Convo with my neurologist about Ocrevus.

[Raingrrl]

At my neuro appointment today, he brought up Ocrevus as I knew he would. He has ordered blood tests as the first step towards switching me from Tysabri. I'm in the high PML risk category so he has been wanting to switch me off of Tysabri for some time. If I 'pass' the blood tests, then we go to the next step.

I asked him about PML risk since Ocrevus hasn't been available all that long. He agreed with me that it's an unknown at this point. He further said since it's similar in mechanism to Rituxan, it will likely be a similar risk which is far lower than the risk with Tysabri.

I read through the Ocrevus for RRMS guide he gave me. It mentions both the PML risk and the cancer risk. As to the PML risk it says although no cases have been seen, that it could happen. DUH! It talks about the cancer risk under possible side effects which I thought was an odd way to describe it. It goes on to say you should follow your Healthcare provider's instructions about standard screening guidelines. Again...DUH . I guess you can't expect a lot of detail in what are basically marketing materials.

Since the protocols for administration and the enrollment process aren't firmed up from what my neuro told me, it's unlikely I will be switched until late summer at the soonist. It still makes me feel like a lab rat.

[jimeka]

Hi Raingrrl, thank you for your report at least you have been able to discuss what was on your mind. I think we probably know as much as the neurologists about this new drug. Until it's been out for a few years, no one is going to know the true implications of using it. As you say lab rat. Thank you for the reply about the fever, until I had one even though I ended up in hospital it was my friends on this forum who informed me about ms and fevers. I now know what to expect if it ever happens again. Now get some sleep, blessings Jimeka 🦋 🌈

[erash]

Raingrrl thx for posting this. Please let us know how it goes. Fingers crossed that you have positive outcomes. At least you are going at it with eyes wide open.

It was my understanding that it begins with 2 half dose infusions 2 weeks apart. If tolerated then full dosing every 6 months.

Requires pretreament with steroids to prevent infusion reactions and several hours for an infusion.

Besides an MRI is there any other monitoring (routine mammograms etc.)?

Let us know what you find out?

Do u need to be off Tysarbi for a specific length of time before starting Ocrevus?

[Raingrrl in reply to erash]

Hi @erash!

Great questions! My understanding is the same as yours about the initial treatments. What I meant about the uncertainty of the protocols is that I don't know if you have to go to specific infusion centers like with Tysabri. I will likely go to the infusion center that has been giving me Tysabri. The nurses know me there, it has state of the art equipment and a lovely distracting view from most of the chairs. The care I get there is awesome.

I had IV steriods along with my first 3 doses of Tysabri to minimize any reaction so the pretreatment for Ocrevus makes sense to me. And like Tysabri, they monitor you for an hour after the initial dosages. The infusions are much longer for Ocrevus than Tysabri.

They do suggest routine mammograms but don't specify the interval. I will be following up on this more when the time comes.

I asked my neuro about a washout period for Tysabri because I've read in multiple places that there is a high risk of a significant exaserbation during the washout. He said he doesn't believe in washouts for Tysabri so will likely schedule my first dose on a day that would have been my next Tysabri infusion. Due to my PML risk, I have been getting my Tysabri infusions on 8 week intervals instead of 4 week. This is another reason why I won't likely start Ocrevus until late summer.

[Royjr]

erash brings up some excellent questions. I think time will tell on this drug. I hope it work for you and keep us informed.

[Jesmcd2 CommunityAmbassador]

I agree with Royjr inquiring minds want to know Raingrrl aka labrat😊

Jes🌠

[greaterexp]

Raingrrl , I applaud you for trying to make clearer the confusing and overwhelming amounts of information. We certainly have to try to become almost experts in our DMTs.

Thank you for sharing what you found out (and didn't). I feel a bit like a lab rat, even though I'm on a well known treatment. It sure makes me grateful for those brave people who blazed the trail in trying new meds at the beginning. I don't know what you'll choose to do, but I pray it will be the best possible choice and very effective.

I hope you keep us posted on all you learn.

Erin

[Raingrrl in reply to greaterexp]

I'm kind of between a rock and a hard place with this choice. I'm not much of a risk taker so feeling forced into decision between multiple risky choices is frustrating. I'm extremely uncomfortable with my risk of PML on Tysabri and other DMT's with PML risks and I can't take Gilyena. So that has left me waiting for something new like Ocrevus. Sigh.

[greaterexp in reply to Raingrrl]

I can hardly wait for the day when there is a simple cure for us all. In the meantime, we are forced into making difficult decisions. You're obviously intelligent and look carefully at your options, so I know you'll make the best choice possible.

[Kenbloom]

I wish that Genetech would release the sub-group data from the clinical trials and any additional data that they have from the expanded access program, offered to PPMS patients prior to FDA approval. After speaking with Genetech that doesn't seem likely. I guess that if the cancer risk and PML risk decreases in those taking the drug as part of the expanded access program, then Genetech will promote this data. If not, do not expect to see it.

[Raingrrl in reply to Kenbloom]

I don't understand why they don't have to be transparent with their data. That should be a requirement!

[RobertCalifornia]

I met with my neurologist last week. She already has my first dose of Ocrevus. They will give me the infusion at their facility. Only issue is I am being forced to change insurance companies on April 1st. The new company has been approving Ocrevus while my current company is dragging their feet. I have already been approved for co-pay assitance. As soon as insurance approves me I will get my first infusion. They did video tape and time me walking 20 feet and back (with my walker). I have been diagnosed with PPMS so I am excited about Ocrevus. My neurologist said to give it two years to see how effective it is. I can not say enough how helpful Genetech has been.

[Raingrrl in reply to RobertCalifornia]

Hi RobertCalifornia ! Its good to know that Genetech is good to work with. Once I get past the blood tests, then I'll have to make sure that my insurance covers Ocrevus and after that, I'll have to get co-pay assistance.

[ssdw1958]

I have to let you know I am so unsure what to do about Ocrevus, the only way I took Tecfidera and Ampyra was because it had been on the market for years. You see mother died from Lymphoma (cancer)25 years ago. So if anyone gets more information please let me know. Thank you.

ssdw1958

[Raingrrl in reply to ssdw1958]

Hi @ssdw1958! There isn't any cancer in my family, knock on wood, but I still feel cautious because Ocrevus hasn't been available all that long and more issues can appear once its out in the wild for a bigger population to experience it. I took the risk of being on Tysabri even though I'm JVC+ because there wasn't much choice 5 years ago when the first tier drugs weren't working for me. I pinned my hopes on Ocrevus having a better safety profile and was thinking...finally I can get off Tysabri and not have this risk hanging over my head. I'm really disappointed in what's happened so far. I will for sure be posting anything I find out. We are all in this together.