Ocrevus controversies?

[erash]

sumo.ly/yMly

I hesitate to post this article because I know some of you may be currently starting this medication. Although it identifies some concerns, I believe that there are no perfect drugs , certainly no perfect MS drugs, and perhaps Ocrevus has more critics with personal vested interests because everyone was eagerly awaiting it and it was touted as such a miracle addition to the MS arsenal. And perhaps it is! or at least opens avenues to new treatment approaches. So hopefully this article simply provides more information so that we can all be smarter consumers and self-advocates.

[Jesmcd2 CommunityAmbassador]

It started to get to techy for me, 😞 but bottom line, do you think it's the same as retuxen? erash and l have no doubt the pharma company. Are out for themselves.😕

J🌠

[erash in reply to Jesmcd2]

Jesmcd2 i think the 2 drugs are similar. I don't know enuf to say if chemically they are exactly alike. Genentech suggests there are some beneficial differences.

I wouldn't expect otherwise from a pharma co. Then again, I don't know of many businesses that are 100% altruistic.

[BillD999]

erash, Thanks for posting this; it is unfortunate but unavoidable that we are to some degree at the mercy of the pharma industry if we want to take drugs. It's also true that part of their motivation is to make money. I think it must be the responsibility of the FDA to make sure that Genentech is not just sticking a new label on an old drug & calling it something else, and as long as regulators are allowed to do their jobs maybe we can have some confidence we are protected. But that's another discussion.

[Miriade]

Hi Erash, you did good talking about Ocrevus. Rituximab is the first generation of the drug and is only 50% or less no humanized monoclonal antibody. I was going to take Rituximab but I refused because of high percent of immune reaction, it is from rat , not human monoclonal antibodies. I could not get in the trial for ocrelizumab because the cut is 55 years old. But the best of all is the 3th generation, Ofatumab, highly percentage of good results and the most purified and lower dose. I am trying to get Zynbrita for me now, but I need to appeal because is new and the insurance refused initially, but agreed to accept when I send the appeal.

[erash in reply to Miriade]

Miriade

All of these drugs are a bit concerning. Unfortunately, the ideal drug would be 100% effective, no side effects, and covered by insurance... And doesn't yet exist...🙁

Hope you can get zynbrita coverage!

[Raingrrl]

Thanks for posting this erash ! The more info we find, the better decision we can make. I'm glad to see that Dr. Vollmer is starting a study to compare rituximab to ocrevus. That should have been done already IMO.

[erash in reply to Raingrrl]

Raingrrl

For obvious reasons, Pharma companies prefer to compare new drugs to placebo...🤔

[Raingrrl in reply to erash]

Yeah...I get that. It will be interesting to see what Dr. Vollmer's study finds out.

[itasara]

Glad you brought his up. Knowing very little about this and being on Copaxone for 12 years with no big problems I was curious but not really looking into it until today! Today I as at the MS Walk and there was a rep their for this new drug. She gave me printed info and I asked her if it was really gook for all MS patients including people like me with RRMS and not much of any problems with my drugs or the disease. She said that If I were tired of injections or pills, then this was the least time consuming, one about 6 hours twice a year. I asked her about side effects and according to her there has not that that she knows of (but she is a representative) any one who has had major problems with it. She says it is most effective drug of all of them and is not an interferon so no feeling nauseated or flu-like.. I don't get that symptom with Copaxone which one reason I am on it. She says, however, it is better for MS than Copaxone.So if this is all true about the new drug, it might be worth looking into it. I'll ask my Neuro about it, but generally he tells me "if it ain't broke, don't fix it," so he is happy with Copaxone. In the past has has said I'm doing well so why change? Then again I don't know how much experience if any he has had with this new drug. I'd like to hear more about it from those who are on it and what other neurologists who have prescribed it and what they think.

[ittygirl in reply to itasara]

Hi itasara. I am on Copaxone also since 2003. I haven't had any problems either on this therapy. It has work very well for me but I'm having a financial problem taking this medication and was seriously thinking about Ocrevus as it is given in an infusion center or other facility and would be covered under Major Medical with my insurance. At least that's what I've been told. I tried Tysabri for the same reason but had a serious reaction to it after 3 infusions. So now I'm back on Copaxone. I don't mind doing injections but I need to find another alternative. I can only get 1 more month of Copaxone....then I'm done for the rest of the year. I haven't heard any pros or cons about this new drug.

[itasara in reply to ittygirl]

I have only read a few bits and pieces about this new drug. There is a research study out that I got today from multiple sclerosis society. I briefly read it and it still sounds positive although there were some reactions with some recipients in the study. Right now because I'm on a strady course with Copaxone I'm not sure it would be prudent to switch and I'm pretty sure my Neuro won't be for it because he says I'm doing well now why change. I know that there are options from shared solutions and other insurance companies for helping to pay for Copaxone. Every time I order it bothers me however at this point I doubt I would be eligible. So for now I'm plugging along. The Ocrevus rep I spoke with was very enthusiastic and said they haven't had any payment problems with insurance or side effects inGeneral etc. etc. But on the other hand she did represent the company so it remains to be seen. I think because it is so new it's probably prudent to wait and see what happens.

[ittygirl]

Thanks for the reply. I should probably call shared solutions to see if they can help me. I also have done well on Copaxone and don't want to change therapies. It seems you have done more research on this new drug than I have. Thank you for the info.