Clinical Trial

[Bergenser]

I stumbled across this recent article about a new clinical trial - will be asking about it on our next clinic appointment

clinicaltrialsarena.com/new...

Hopeful that prevention and cure will be found

🌻🌻🌻🌻🌻🌻🌻🌻🌻🌻🌻🌻🌻🌻🌻🌻

[mimikhan]

Dear Bergenser, my husband is 61 and diagnosed PSP in 2020.. very poor balanced with heavy fatigued. Can he participate in the trial if possible please? Many thanks

[Bergenser in reply to mimikhan]

I'm so sorry I'm just a carer for my husband, I don't have any influence over participation in trials 😔. I think it is worth you asking your husband's specialist/ neurologist whether your husband might be eligible.

My husband has participated in one clinical trial already (the NORAPS study) through the research centre in Cambridge/Addenbrooks. Trials give hope even if there are no guarantees. I feel positive about this one as it seems the drug they are testing was approved for treating ALS.

Best wishes 🌻🤗

[mimikhan in reply to Bergenser]

Thanks for replying dear one. appreciate greatly and i definitely will ask our neurologist next time when we have the appointment. Keeping our hopes for the best. Will let everyone know how we get on. Love & blessings always

[Licquoricelover]

I too saw this trial and have enquired with UCLH London where my husband is currently treated to see if he would be eligible. This is one of the proposed sites under Prof Huw Morris. I have not had any response as yet but I am hoping my husband might meet the criteria. I will post if we are successful

[mimikhan in reply to Licquoricelover]

I pray all the best for you dear.. and look forward to your post with the positive response.

[Licquoricelover in reply to Licquoricelover]

Thank you.

[Auntbuzzy]

we recently traveled to Memphis with high hopes of getting in on this trial. I would strongly encourage you to pursue it, as it seems the most hopeful I’ve seen. Sadly my husband was ejected because his disease is apparently too advanced according to the PSPRS.

I would still like to know if it could possibly be prescribed “off label” since it has been approved for treating Lou Gehrig’s disease. I intend to request this from our neurologist when we see him in March. We would be willing to sign away any rights… what other hope do we have?

Please let us know if you go through with it

[mimikhan in reply to Auntbuzzy]

Blessings Auntbuzzy for your advice and support. thanks of bundles.please keep us in your prayers. I hope all goes ok for my husband as well for everyone whose going through this terrible journey.. May God give us the strength with his mercy. Aameen

[Quincy31]

My 76 year old husband is in the Amylyx trial called the Phase 3 Orion Study. He began on March 28, 2024 in California. It involves a powdered drink taken one hour before a meal and a one hour wait after. We started screening for the trial around January which included cognitive tests, extensive questionnaires, ekg, blood draws, urine tests, mri and a lumbar puncture, etc. They are looking for people in the early stages of their PSP diagnosis and caregivers must be involved. We are on the third month with three office visits thus far and at the latest visit on June 18th, the doctor said about my husband’s condition: He appears to be stable, walks well, passed the cognition test, and has had no falls in this three month period. Currently, his eye focus is the biggest challenge. His upper and lower eye tracking hasn’t seemed to change. He appreciates help with small motor coordination such as dressing and cutting up meat although he can do it himself, but it takes time. I’ve noticed he appears more “present” and he seems to be responding faster in conversations including phone calls, whereas before he wouldn’t talk on the phone at all when his kids called. He also attends a Parkinson’s therapy class three days a week. I can’t say with any certainty if the Amylyx is working, but until something better comes along, I would urge PSP patients to consider the study.

[MurielnDocP in reply to Quincy31]

My husband (72) is also in the trial in Boston. While he has had a few falls - including this morning - he seems to be doing well. I like your description of seeming more present - this is what I am seeing as well. So grateful!

[Quincy31 in reply to MurielnDocP]

Thank you for your observations. I wasn’t sure if what I’m witnessing is wishful thinking or true progress. It helps to know someone else feels the same way. From my perspective, we have no other options yet, so I choose to be optimistic.

[Quincy31]

link to the Orion Study: amylyxpsptrial.com/