Ocrevus Talk with Neuro

[Raingrrl]

Sorry this is so long!! Today I had a Q & A appointment with my neuro to try and understand why he is so enthusiastic about Ocrevus and why he is encouraging me to switch on to it. Basically he wants me off of Tysabri because my risk of PML has gotten to be too great. He even told me he wants me to switch because he doesn't want me to contract PML and die from it. Well I don't want to die of it either!! (He has lost patients in similar circumstances to PML.)

He will be switching all of his JVC+, long time Tysabri patients to Ocrevus. He said I could go on Lemtrada if I'd rather but after he described the issues with it, I like that option even less. His belief is that Ocrevus should have a similar safety profile to its predecessor Rituxan. When I asked him why wouldn't my PML risk carry over to Ocrevus since it is a biologic like Tysabri, he said its because of the difference in the affects on the immune system. Ocrevus operates on the B cells whereas Tysabri operates on the T cells. I asked him about the cancer risk and he said that the risk of cancer on Ocrevus is less than my risk of PML on Tysabri. And that the risk of cancer and other opportunistic infections is similar across all the biologics. So...I guess once you are at the point of the first tier drugs not working and you enter the realm of the biologics, these are the risks.

Since we are coming in to the summer months and I'm very heat sensitive, he agreed with me that I should wait to make a switch. He doesn't want to be in the position of figuring out if its the heat causing me an issue or the drug. I agree totally. So...it looks like I will have one more dose of Tysabri in early July. Then fill out the Ocrevus paperwork at my neuro followup appointment in August. He wants me to wait 12 weeks from the July Tysabri dose so I'm looking at a first dose of Ocrevus in Sept.

One other thing we talked about it is that there is now a recommendation for patients switching from Tysabri to Ocrevus to have steroids during the time period from the last dose of Tysabri to the first dose of Ocrevus. I said it made no sense to me to do that because I've had almost no exposure to steroids and they are also an immunomodulator. He said that he had to present it to me but that he agreed with me 100%. The end result of our discussion is that I will not be doing the steroids unless I have some kind of flareup during that time period.

I'm definitely not happy about any of this but am not willing to keep taking a high risk of PML. I try not to think about it but its always there. I don't like that Ocrevus has not been tested in my age bracket. I also don't like that there seems to be almost zero facts around switching JVC+ patients from Tysabri to Ocrevus.

I've posted before that all this makes me feel like a lab rat and I hate that. I'm hoping a little more will be known by the time I'm supposed to get the first dose. When I suggested that to my neuro, he was not optimistic about it. He feels it will take more time than that.

[jimeka]

Thank you Raingrrl for a very honest and what appears a very accurate report, thank you for sharing. As you say so little is known about the drug so I see where you are coming from with the lab rat. Hope it does you the power of good, blessings Jimeka 🦋 🌈

[ssdw1958 in reply to jimeka]

Hi Raingrrl, I am glad you spoke of all your fears because I have a lot that you have. My big one is the cancer my mom and a lot of relatives have past from cancersion. I have enough issues I don't need any more. I hope everything goes well with you. Just make sure your pleased with your dessision

Let us know how you are doing.

[RobertCalifornia]

My neurologist is very positive on Ocrevus. I got approved by insurance on Wednesday and I start my first infusion on Monday. I do have PPMS so it is the only medicine for me.

[WAshingtongirl in reply to RobertCalifornia]

Please let us know how you do, RobertCalifornia . Best wishes for Monday's infusion. 💕

[Raingrrl in reply to RobertCalifornia]

Good luck RobertCalifornia ! Keep us informed. We will have to learn from each other because the info out there is so limited.

[Fancy1959 in reply to RobertCalifornia]

RobertCalifornia, it's Fancy1959. Good luck with your Ocrevus infusion! Please let me know how it goes. I hope to be starting it within the next few weeks. I am simply waiting on my medicare to approve it. Thinking about you take care. Fancy

[erash]

Raingrrl thank you for posting this!

I can't imagine the anxiety of WAITING for PML 😁

I read an article that said on average it takes 4yrs. Post marketing to determine other side effects of new drugs. Of course that's ridiculous! In 4 yrs. there will be newer drugs to be hopeful about and have to wait 4 more yrs to determine post market side effects!

All drugs have risks...even Tylenol which would never have made it OTC today. Hard choices b/w one poison or another or disease progression 🙁

[Juleigh21]

I don't envy you your decision. I hope a year from now you're singing the praises of ocrevus!

[Raingrrl in reply to Juleigh21]

I hope so too Juleigh21 ! I'm not a risk taker nor am I comfortable taking things on blind faith so this situation is just a nightmare for me.

[CalfeeChick CommunityAmbassador]

I certainly appreciate all the information and hope that you find peace with whichever choice you make. 🦋🌈💞😊

[Raingrrl in reply to CalfeeChick]

Thanks CalfeeChick !

[kdali]

Awesome update Raingrrl TY so much!!

[WAshingtongirl]

Sounds like you have a good neuro, Raingrrl , and that he's supplied you with an arsenal of info to help you make a learned decision. May you have peace when that time comes. Please keep us informed. 💕

[Raingrrl in reply to WAshingtongirl]

My neuro is awesome @Tutu. He is an MS specialist and doesn't sugar coat anything which is what I prefer. I'd rather get straight facts no matter how tough to hear. Knowledge is power! I like that he will have these discussions with me and not be condescending in any way even though I have no medical or even biological expertise. (He does respect that I'm a data person and that I look at everything though a logical, analytical lense. That's rare in my experience.)

[WAshingtongirl in reply to Raingrrl]

Is he in the Tacoma area, Raingrrl ? Or do you go to one of the MS Centers in Seattle? I go to the one in Kirkland.

[Raingrrl in reply to WAshingtongirl]

@Tutu...yes he is in Tacoma and part of Multicare. I'm looking at the appointment card I got yesterday and it seems his title has changed. It now says Neuro MS Specialist. He established the MS Center as part of Multicare's Neuroscience Center years ago. I've been going to him for at least 10 years. He isn't young and just took on a younger doctor partner so maybe he is finally doing some succession planning!

The Multicare MS Center doesn't offer all the services that some of the other local MS centers do. They will refer you but that's not the same as having a range of MS specialists from all the disciplines. I think the UW MS Center at Northwest Hospital may offer the most services. I've been to a seminar there and its a long aggravating drive for me. I've stayed with my neuro because he has been a really good doctor and I also have good support from the social worker there and the nurses.

Do you go to the one at Evergreen? That's quite a commute for you!

[WAshingtongirl in reply to Raingrrl]

Yes, Evergreen. When we lived on the east side, it was a 20-30 min drive. But it's now a 2-hr drive from where we live now. Like you, I like my neuro and find she's worth the drive.

[Allen5280]

I can definitely understand your concerns. If it's any consolation, I seem to be doing pretty good with the Ocrevus so far. I am recovering from a fall and am so happy I am not having much for side effects at the same time or it would be absolutely miserable. At any time if you have questions for me I am willing to answer them. Even though there was a trial done I still feel like a 🐀 myself.

[Raingrrl in reply to Allen5280]

Thanks @Allen5280! I'm happy to hear that your are doing well on it.

[Fancy1959]

Raingrrl, it's Fancy1959. I agree with your assessment and plan/hope to start Ocrevus in the next few weeks! My doctor is also very excited about the opportunity to start his patients on this new therapy. He was also involved and doing trials on the new therapy and did a lot of research in the field on Ocrevus. Keep us posted. Take care!

[Katabata]

Hi Raingrrl- Did your Neuro tell you what your titre or index rating of JC is? My current Neuro is encouraging Ocrevus, but that is just new Rituxan. I am lucky 6 yr Ty and JC-, told her that I am saving stem cell therapy for cancer, not for MS haha. Good luck!! 🍀

[Raingrrl in reply to Katabata]

Hi Katabata ! My current jvc index is 1.65. This is down from 1.99 last Oct. I thought this meant that extending out the time between Tysabri infusions to allow my immune system to kick in a little was working. My neuro isn't impressed and just wants to migrate me to Ocrevus.

[Kellyonpause]

Hey raingrrl, what is your age group? I am 36 and have taken Ocrevus and am also JCV+. Just curious if I could answer any questions for you.

[Raingrrl in reply to Kellyonpause]

Hi Kellyonpause ! Thanks for the response. I'm over 55 so over the upper age limit of the Ocrevus studies. My concerns are that there are no studies about Ocrevus in people my age and there haven't been enough JVC+ Tysabri patients switching over to know how safe or risky that might be.

There has already been one JVC+ patient switching from Tysabri to Ocrevus that got PML. They are blaming Tysabri and not Ocrevus nor the process she took to switch over. However, there is no proof of the cause...it's just educated guesses. Educated guesses by several doctors when I was 22 almost cost me my life so I prefer hard evidence not guesswork. I know that sounds dramatic but it's true.

[Kellyonpause in reply to Raingrrl]

Oh, I agree with you raingrrl, I can't seem to get my husband, mother, or neuro to realize that no DMT treatment IS a treatment plan and I can effectively manage just the symptoms of MS for a while and let my body have a freaking break from all the poison! I think they just throw stuff at me to see what sticks at times.