Update on the Stanford study

More Than Placebo May 26, 2017

Background In December 2016 I started the Stanford Young Plasma Study. I had eight infusions of blood plasma taken from 18-25 year old males as part of the Phase I study to see if this procedure was safe for humans. As I was the first Parkinson’s patient in the world to have such infusions, no one really knew what to expect. The hope, of course, is that young plasma will somehow be able to mitigate the course of the disease, or perhaps even reverse it. I had three extensive on and off medication batteries of tests, including UPDRS part 3, 1) in January prior to the infusions, 2) after Valentine’s Day at the end of the infusions and then 3) 5.5 weeks later. The PI performed the first round of the off medication testing and then other staff (4 or 5 in all) performed the other tests. We were thrilled that my test scores went from 28 off meds and 13 on meds prior to infusions to 14 off meds and 10 on meds at the end of the infusions and 14 and 7 after 5.5 weeks with no infusions. Infusions? Placebo? Who knows what is going on? I can report that I feel much better in nearly all aspects of my Parkinson’s and the effects continue.

Update This week I traveled to Baltimore for my third year of participation in another Biomarkers research trial, this one at Johns Hopkins. I was more than a little eager to see how I would score on the same UPDRS test at JH. The PI tested me a year ago on the UPDRS and tested me again May 25th. She self-reports as a “hard scorer”. I refused to tell her about Stanford until after she had completed the UPDRS test, now 3.5 months after the infusions. I scored 19. More significantly, she told me that last year I scored 28 using the same test and the same person giving the test, a drop of 9 points! Later she told my husband that when I walked into the office she was startled at how much better I looked from last year.

I think we can safely say that this is more than placebo. So far we have N=1. What is there about me that I respond so strongly to the infusions? Is this a combination of cycling, dance, medicine and infusions or is something else going on here? Questions I can’t answer. I can only be happy and grateful and hope the trial will become available to others soon.

12 Replies

  • Thank you for that glimpse of fresh hope and all that positivity :-)

    Keep us informed.

  • I am always delighted by good news and that was a delightful report.

  • That is great news that you continue to do well and are not seeing dramatic regression.

  • The only person I've heard from reported that she had a negative response to the infusions, that she became more ill and doesn't recommend the infusions.

    This raises a lot of questions as to why I am responding one way and she is the opposite.

  • Very happy to hear that. Any news on how other recipients fared?

  • great news... keep it up! ( I really mean down UPDRSwise)

  • Thank you for sharing your experiences and encouraging news with us.

  • Thank you so much for participating in the blood infusion trial. I guess your good result may mean that PWPs will simply be given a series of blood transfusions to help them fight PD. Hope is a good thing and gives me courage.

  • Very interesting. Are the infusions the only parameter changing in your life.were you cycling and dancing and taking the same meds along the time of the trail.

  • The infusions were the only change. All other parameters stayed the same.

  • Any news on when they will start Phase 2 testing?

  • First they will have to collect and analyze the data from Phase I. Then, if it is warranted, they will seek funding for Phase II and go through the set up processes for that. They told me they expect to finish gathering data for Phase 1 by the end of 2018. If the results are particularly good, perhaps they will speed things up a bit, but the research process is slow and deliberate, as I think it should be.

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