Clinical Trials For PSP

[YoungPSP]

I am new to the site and currently going through the process of being diagnosed with PSP, my father has also recently been diagnosed with PSP. I am 40 years old with young children and unfortunately I am well aware how this disease effects not only the individual but the entire family. I am very interested in the clinical trials for ABBV-8E12 and the results, has anyone participated in this trial? Any feedback would be greatly appreciated, or feedback regarding any other clinical trials that have positive results.

Thanks

[easterncedar]

Dear YoungPSP, This is an really awful situation, and I am very sorry for what you and your family are going through. I would like to hope that you are not actually going to receive the diagnosis you expect. Where are you?

Peace, Ec

[YoungPSP in reply to easterncedar]

We live in the US in Kansas, unfortunately I believe the diagnosis is inevitable. I had a grandfather that pasted away and was diagnosed with Parkinson's but he experienced a lot of falls and we now believe he more than likely had PSP as well. My father was recently diagnosed with PSP and his symptoms align almost exactly with my grandfather's symptoms and now the symptoms that I am experiencing are very similar but are progressing very quickly. It is difficult to get a diagnosis early in the disease and my neurologist has not dealt with PSP previously and unfortunately there are very few movement disorder specialist in our area. I am very interested in clinical trials before the disease has progressed further and I am passed the point of no return, this is and has been a very difficult and frustrating journey.

[easterncedar in reply to YoungPSP]

Tim, who is in Ontario and writes here as daddyt, has been involved in some sort of trial. For whatever reason, he seems to be doing relatively well. You might want to read his posts.

[cinkerfoot]

Wow. So sorry to hear about you and your father. My mother died from PSP in Nov 2018. We were enrolled in the AbbVie study and traveled to the AZ campus of the Mayo Clinic for almost a year. It was a great experience but either my mom was one of the 33% that got a placebo or the drug just didn't work for her. I have nothing but good things to say about the experience...the nurses and doctors were all great and caring. We totally enjoyed our trips there (we flew from No. CA) and made the most of it until it became painfully clear she was really going downhill. We still don't know if she was getting the drug or a placebo...they say we won't find out until the study is over. She was still able to walk even right up to the end, but she couldn't speak for about the last 5 months, couldn't hardly see and it became extremely difficult to eat or drink. She started the infusions in Jan, 2018 and her last one was in Aug. She went into hospice in Sept and died in Nov. She refused a feeding tube. Her mind was sharp til the end. My mom was 82. Good luck to you.

[YoungPSP in reply to cinkerfoot]

Cinkerfoot,

I am sorry to hear about your mom, this is such a difficult disease. I appreciate the information regarding the AbbVie study, at this point I am clinging to anything that provides even a glimmer of hope. It's nice to hear that you and your mom's experience at the Mayo Clinic was positive, I have an appointment at the AZ campus in April. Thanks again for the information, in a very short period of time this site and it's members have provided a lot of great information and insight, I feel very fortunate that I found it.

[cinkerfoot in reply to YoungPSP]

I hope you get the two Erica's at Mayo! Erica Boyd was our nurse and Dr. Erika Duncan-Driver (or something like that) were our two main contacts. Both are incredible. Tell them Cindy and Lorraine (my mom) say hello. They know my mom has passed away. I sincerely hope that it helps you. I was torn between thinking she wasn't getting the drug (because her speech and swallowing continued to get so much worse) and maybe she was getting it (because she was still very mobile and spry). Keep us posted on your journey.

[YoungPSP in reply to cinkerfoot]

Thanks so much for the well wishes, I will definitely try to find the two Erica's

[enzo501]

Yes ...wife took part in abbvie trial ...both at UCSF and then transferred to Denver....when they started it here ..much easier and close to home ...rather than traveling so far .

I can tell you that NO ONE that I engaged with had any real obvious pluses or minuses.We talked to at least 8 people in the study with no definitive results ,and I am sure that not all of them were taking the placebo.....My wife had PSP for 6-8 yrs she passed recently..still waiting to hear about results for phase 2 ...Clinic in San Francisco was awesome ..in Denver it was a joke .....I hope your diagnosis is negative ...I have nevr heard of a 40 yr old with this disease ....If you and your dad both have it it would be extremely unfortunate BUT should give you a high priority on the studies that are available ...my heart goes out to you and good wishes in the fight as well...jeff

[YoungPSP in reply to enzo501]

Jeff,

Thanks for the information, I am sorry to hear of your wife’s passing, this is such an unfair and nasty disease. We are going to exhaust all options regarding clinical trials, my Dad has gone down hill so quickly in the last 18 months and I appear to be just starting the same journey. The impact that this has had on our family is immense, I’m hoping for a miracle for both of us. Thanks again for the reply, the people on this site have been wonderful.

[katras]

I am devastated by your diagnosis— you are so young to have to face this. I am also a Psp patient, diagnosed in May 2017. Also I am in the Abbie trial at Oregon Health Sciences Center in Portland, Oregon. I do not know if I am receiving the drug & will not until January, 2020, but will begin receiving the drug in August because I began the trial in August. I feel my path is different from a lot of patients because my movement has been affected but nothing else so far. I am using a walker 24/7 and have fallen plenty of times but so far have not been seriously hurt.

Please look up Clinical trials online & you will find the locations. By the way, the neurologists here are wonderful & my husband & I are both mightily impressed with their compassion, skill, and knowledge.

Best of luck to you & please keep us updated on your path.

Also, if you have any questions, don’t hesitate to contact me.

Kathy

[kandk in reply to katras]

Kathy, my husband Kurt is a PSP patient. We live in Scappoose. Are you a participant in the local PSP/MSA group? We have not explored the clinical trial as he had previously expressed not wanting to do that. I am amazed to keep learning of more people afflicted with this disease in our local area. My heart goes out to all of the wonderful folks who post on this site. Hugs, I am a Kathy also.

[katras]

Hi Kathy,

Sorry to hear that your husband has this disease. Can I ask where he goes to see a neurologist or who diagnosed him?

We did go to a PSP/MSA meeting in N Portland a year and a half ago. There were only MSA patients there and we have not returned.

The clinical trial is something I wanted to do because I had heard about positive results on this blog. I do not think I’m receiving the drug because I am progressing, but as I stated in a previous reply, I will receive it in August. I can only hope that I’m not so advanced at that point that it will have positive effects.

You mentioned the increase of this diagnosis in this geographic area— I’m not aware of that, but I’m sorry to hear it.

This site is a godsend. I look forward to reading it every day. I welcome any further questions or remarks you may have.

Kathy