Inhibitor Therapy in Alzheimer’s Disease

All is well

A long overdue update, but the good news still holds: no further decline in cognitive function. If this is as bad as it gets, with careful attention to details ("Be in the Now" is not just a spiritual exercise -- it's a way of getting through each day) and with acceptance of my limitations -- I will be very much OK!

The Phase 3 LMTX trial will be going 'open label', meaning I will continue on with the trial drug (and I am quite sure I am on the 'real thing' based on my initial reaction to it many months ago) until it gets approved and fast tracked through the FDA

Gratitude
     gratitude
         gratitude

New Year, renewed hope

I'm greeting this new year with renewed hope that I am really onto something here with the LMTM Phase 3 trial. At my last session, I did not sense any decline in my cognitive tests (still difficulty with remembering lists and any math past 20 is still gone for me, but nothing is worse). The psychologist stated he saw improvement in 'persistent cognition' and the nurse said she has seen really positive results in many of the participants in the trial.

So it's not just my hopeful Irish imagination!