PSP drugs trial?

[acorneater]

We were at our support group meeting last Saturday when a fellow carer said there was a drugs trial going on with the results expected at the end of this year,does anybody else have knowledge of this?

Acorneater.

[Hidden]

Look here to see if there is something near you.

clinicaltrials.gov/ct2/resu...

[Kevin_1]

The other way of finding out about trials is to telephone the PSPAssociation. I belive they have some sortof clearing house role.

Good luck

[Christine47]

This article is about the Biogen trial. My husband has been on it for 1.4 years. alzforum.org/news/research-...

[WC309 in reply to Christine47]

My reading to discover clinical trial medications addressing tau based diseases... brought me to focus on Biogen’s BIIB092. The Alzforum article is the most recent update that I have seen. While my diagnosis of CBD

(maybe PSP) was not recognized when your husband’s trial started 1.4 years ago... this is THE trial I would like to participate in. I wish you and your husband the best. May I ask (assuming he has not been receiving a placebo) whether you have seen any slowing of the progression of the disease?....my sense of balance has degraded substantially by the week.....as I searched unsuccessfully for a way to get access to BIIB092. For you and all of us I hope the trial has positive results.

[enjoysalud]

In addition to Biogen, I believe ABB-Vie is also doing a clinical trial. I believe that both pharmaceutical companies are conducting the trials only in the USA (I could be wrong).

Los Angeles, CA, USA

[Cade08 in reply to enjoysalud]

My husband was on an Abbvie study in Tampa Florida starting January 2018. He was only a few infusions short of finishing when he died in December, which I believe was because of being given general anesthesia due to a partial hip replacement. The nurse promised to keep me updated but I haven’t heard anything from her. My husband was planning to participate in an extension of the trial so they may not be giving out results of the study until the extension is over.

[enjoysalud in reply to Cade08]

I am so sorry for your loss. I can relate. I lost my son to PSP, 55 years of age, May 4, 2017.

[Cade08 in reply to enjoysalud]

I am so sorry. Your son was so young. My husband was 69.

[katras]

acorneater,

I live in Portland, OR & am participating in the Abbvie trial. On Friday, I will receive the 12th infusion. My understanding was it was being done worldwide. It targets the tau protein as does the Biogen trial. This trial ends in January, 2020 when the participants find out if they’re receiving the drug or placebo.

[Hidden in reply to katras]

Do feel like it is doing anything?

[Christine47 in reply to katras]

just read the ABBV study has been cancelled. Have you heard more about this?

[Biosearch in reply to Christine47]

Where did you read that the AbbVie trial had been cancelled?

[Christine47 in reply to Biosearch]

A post on the CurePSP forum called Smart Patients.

[katras]

Hard to tell, honestly. My ability to walk has gotten worse but cognitively I am the same. I feel the disease is progressing.

The beginning of August, I will receive the drug for sure— I promise to report then.

[Makua]

I know the University of California San Diego was looking for candidates in 2018. However my wife did not qualify due to her condition.

[katras]

I just got the call from the clinical trial coordinator saying the Abbvie study has been suspended because no one was getting better. Sorry to have to report this.

[Biosearch in reply to katras]

What trial location was this?

[Marie_14]

Dear all

Today there has been very interesting news on the BBC. They have been using a therapy called gene silencing and it has worked for a very rare disease which I am afraid I have forgotten the name of.

However they did mention they hope it will stop if not hopefully cure diseases which have no treatment. One mentioned was MND. I think in the US you call it something else? I think this has enormous potential. if they can switch off the gene or genes causing the problems of PSP and CB D and MSA or indeed anything else we are going to have a big party! They have started to use the treatment already in he NHS. They are going to try it on patients with Dementia soon.

Marie x

[Heady in reply to Marie_14]

I saw that too Marie, it certainly sounded promising, as therapy was stopping proteins growing. Definitely join in with the party, if/when they find a cure/medication to help or even, reverse the disease, as they were talking about. Won't that be a bitter sweet moment!

Lots of love

Anne

[Marie_14 in reply to Heady]

Anne

This is very exciting I think. It did mention stopping the plaques spreading and also possibly reversing the condition. I think the latter might be a long way down the road however. If they can stop the condition in it's tracks that would be huge. They didn't mention PSP but because the people affected with amelodosis have the same problem with plaques spreading it stands to reason it should work for any neurological condition which starts with the same problem?

The NHS have managed to do a deal with the people who have discovered this. It is still expensive but much less so than providing care, equipment,and all that goes with these conditions.

Can you imagine people with Alzheimer's responding well to this? Care homes would actually have spaces for people with other conditions? Maybe they might actually become care homes again?

I just hope we can have the party sooner rather than later! Bitter sweet as you say but then we always knew one day that would be the case? I wouldn't wish any of these conditions on my worst enemy.

I think this treatment must be available if you pay for it but it will be costly. I think it is about £100,000 on the NHS and that's because they are offering it to this particular group first but the potential is mind-blowing!

Marie x