Ocrelizumab for PPMS ?

[JerryD]

Whatever happened to the clinical trial for Ocrelizumab ? There was a short almost non-existant blurb in an NMSS publication about the 'positive' results of several studies of Ocrelizumab for PPMS . Then, the information pipeline dried up. I wrote an email to Cyndi @ nmss.org, the CEO, and my emails received very little serious response! So, I guess I am spitting in the wind ! That's what it feels like when you have MS !

[Seasha]

Jerry - read this https://clinicaltrials.gov/ct2/show/...lizumab&rank=5

According to this phase III trial, the estimated study completion date is Nov. 2017

Like all clinical studies, it takes time!!

[pb909]

I found a pretty good newspaper article with an overview recently.

You can search for it from the Orange County (CA) Register from 10/08/2015:
oc register ocrelizumab

FYI: I asked my Dr. about this at my last appt and he said my current Lemtrada treatment is the best option for me at this point.

[JerryD]

Yes, Seasha, I know that it takes time ! I've been calling and asking and emailing and posting about this phase III trial for about a year, now! I just discovered that there is a study location very near me, in Philadelphia. Probably in the University of Pennsylvania hospital or Thomas Jefferson University hospital. Those hospitals both have MS clinics with highly respected MS clinicians. I've consulted with the top docs at both of them. i see that these trials are 'not' accepting participants ! That's funny, I didn't have a chance to apply ! Oh well, just another kick in the shorts for the sick guy!

[JerryD]

Hey ! Where's my response ? I responded to Seasha's post and it disappeared ! It is difficult to respond or carry on a cogent conversation if my responses are deleted anonymously! Whbat's the deal?

[hunterd]

I see a reply, maybe it just took a little time to appear. I am not sure what happened exactly

[JerryD]

Thanks, hunterd. I'd like to para re-phrase your post script!
2016 may be a great year !

[hunterd]

we can only hope Jerry! PPMS SUCKS!

[KoKo]

Hi Jerry

Here is an informative article about the Ocrelizumab study from Barcelona, which appeared in the MEDPAGE TODAY:

http://www.medpagetoday.com/MeetingC.../ECTRIMS/54041

According to the writer, results are "positive, but not impressive enough" (?) for PPMS.

Time will tell....we can only hope.

Take care

[KoKo]

unable to access article now.......

Jerry ~

For some reason, the website Medpage Today won't allow me to access that article I referred to in my last post (which I was able to access and read a few times before).

The site is now requiring me to register and log in.

Sorry about that (if you can't access it either, without registering).

[JerryD]

Thanks for your responses, KoKo ! I know that I seem angry and sarcastic, sometimes. I am only trying to elicit responses from the largest number of readers. Its similar to the stand-up comedian saying " Hello... Is this thing on? " I am still hoping to see the outcomes of the Ocrelizumab trials, before Christmas of this year !

[KoKo]

I know that I seem angry and sarcastic, sometimes.

No problem, many of us can seem like that at times.

I am only trying to elicit responses from the largest number of readers. Its similar to the stand-up comedian saying " Hello... Is this thing on? "

I am still hoping to see the outcomes of the Ocrelizumab trials, before Christmas of this year !

I hear ya Jerry.

[JerryD]

Thanks again, KoKo. I have emailed Cyndi@nmss.org, the CEO of the national MS society, seeking results/answers about HSCT therapy that has been ongoing for many years with very little public exposure.
Don't you think that any treatment that showed positive results for lessening or eliminating MSer's deficits or progression. I'm sick of being sick and fed up with the empty dreams and promises that we are being fed by the national organization and the drug companies ! So what if I make someone angry with my attitude ! No one is as angrier than I am !
I started posting on this board about ocrelizumab in 2014 and I haven't found any solid information, yet!

[DPL2014]

Yep!

Keep fighting the good fight, Jerry! I'm right with you on Ocrelizumab. My MS Doctor is head of Rush University's MS Clinic in Chicago and he thinks Ocrelizumab is the real deal. They aren't saying exactly how effective it is with ppms yet, but if I had ppms I'd want the chance to try it at least! Even if it only made me mildly stronger, give people a chance!

My doc seems to think early 2017 it'll be available. "Time will tell" I guess? Unfortunately, time isn't on our side...

hugs from Chicago,

lj

[JerryD]

Thanks DPL2014. Yeah, this ain't a Rolling Stones song. 'Time is on my side'.. NO IT AIN'T ! But you knew that, didn't you? Still no response from Cyndi@nmss.org! I have been emailing her since December 20, my 57th birthday !