More cautionary info about Ocrevus

[Raingrrl]

I'm planning to talk with my neuro about Ocrevus when I have my 6 month checkup in about 10 days. I was feeling really hopeful and positive about being able to finally switch off Tysabi to something safer. (I'm JVC positive, have an index over 2.0 and have 5 years of Tysabri under my belt so I'm in the higher PML risk category.) Now I'm not so sure based on things I've been reading.

I wanted to share this post from one of my favorite MS blogs in case anyone else is considering using Ocrevus. wheelchairkamikaze.com/2017...

Be sure to also read the article he refers to by the researcher that had worked on both Rituxan and Ocrevus: healthnewsreview.org/2017/0...

[jimeka]

Thankyou Raingrrl, it was very interesting and informative reading, blessings Jimeka 🦋 🌈 Please let us know how you get on at your neurologist appointment

[Morllyn]

Thank you!

[BillD999]

Good info, thank you.

[erash]

Very enlightening Raingrrl Thank you so much!

Very aware PHaRMA employs these tactics. My neuro has told me Rituxan has worked for many of her pts. But is no longer accessible.

[Iona60 in reply to erash]

@erash Why isn't Rituxan accessbile anymore?

[erash in reply to Iona60]

Iona60 i think it's just no longer paid for by insurers

Likely because genetech/Roche make both of them they are not going to put the $ into the Rituxan research required for MS indication

[Iona60 in reply to erash]

erash I hate big pharm politics. Teva doubling the dose of Copaxone and switching to 3 x did me in.

[erash in reply to Iona60]

Iona60 for my adv. pharmacology class I used a book called "The Truth about the Drug Companies," by Marcia Angell ((2005)

Very enlightening 🤔

[Juleigh21]

Thank you Raingrrl ! That was extremely interesting and informative! It's scary how the public can be manipulated by the huge pharmaceutical companies. 😟

[jennie62]

Raingrrl I was planning to do the same at my neuro appointment in a few weeks, but now having read the articles posted by Wheelchairkamikaze and Healthnewsreview I'm very concerned that Ocrevus is a new drug and really hasn't had a "go" with many people.

Thank you for bringing the articles to my attention.

[greaterexp]

Thank you for posting this. I so appreciate those who find articles of interest to us as MS patients. They can be tricky to find.

[REDLIPS44]

WOW I just had my last dose of LEMTRADA.

[Elle61]

Good info , Thank you

[Iona60]

Thank you Raingrrl . I could only quickly skim through them, but seem like a must read for anyone considering Ocrevus.

[Fancy1959]

Thanks for sharing Raingrrl. Unfortunately, we live in a world governed by Big Business. We don't have to like it, but we have to realize it happens everyday without us even realizing it. Fancy1959.

[Raingrrl in reply to Fancy1959]

Hi Fancy1959 ...I'm quite aware of how "Big Business" operates having worked for 30+ years for a Fortune 500 corporation. Big Pharma as a unique subset can be the worst, IMO, because they affect people's lives. It's not a matter of not liking it, it's that I don't want to be fed PR hype when I'm making a critical health decision.

Until I read the info I linked to here, I had this very positive view of Ocrevus being a big breakthrough with a much better safety profile than Tysabri. I'm disappointed in the reality and now uncertain which direction is best for me. Seems like a Solomon's choice.

[Joannskianni]

Well, that's enlightening! I looked up my current and previous neuro and found a huge disparity in the $$ they've each received from pharmacy companies. It shakes me up, to be honest. I didn't find anything on the average amount on the Dollars for Docs site and I really want to know.

I'm currently in a trial for Ocrevus. The reason I wanted to participate is because my MS has started to progress a little and, because I'm older, that I'm a good guinea pig because I don't have as much to lose as someone younger in terms of long-term side effects. I knew, too, that Ocrevus is similar to Rituxan but wasn't aware of how close it actually is.

Now I have something to ponder all day.... dangit.

[Raingrrl in reply to Joannskianni]

Joannskianni ...how long have you been in the Ocrevus trial? Has it been a positive experience for you?

[Joannskianni in reply to Raingrrl]

Raingrrl ... I'm in the CHORDS trial. I had my first round of the infusions at the end of January and beginning of February. So far, it's been very positive. My spasticity is down to practically nothing compared to where I was (an almost constant MS hug and frequent leg spasms) and my energy level seems to be be on a more even keel throughout the day. Fatigue isn't nearly as bad and my balance feels like it's much better as well.

That being said, I still have many of the blessings that MS has bestowed upon me (just a little sarcasm!). Overall, I don't regret taking a chance on ocrelizumab. I'm just getting started on it so we'll see how it goes.

[Fancy1959 in reply to Joannskianni]

Joannskianni, it's Fancy1959. I don't thiñk I've spoken before, so I wouĺd like to welcome you to this incredible chat room. You have found a safe place full of compassionate and kind people who truly understand what you are going through. You can come and voiced your concerns, ask questions, and find out the latest news in research as it concerns MS.

I will pray that your positive results contine. What therapy were you on prior to getting into the CHORDS drug trial, i m going to get on the new therapy as soon it goes thru the approal maze from the healthcare network. Please keep in touch as there are lots of people in this chat room that are anxiously awaiting news on the results as it relates to Ocrevus. Untill we speak again please take care. And remember together we are stronger!

[rlh1974]

Raingrrl As Always, You are a wealth of info!!!!!! Thank you so so much!