@alephbet

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alephbet

Ocrevus vs Tysabri

Good morning, everyone, I spoke with my MS nurse about possibly switching from Tysabri to Ocrevus later this year. My neurologist isn't inclined for me to switch since "Tysabri is working so well for you." Meanwhile, I just read this morning that the neurology director at my hospital, Dr. Anthony Reder, worked with Genentech in developing ocrelizumab (Ocrevus). He was involved in the first clinical trial here in Chicago. He considers it a breakthrough: "this drug is at the highest level of benefit of any drug we have, and it also has the fewest side effects." Anyway, my MS nurse told me that me that Tysabri works by strengthening the blood-brain barrier against T cells. But she wouldn't tell me if Ocrevus works the same way (my neurologist will tell me at my next appointment in January). Hypothetically, what if I switched to Ocrevus, but it wasn't as effective at slowing down the progression as Tysabri once was for me? Thank you for your help and your patience. Alephbet

Stumbler

@Stumbler

@alephbet , wouldn't it be good if all the medical professionals sang from the same hymn sheet? Personally, I would compare the clinical trial results for both drugs and be directed by that. Just be aware that if Tysabri has a washout period, you may be at risk of a relapse during that time. So, a couple of considerations. And, would your insurance cover the change?

alephbet

@alephbet

Thank you so much, @stumbler, for your sage advice. I will look up the clinical trials for both. I had no idea that Tysabri had a washout period. If it's a monthly infusion, wouldn't I wait only another month before starting Ocrevus? I would hope that insurance company Aetna would be willing. It took them four months before they accepted that Tysabri was not just for fun and games. They wanted proof: my multiple MRIs, spinal tap, etc., which my MS nurse provided. Since Tysabri is $14,500 a month in Chicago, I would think it would be cheaper for me to switch to Ocrevus for $65,000 a year. (I'm stunned: Tysabri is $174,000 a year?! That's why I can't quit my day job. I'd lose my health insurance.) Anyhow, MS treatment is very expensive. I can't imagine what I would do if I didn't have insurance to cover it. <sigh> Maybe someday they will find a procedure to remyelinate our CNSs. Thanks! alephbet

Stumbler

@Stumbler

@alephbet , I'm no expert on wash-out periods, so this'll be a question for your neuro. :wink:

nleras11

@nleras11

First neurologist wanted me to start tysabri. Specialist wants me on ocrevus, I tested high for pml and no instances of pml for ocrevus but it's new. On my third round of steroids now. Still waiting for treatment. No relief or relapse yet.

californiadreamin

@californiadreamin

It's a tough call but i would lean towards seeing what your jcv status is like and making the decision based on that. If you look at the trials it's really hard to tell which is better because the populations are not close to the same so there isn't a common comparison point. Ocrevus is new and there is something to be said for having some history. Both are highly effective and I think it's hard pressed to believe anyone knows for sure which is more effective. Any MRI activity or any reason to change at the moment?

alephbet

@alephbet

Dear @californiadreamin, Please forgive the late reply. I am currently JCV-negative as of last month's test. My next MRI is scheduled for February. I have an appointment with my neurologist tomorrow morning. He just gave a speech here in Chicago about Ocrevus (I wasn't there), so I will ask him for his opinion on Ocrevus, about washout periods, etc. My MS nurse told me that my doctor isn't inclined for me to switch from Tysabri since it's been working so well for two years. (No relapses; no changes on the MRIs [i.e, no new lesions]. ) However, I would still like to know why one drug is more effective than the other. (I can't find any clinical trials to support one over the other.) I'll find out tomorrow I hope.

californiadreamin

@californiadreamin

I think while Ocrevus seems really effective, its still not as good as Tysabri. I am assuming your doctor will lean towards keeping you on that. That would be my gut feeling as well. One think to note though is if you become JCV+ your risk of PML on other DMTS (including Ocrevus) is likely to be higher. If its working well for you, Tysabri is a great option as long as you stay JCV- . I personally wouldnt switch. My wife has the option to move to Ocrevus as well, but at the moment we are going to wait at least another year for data, unless something changes with her MS.

dvtrv

@dvtrv

HI @alephbet, What were your findings after your appointment(s)? I'm having to choose what to go on next as I've been on Tysabri, which is goooood, as I tested positive for JC Virus in 2015. I'm considering between Mavenclad and Ocrevus. Thanks, dvtrv

alephbet

@alephbet

Dear @dvtrv, Thanks for asking! Earlier this year I discussed switching to Ocrevus after 2 and a half years on Tysabri. (I'm still JCV negative.) So my latest MRI in April found more lesions on the CNS and the front hemisphere of the brain. <sigh> So after calling Genentech (per my MS nurse) about insurance coverage (which thankfully I have), I did switch to Ocrevus in late May and early June. (The first infusion is divided -- two weeks apart.) Anyhow, I don't regret taking Tysabri. It is really effective and helped to slow down what felt like a quick fall down a mountain in terms of regression. (For example, before Tysabri I was having trouble with depth perception, so I couldn't walk down a flight of stairs. Ugh.) But my family thinks that I have more energy and am less spaced out since starting Ocrevus. My next appointment is at the end of November. (How fun that infusions are only twice a year. I'm being serious here.) I don't have any insight on Mavenclad, but for now Ocrevus has made me feel like I don't have a disease (even though I know it's lurking in the shadows). Please let me know if there's anything else you need. I'd be happy to help. Best wishes, Alison aka alephbet

dvtrv

@dvtrv

Thank you aka, he he, Was there a washout period for the change over to Ocrevus? Did you have go "Cold turkey" for any length of time? I've been on Ty for the last 7 years and it's done wonders, shame I became JC positive. I'm currently trying to load myself with as many questions as I can for my specialist on Monday.

alephbet

@alephbet

Hi @dvtrv, Sorry for the late reply. Regarding the washout period, my neurologist told me 8 weeks. My last Tysabri appointment was in late March, and the first Ocrevus was in late May (followed with the second infusion in June a couple weeks later). Anyhow, I didn't have any relapses in the washout period. (And I don't think I've had any relapses since I started Tysabri. But Tysabri didn't keep me from developing more small lesions throughout the CNS.) Hope that this helps. And good luck with your specialist! Alison/alephbet

dvtrv

@dvtrv

@alephbet Initially I decided on Ocrevus, then went home and reread about Mavenclad and thought to myself “you silly sausage” (we’ll certainly something along those lines). I’ve now given my final answer as Mavenclad. 5 tabs a day in first week, then again in2 weeks, then same again following year then nothing. No brainer really.

dvtrv

@dvtrv

@alephbet Apologies I got distracted by my 19 month old son. Ahem; Glad to hear yours is going well. I chose Mavenclad as it’s been around for about a year already but Ocrevus hasn’t. My next infusion, Sep, then hopefully after LP should start on M’d. I’ll update as it happens

alephbet

@alephbet

Dear @dvtrv, A belated congratulations for your 19-month old son. That's an exciting age! (My son just turned 20 years old on August 12th. Time truly does fly.) I will need to learn more about Mavenclad. Are these pills like Gilenya or Tecfidera? Or is Mavenclad more effective? I hope that you have a wonderful day. Best, Alison/alephbet

dvtrv

@dvtrv

@alephbet (where u get username from?) Thank you, I’m 43 in October with another one on the way, but early to publicise. Honest answer is 🤷‍♂️ no idea I’m afraid. I’d look into it, or ask around on here. MS n looking after my son for a couple of hours after nursery three days a week is a great mix. I only love one of them. Hehe

alephbet

@alephbet

Dear @dvtrv, Another on the way? Congratulations again! (My 18-year-old daughter just left for college. Less stress at home now. hahaha) By the way, I'm 46 and trying to stay well enough to not need a caregiver anytime soon. (Username "alephbet" is Hebrew for "alphabet." I'm not Jewish -- my grandma was.) Anyhow, a couple hours a day, three times a week is ideal! Babies and toddlers take so much energy. I think they're worth it though. :-)

dvtrv

@dvtrv

18 and apparently it flies by, hmm, interesting. My wife works 3 days a week 9-17:30 and I manage 2 hours a morning 5 Day’s a week. This I can manage, unfortunately. I used to work daft hours and be the boss. Now I clean 4 2 hours a morning. Life hey!!! We’ve no idea what is around the corner, I know I’m living proof. Great chatting to you.