Does anyone have any results from a Clinical Trial they can share?

[Kristin447]

Hi, my husband, 53 years old was Dx with probably PSP in July 2017, symptoms began in 2015. We are in the Boston area but will travel to Columbia University Medical Center in NY this Monday for a screening visit for the ARISE Abbvie study. I searched the site and saw that others have been in clinical trials and saw a post about some positive results. I just wanted to see if anyone has some updates to share on any results or comments etc about their experience. Thanks so much. Prayers and Hugs to everyone on this site!

[katras]

Hi Kristin,

I am currently in the ABBVie clinical trial being done at Oregon Health Sciences University in Portland,OR. As I understand from the coordinator of the study, I am 1 of 3 people in the area who qualified. I have had 3 IV’s thus far and will have my 4th next week all with no side effects. I don’t notice any change thus far, so I have my doubts that I’m receiving the drug. I have been assured that I’m guaranteed the drug at the end of the study. I am a firm advocate of this trial because I saw a post in the spring from a woman whose husband was in the study and he had improved in about 4 different areas.

My heart goes out to you & your husband because he is so young to have been diagnosed with this horrible disease. I am a 74 year old woman, who has lived a full, active life & this has shrunk my world beyond belief. I am so glad that you found this blog because the people are so helpful with their information as to what drugs are helpful for various conditions and just to share frustrations, whatever they may be.

I saw your earlier blog about the bathroom remodel. I have no experience with the tub you mentioned, but we are in the middle of a bath remodel because I have found that the “lip” into the shower was a problem. The new shower is barrier free & I got a lot of ideas on Pinterest. My main symptom of Psp is my balance & mobility. Therefore, my husband & I moved our bedroom on our 2nd floor to the main level as the remodeled bathroom will be. I do not use the stairs at all.

I am more than happy to answer any questions you may have about anything & if your husband would like to email me, I would welcome that.

Kathy

[Janet5 in reply to katras]

What a treat to hear from someone who has the illness rather than the family member!

[ketchupman]

I've only heard positive things of this trial, but nothing from anyone firsthand. I actually tried to enroll my wife in this trial in November 2015, when is was still in Phase 1. We flew to Dallas, Texas and met with one of the doctors at a study site (which apparently isn't participating in Phase 2). Unfortunately my wife didn't qualify as she didn't meet their eligibility criteria. Her mental capabilities were not there (I think she scored about an 11 on the mini-mental test and I think they needed at least a 15) and she wasn't able to take a few steps without falling. I tried appealing later to ABBVie to give her a dose outside of the trial on a compassionate basis, but wasn't able to convince them to do so. My wife passed a few months later in July 2016. She was only 54 years old. I continue to monitor their progress and pray this is "the one". My wife also participated in a trial back in 2012 with a drug called Davenutide, which later was determined to be ineffective in fighting this horrible disease. God bless you and will be praying for you in this important decision to participate, which could help find a cure for all of mankind.

Ketchupman

[easterncedar in reply to ketchupman]

Hey, Ketchupman! It's been a while. How are you doing, my dear?

[ketchupman in reply to easterncedar]

Hey EC, I'm doing OK. Still missing my bride after a little over 2 years since her passing. Bought a beach condo on the Alabama coast, but returned to KY for the summer and living with my dad. Have extended my stay up here and taking care of him, as he has been showing memory issues and having a few falls. Has had numerous tests and they ruled out Parkinson's and Lewy Body and Alzheimers. But they do think he has some form of dementia. Trying to convince him to come live with me down in Alabama during the winter. He'll be 85 next month. So it looks like I've gone from being a caregiver to my wife and now to my dad. But that's OK. I love him very much. But I'd give every cent I own to have my wife back and take care of her for just one more day. Hope you're doing well and living life to the fullest. Take care!

Ketchupman

[easterncedar in reply to ketchupman]

So similar. My caregiving continues, too. I am very happy to have my mother, 91, living with me now, just since last week. Her mind is fine, but her hearing, sight, heart and legs are failing. Since my house still has the lift, ramp, grab bars and such, I won at least the first round of the (loving) competition with my sisters, and she may make my place her base. We shall see. Fall is lovely here, but winter is a challenge, and the southerly sisters may win round 2.

I miss my sweetheart terribly, but keep going, as one does.

Thanks for writing.

Best wishes, ec

[Kristin447 in reply to ketchupman]

Your dad is so lucky to have you! My mom is 77 and has dementia also. Luckily my dad is still around and they live close by. I have to stop the nightmare thoughts of my mother and husband both declining at the same time and all the care that will be needed....but I am lucky I have a brother and sister to help...

[Kristin447 in reply to ketchupman]

Hi Ketchupman, I'm so sorry for your loss, your wife was so young... its just sad beyond belief. Does it seem to be that the younger you are to get PSP the more aggressive it seems to be? With her age it just seems so unfair to not give her the chance to participate. I really appreciate your reply to me and I hope I can offer some good news over the next year with this trial. Although I'm trying to not get my hopes too high.

[daddyt]

I'm currently enrolled in the Biogen Study, too early yet to evaluate results , however, none of the trial subjects have had any negative side effects.

Tim

[Malattia in reply to daddyt]

Hello daddyt,

Where are you doing this Biogen Study? Best of Luck to you!

M.

[daddyt in reply to Malattia]

London, On Canada

[Kristin447 in reply to daddyt]

Hi daddyt, we had a screening visit for a Biogen trial in Boston but 3 days before they called to say it was full. I was so upset, then the Abbvie came around and I'm praying he gets into it. So many people will say "Oh wow you have to go ALL THAT WAY to NY", they have no idea how insignificant a 4 hour car ride is when there is a little bit of hope involved in it!

[daddyt in reply to Kristin447]

Its definitely worth the extra time.

Tim xx

[Malattia]

Hello Katras, and Kristin ,

I live in the Boston area but I don't know of any medical studies. Can you both let me know more about your experience. I would like to see if they can help my Mom. Kristin, I am sorry to hear about your situation since your husband is so young. My mother is around the same age as katras and she has much of the same symptoms. You can send me a private message and I will respond if you have further information about the studies.

Katras and Kristin, best of luck to both of you!!

Malattia

[cinkerfoot]

Hello.

My mother (82), also diagnosed in July 2017, and I participated in the Abbvie study. We traveled to the Phoenix campus of Mayo clinic. Our screening appointment was Nov 2017, and her first infusion was in Jan 2018. She had 8 infusions, but we decided to terminate our participation in the study in Aug. We don't know if she was getting the drug, but suspect not, as she continued to go downhill especially dramatic since June. In spite of her not improving, or even stabilizing, we actually very much enjoyed our trips and the care we received. It was interesting and rewarding to do this and wish we could have completed our year as she would have then been guaranteed to get the drug, but it was just getting too difficult to travel every month. Her ability to eat, speak and see has been severely affected by PSP and eating out became a nightmare. She had no side effects from the treatments.

Now, since she decided early on that she did not want a feeding tube, she has been placed into hospice. She is still able to eat enough to keep her going, but it is getting increasingly difficult. Amazingly, she is still walking fairly well with a cane (in the house) and with a rolling walker (outside). Who knows? Maybe she was getting the drug and now that she won't be getting monthly infusions she will go downhill even faster. But she has pretty much decided that she has had enough and just wants it to end quickly and as easily as possible.

Interestingly, she has never showed any signs of apathy that others mention. She is very much engaged and interested in what her children and grandchildren are doing and watches the news and has opinions on what is happening (she has to write down her thoughts).

Anyways, I hope you get accepted into the trial and that you benefit from it. Keep us posted! Best wishes.

[Kristin447 in reply to cinkerfoot]

Hi, Thanks for the reply. Its good to hear that you enjoyed your trips for the study, I am hoping we can make it an enjoyable adventure of sorts if we get in. I'm sorry about your moms progression though. I think is great that she is still engaged and opinionated! I miss that alot, my husband was such a big talker and so opinionated and now hes so quiet. I know hes still interested in things like our daughters activities and such, but its so quiet now I find myself babbling to him just to get him speaking!

I will definitely keep everyone posted. Thanks!

[enjoysalud]

Under the SEARCH PSP ASSOCIATION please write in CLINICAL TRIAL INFORMATION. It was a post written by Katras. If you scroll down that to the shares you will come to "DonnaSue1". Her husband was in the Abb-vie clinical trial, and she wrote about the improvement she saw with her husband's (early 80's) eyes, etc. He later got pneumonia, but I think the description of improvement is helpful.

[Kristin447 in reply to enjoysalud]

Thanks so much, I did find that post, its very encouraging! Especially because the only thing my poor husband complains about, and of course the list is endless, is his eyes. He suffers so much from pain and light sensitivity. I've asked so many neurologists and neuro-opthamologists for something to help him and all I get is Over the Counter drops. I don't think he has the double vision though...hopefully that one skips him!

[Rewestcott]

My wife Barb, diagnosed also Jul 17 but with symptoms going back another4 years, applied for the ARISE Phase 2 trial at the Rochester Mayo. With extreme disappointment we were turned down since it was greater than 5 yrs since inception. It was probably our last hope to arrest progression while still being able to lead a reasonable life.

[Kristin447 in reply to Rewestcott]

Oh I'm so sorry to hear that. I was devastated when he got turned down because of capacity from the Biogen trial this Summer but at least I knew he still had a chance at some point for another one. Having hope is so important...

[easterncedar]

Who do you see in Boston for your regular neurologist? We had Diane Apetauerova at the Lahey. I liked her a lot. She was doing trials with CoQ10 and was going to set up a trial of deep brain stimulation, I think, after the CoQ10 trial didn't demonstrate the strong positive she had hoped for.

[Kristin447 in reply to easterncedar]

Hi, we see Dr. Ho at Tufts, and he spoke very highly of Diane Apetaureova. I'm not sure how I feel anymore about the care he is getting, I don't feel like he has done enough, but as we know there isn't that much that can be done.

All that I have done to help him I did on my own with no suggestion from neurologists, i.e. Special gym for movement disorders (Rock Steady Boxing) Accupuntcure, neuro-opthamologists, holistic treatments and lyme disease treatments (a whole other story!) and of course clinical trials to name a few! Not a word was spoken or suggested for any of it. I've already gotten so much more help and info from this site than any dr.

We actually had an apmt to see Dr. Apetaureova for a screening visit for the Biogen trial over the summer but it was cancelled a few days before because they reached capacity. I am thankful we got this other opportunity.

I'm sorry to have read about your husband, prayers and hugs to everyone on this site and I am grateful to have found it.

[Adamxd]

Hello Everyone,

I'm based in France & my mom (64yo) has PSP, diagnosis done in mid April 2019, symptoms noticed since 2015 (eye problems), but now she's weak with instability, swalowing issues, depression etc... difficulties to get off bed, but still walks properly, i sent an email to ABBVIE to enquire about the possibility to take part in their clinical trial in France, the medical cordinator told me on the phone to tell my Dr. to get in touch with the Lab,

Have you been through the ABBVIE/ABBV-8E12 trials ,is it recommended to be part of it ?? did you notice any results

so far,

Thanks for any feedback

Best regards

Hope