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.
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.
Thatās 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 Itās 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 doesnāt mean that it hasnāt been shown in a clinical trial to stop/slow progression. Thatās why the Barts bloggers are excited.
The comments on the Barts Blog are generally very positive.
āFor 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 USAā.
āIn 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. Letās hope the regulators and payer allow pwPPMS access to ocrelizumab.ā
This reminds me of a Bartās blog a few years back saying that itās 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 didnāt bother seeing a doctor, or when I did see a doctor, were put down to anxiety. And once you have āanxietyā 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?