I just got home from my neurologist appointment at Rush University in Chicago and I'm so excited I just had to come and write. My doctor calls Ocrelizumab a "game changer" in MS treatment. He says it should be available by 2017. What do you guys know? I've done a little research and it's very exciting. NO side effects and up to 96% reduction in relapses????? Wowza. Where do I sign up?!
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Hi and Happy New Year, DPL2014. I found out about this drug a few months ago after reading about it in a NMSS magazine. Then, I started to investigate. I saw that it had been through phase 1 and 2 clinical trials named OPERA I and OPERA II. Then it was going to phase III trials in Basel, Switzerland. Then, I found out that the OPRA trials were conducted in other foreign countries, as well. So I put in a call to my neurologist. He said that if I can find the trial site, nearby, (meaning in the U.S.,), he would be glad to work on getting me in. I , then, contacted the NMSS and asked why there was no coverage in ANY of their publications about these trials, you know the number of participants, the negative side effects, etc.
There isn't ANY word about Dr. Burt's clinical trials on HSCT, either! He has been doing these Stem cell procedures for about 10 years. I'll bet you never heard about them, not from our advocates, the NMSS ! I am sick to death of this disease and the subversive culture that has grown up around it ! I hope this year will show some changes in MonSter eradication ! Happy New Year !
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Originally posted by JerryD View PostHi and Happy New Year, DPL2014. I found out about this drug a few months ago after reading about it in a NMSS magazine. Then, I started to investigate. I saw that it had been through phase 1 and 2 clinical trials named OPERA I and OPERA II. Then it was going to phase III trials in Basel, Switzerland. Then, I found out that the OPRA trials were conducted in other foreign countries, as well. So I put in a call to my neurologist. He said that if I can find the trial site, nearby, (meaning in the U.S.,), he would be glad to work on getting me in. I , then, contacted the NMSS and asked why there was no coverage in ANY of their publications about these trials, you know the number of participants, the negative side effects, etc.
There isn't ANY word about Dr. Burt's clinical trials on HSCT, either! He has been doing these Stem cell procedures for about 10 years. I'll bet you never heard about them, not from our advocates, the NMSS ! I am sick to death of this disease and the subversive culture that has grown up around it ! I hope this year will show some changes in MonSter eradication ! Happy New Year !"It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate,
I am the captain of my soul." ˜William Ernest Henley
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Happy New Year, right back to you, DPL2014 ! Thanks for responding . So many people on this board don't bother ! And that's annoying !
So, getting to the point, what's the deal with the NMSS ? And all of the other unanswered questions that abound ?
There has been a stem cell replacement trial going on at Tisch MS center of NYU since August or September of this year, or whatever , conducted by Dr. Saud Sadiq, a notable neurologist. There has been no mention of the progress of the trials in NMSS publications ! So all of this stuff is like 'ghost' stuff! I'm sick of it and I want truthful information that is relevant. I don't think that's too much to expect !
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Well I dont know how we can get notifications when people have responded to our posts? I only know because I checked back again today. I'll always respond if I know about it. 😊
Do you follow Wheelchair Kamikaze? He talks about Tisch a lot!"It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate,
I am the captain of my soul." ˜William Ernest Henley
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try looking here, http://www.mymsaa.org/
just type in the drug in the searchhunterd/HuntOP/Dave
volunteer
MS World
hunterd@msworld.org
PPMS DX 2001
"ADAPT AND OVERCOME" - MY COUSIN
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Hi. We're y'all able to find out any news on ocrelizumab in your cities. I just took my first infusion of the medicine on February 1 go back on 15 for second dose. No side effects so far."If you think life is all honey and no bees then you have room to rent upstairs" Adrian RogersDx MS March 07-Avonex, Provigil, Ditropan XL June 07 started Solumedrol 1x a month
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It's doubtful that Ocrelizumab will be available in 2016, and I do not want to wait so I am pushing for Rituximab! I hope to be on Rituximab in the next few months. The two medications have many similarities and Ocrelizumab could be called Rituximab 2.0. Many believe that Ocrelizumab was a necessary invention for patent protection purposes considering Rituximab's patent protection was already set to expire. This would be quite similar to provigil, nuvigil or Copaxone and Copaxone-40. I could then swithc to Ocrelizumab when it became available or stay on Rituximab provided I responded well to it.
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Conflicting info?
During my appointment at a very well-known, research-oriented MS center last Friday, I was told that there is a fairly good chance that Ocrelizumab could be approved as soon as June of this year. I can't imagine that the doctor who told me this is uninformed about FDA-approval and all of that, but on the other hand, this does seem pretty fast track. I do recall, however, and just now went back to verify that Marc of Wheelchair Kamikaze fame had said a while back with regard to Ocrelizumab, that:
"Roche is targeting the first quarter of 2016 for regulatory approval in both RRMS and PPMS."So that's two sources who I respect and pretty much expect to know what they're talking about. So I wonder, could it truly be so?
Even if it is, the numbers aren't fantastic, but given what we've been offered up until now, this drug and high dose biotin are looking a lot better than the big, fat goose egg we have for treatment now. I'm already taking 200 mg biotin, and will make sure I'm in line for Ocrelizumab if that comes online any time soon.
At the bottom of their Ocrelizumab article, they did offer this contact info if anyone wanted to ask what it means: For more information or to speak with a trained Client Services Specialist, please call MSAA's Helpline at (800) 532-7667, extension 154. Questions to MSAA's Client Services department may also be emailed to MSquestions@mymsaa.org.PPMS
Dx 07/13
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Originally posted by deb2238 View PostHi. We're y'all able to find out any news on ocrelizumab in your cities. I just took my first infusion of the medicine on February 1 go back on 15 for second dose. No side effects so far."If you think life is all honey and no bees then you have room to rent upstairs" Adrian RogersDx MS March 07-Avonex, Provigil, Ditropan XL June 07 started Solumedrol 1x a month
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J-Bo,
I am not claiming to know more than your stellar neurologist or Marc. I was just stating my opinion and here's my rationale:
- Unless I missed something, Roche has not submitted Ocrelizumab to the FDA
- The FDA has already stated they would hasten the approval process, but it's the government in an election year
- After approved, Roche will need to get marketing materials done, ramp up production, train infusion centers, patient assistance programs put in place
- Insurance companies will need to add Ocrelizumab to formularies. Some insurance companies update monthly and others quarterly so some patients will be able to get on it sooner.
- Patients will need to get into their neurologists, medication ordered, any wash-out periods completed
- Whatever delays I missed ....
So even if Ocrelizumab is approved, I do not believe it will be readily available this year. I hope that I am wrong, but these approvals normally take a bit longer than any of us want.
I wish you well!
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- Unless I missed something, Roche has not submitted Ocrelizumab to the FDA
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Originally posted by JerryD View PostMy neurologist says that Ocrelizumab is a reformulation of Rituxan (Rituximab) which was previously on the market. He says that he doesn't have much faith in the drug. But who knows, maybe this will be the 'holy grail' ! I could surely use some help !
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Originally posted by JerryD View PostMy neurologist says that Ocrelizumab is a reformulation of Rituxan (Rituximab) which was previously on the market. He says that he doesn't have much faith in the drug. But who knows, maybe this will be the 'holy grail' ! I could surely use some help !
But there was a suggestion of a potential decrease in progression in younger patients with PPMS (younger than 51 yrs old), especially in those with inflammatory lesions.
So if Rituximab = Ocrelizumab for PPMS, then for me (older than 51 and no inflammatory lesions), I will hold off my excitement until the final Ocrelizumab results for PPMS.PPMS for 26 years (dx 1998)
~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~
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