I was contacted to be a patient advisor for this new drug, Ocrelizumab. The conference is in Chicago, November 3. I will be attending as a Patient Advisor.
If you have questions about the drug etc. Post them here and I will take them with me and try to get answers.
I read about this drug on the MS Trust website. My questions are simple. Does it work, and, if so, when can we get it?
Hi Nenebird, sounds interesting.
I would like to know if it can stop progression, which I assume it does, but also if it can reverse damage already done?
Best of luck with it. What a great thing to go to and especially as it’s in Chicago!
Hi Nenebird !
I’ve had MS for 18 years so far, first 8 years as RRMS and then classed as SPMS for last 10 years.
Physical disability has been slow but steady over this time.
I’m now in my early 50s - is OCRELIZUMAB:
a) likely to improve things for me (ie - repair long established existing damage)?
b) halt further progression?
c) not help at all in these circumstances?
Thank you so much for offering to raise questions on our behalf !!
This page should help answer a few of the more straightforward questions.
Please could you ask about timescales - I read it would be approved by the FDA on 27th December, is that still the case? And before we all get too excited, is it a definite to be approved, or are we jumping the gun?
If you could possibly find out likely dates for it being available here in the UK, that would be great, but not sure that sort of thing would be covered.
That’s a very exciting opportunity, by the way - do you get to go to lots of things as a patient advisor?
Thanks for the great questions. I will certainly try to get definitive answers for all of you. What the press says so far is it does target stopping progression. There are some reports of it reversing some damage, but I will see what data they present at the conference.
This is my first time being contacted to be a patient advisor. It just came out of the blue. I guess from being active on various MS forums. I got an email, asking if I was willing to talk to the company rep. I said yes and they called me. Talked to me about my life with PPMS and then said they would get back to me. Next thing I know they are asking for my preference for travel arrangements and I have a ticket to fly to Chicago!!!
I am very excited about the drug. I am going to call my neurologist and let him know I am participating because I signed a release to let them have my records, so may be I will be offered the drug when It’s released. I am ready!! My progression has been slow but still evident.
My neuro says that Ocrelizumab is just the old drug rituxumab revampted. Not much change really but rituxumab is moving out of patent so the new version ocrelizumab is just there for pharma to get more money. Yet the doctors on the barts blog seem excited for Ocrelizumab.
Yes, it is, but that doesn’t mean that it hasn’t been shown in a clinical trial to stop/slow progression. That’s why the Barts bloggers are excited.
The comments on the Barts Blog are generally very positive.
“For people with MS the good news is that the ocrelizumab, a follow-on from rituximab, should be licensed in the major markets within the next 12-24 months. Ocrelizumab has several advantages over rituximab, the main one being that it is less immunogenic than rituximab with a very low anti-drug antibody rate. An interesting question will arise is whether or not these advantages will change prescribing habits in countries such as Sweden and the USA”.
This was an interesting, if unrelated blog on PPMS.
Yes you are spot on and obviously an avid reader too.
Quote from above link to Bart’s Blog:
‘In short, pwPPMS have unfortunately missed out in the relapsing phase of the disease. They are simply unlucky that a new lesion did not occur in a clinically-eloquent site to cause a relapse and bring them to the attention of a neurologist earlier in the course of their disease. They only present when they have lost their reserve capacity. The good news is we now have a positive trial of ocrelizumab. Let’s hope the regulators and payer allow pwPPMS access to ocrelizumab.’
This reminds me of a Bart’s blog a few years back saying that it’s possible that pwPPMS have in fact had RRMS but the symptoms were so mild that it was never investigated as possible MS.
For myself I feel this is very true. I had years of weird symptoms that either were not bad enough for me to see a doctor, or lasted for such a short time that I didn’t bother seeing a doctor, or when I did see a doctor, were put down to anxiety. And once you have ‘anxiety’ on your medical notes EVERYTHING from then on is put down to anxiety!
In fact, it was to the extent where I believed myself to be suffering with anxiety and believed I was a hypochondriac. After many years I stopped going to see the doctor altogether even though I was suffering with pins and needles, numb patches, swallowing problems, dizziness, pain, and especially fatigue!
It was a bad case of shingles on my face and scalp that finally got me to a doctor and, very long story short, finally got me a dx of MS.
I wonder how many other of you dx with PPMS also have similar history of odd, unexplained symptoms that could have been mild episodes of RRMS?
(Sorry, longer than I meant it to be )
this is so true and I’m 100% with you. I believe my first ‘relapse’ happened when I was 22.
Nenebird, good luck with the trip. I look forward to hearing all about it
Both of the Barts Blog and generally.