Clinical Research Study for PSP

[teresa1988]

Hello All,

Is anyone out there participating in a clinical research study to assess the efficacy of the drug ABBV-8E12 in PSP? If so, I am interested in knowing if positive results have been seen. The study is being conducted at a number of sites in the US, Australia, Canada, France, and Italy. More information is available at Clinicaltrials.gov.

Thank you for your replies.

Teresa

[enjoysalud]

Who is the pharmaceutical company and/or university involved?

Thank you, Margarita

[enjoysalud in reply to enjoysalud]

This is enjoysalud....I found the description of the study, criteria, etc. Thank you....no need to answer first inquiry.

[teresa1988 in reply to enjoysalud]

Sure. Are you in the US?

[Donnasue]

My husband has been in the study since May,2016, and we are certain he is receiving the actual medication as he started showing improvement almost immediately. There has been no further progression of the disease and his eye movement, swallowing improved and his “alien arm” became less rigid. After every treatment he feels more energized. We believe it has stopped the progression, we can live with the disabilities he has and may not reverse with the treatments.

[teresa1988 in reply to Donnasue]

That is wonderful!

Is he still receiving infusions? If so, how many more will he receive? The study I'm familiar with is offering only 12.

[enjoysalud in reply to Donnasue]

Donnasue, I just sent you come questions on another posting from you. I found the answers to most of my question here.

Only still curious on the improvements you have seen in John since he first started the infusions. If you have time I would like to be brought up to date on John. He looked FANTASTIC in the photo of you and him.

Thanks, Margarita from Los Angeles

[Jpc1335 in reply to enjoysalud]

Hello Margarita, most of the changes happened within the first two months which according to the report the tau ganglia (tangles)were released from the brain after the first infusions. I believe they stated 92 to 97 % at that time. For John the first thing we noticed was his eyes could once again move up and down and side to side. (He could read again) then the facial expression was back to normal, no longer the frozen Parkinson grimace. His erratic anger and confusion lessened as well as the apathy.

His left arm is still compromised, but the rigidity has relaxed a little and he can grip with the hand if he can touch the rail to get out of bed. The parts of the brain damaged by the tau probably won’t come back, but the disease has not progressed from the first infusion. Only wish we could have gotten in the study sooner, but are thankful for what he can do now. Walking is still a challenge, as falling is always a possibility. He uses a weighted walker and a wheelchair. He is 83 and I am 79 so will have to have help in the future. Our children have been wonderful, but they need to live their lives.

Was your friend able to get in the clinical trial at UCLA?

It was good to hear from you, thank you for staying involved. Best regards and hugs,

Donna

[enjoysalud in reply to Jpc1335]

THANK YOU!!! Yes, my friend was accepted to the UCLA BIOGEN trial, not the one that John is receiving (ABB).

I am soooooooooooooo happy to hear about John's progress.

Blessings, Margarita

[Jpc1335 in reply to enjoysalud]

Thank you

[Donnasue]

We will be fished with the trial in June. He will have received 14 infusions by that date.

[teresa1988]

I'm sorry to keep asking questions, but do you know if the study he's in is the one sponsored by AbbVie or Biogen?

[teresa1988]

I'm sorry........went back and re-read previous answers, and you have already answered that question.....AbbVie.

Thanks again!

[Donnasue]

After the 12 infusions there will be a comprehensive assessment of his health and another MRI and lumbar puncture (sounds much worse then it is no pain) after that time he will continue on the medication for the rest of his life. There are two different tests going on with the two drug companies. John’s happens to be Abbie from what I understand they are similar drugs.

Donna

[maxycol in reply to Donnasue]

Thanks for your story. If it's not uncomfortable thing, I want to hear your up to date news from you. Actually, in my country, Korea, there is no clinical test with Abbvie. So maybe I will persuade my family to get in touch with the similar clinical test in japan. If my trial to get the opportunities is not efficient, it is the reason that I live in this life.

Sincerely

[YoungPSP in reply to Donnasue]

I am currently going through the process of being diagnosed with PSP, we have a family history as my dad (71 years old) was recently diagnosed as was my grandfather. I am currently 40 years old and having all the same symptoms as my dad and grandfather, I am very interested in the results from the clinical trial as I am grasping for any type of hope for my dad and myself. I would appreciate any updated information that you could share.

Thanks

[Donnasue]

Please continue your research, I did not think the new trials were to start until June. The hospitals should be looking for volunteers to participate in the trials. Curepsp or your University hospitals should be aware of the new trials.