Day 2 Ocrevus Focus: I appreciate all who... - My MSAA Community

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Day 2 Ocrevus Focus

greaterexp profile image
17 Replies

I appreciate all who are taking the time to respond these posts about Ocrevus. Remember that you can choose to follow these posts if you'd like. It helps if you number your responses to the questions.

1. Why did you/your doctor choose Ocrevus over other DMTs (disease modifying treatments or therapies) for your MS?

2. What were your main concerns about using it?

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greaterexp
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17 Replies
Raingrrl profile image
Raingrrl

1. Had to get off Tysabri due to being JCV+. So I had to go on another equally powerful biologic without contraindications for other health issues.

2. I’ve posted about my concerns previously but will try to remember them here. These are my personal issues/opinions based on my own research and discussions with my neuro, the team lead for a local Ocrevus test team and the medical professionals in my family who reviewed the FDA approval documents for me.

a) Ocrevus was NOT tested in patients over 55 years old so that meant not tested in someone like me.

b) PML risk unknown due to test population being relatively small and less diverse compared to the population ‘in the wild’.

c) The one described PML case was a woman that switched from Tysabri to Ocrevus which is what I had to do.

d) Initially no information was available about the optimum timing for vaccines while on Ocrevus. This is a critical piece of information for anyone on a biologic that kills off B cells like Ocrevus and Rituxan.

e) The trial compared Ocrevus against Rebif instead of a more powerful DMT like Tysabri. So there was no real way to know the efficacy of Ocrevus at the time I had to make the decision.

jimeka profile image
jimeka in reply to Raingrrl

Thank you for your very honest, useful, reply. Hope the transfusion went well yesterday, Blessings Jimeka 🦋

Lilith08 profile image
Lilith08 in reply to Raingrrl

Thank you for this information. It really takes a team effort—and perhaps an advanced degree—to be fully informed! This is way more than I’d learned from my neuro when he suggested it (I opted out); essentially, “It’s new, we’re excited about it, and I’m recommending it to all my patients.”

erash profile image
erash

1. Both but mostly me after reviewing the literature and watching my decline. Neuro said because I had spms (now they think I have ppms 🤷‍♀️) Ocrevus was really the only DMT that might have a small chance of effect.

2. Main concerns were reduced immune system and risk infection, hair loss (which has occurred due to Ocrevus or age idk) and later shingles recurrence (I’m now on prophylactic valcyclovir each day)

Elizt3 profile image
Elizt3

1. Had been on Rebif well over 10 years and never adjusted to flulike symptoms. Also, losing injection sites because of lipoatrophy. Most recently was on Aubagio for 1 1/2 years, and while on it, MRI showed progression and had a relapse. Neurologist felt that wasn’t acceptable and that it was appropriate to move to a stronger med.

2) concerns about it only being approved by FDA for a year ( when the doctor first recommended it for me ), breast cancer risk, PML potential, impact of wiping out a portion of the immune system.

Iona60 profile image
Iona60

1) after 2 relapses within one year my neuro suggested that I switch to tysabri. My research led me to a webinar by Dr. Vollmer of the Rocky mountain Ms center that compares risk and efficacy of DMTs.

m.youtube.com/watch?v=Myc8U...

(Chart is at the 15 minute mark) . I decided that Ocrevus was nearly as effective as tysabri, but with lower potential risk of side effects.

2) my main concerns are risk of infection and that I may develop neutralizing antibodies. NABs.

jimeka profile image
jimeka in reply to Iona60

Thank you Iona, good informative video to watch, blessings Jimeka 🦋

Iona60 profile image
Iona60 in reply to jimeka

I found the chart most informative.

greaterexp profile image
greaterexp in reply to Iona60

Thanks for your response and the great video!

Iona60 profile image
Iona60 in reply to greaterexp

This video was the deciding point for me.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

1 After some serious testing, and my high risk of PML and a new lesion forming. My neuro thought this was the best DMT for me right now.

2 Main concern? It won't work. It won't slow down my lesion progression. Also, lowering my immune system. It takes to long to tell if there is a change. Or not. 1 infusion won't do it. And I'm to impatient.

carolek572 profile image
carolek572CommunityAmbassador

1. My neuro and I decided on Ocrevus together. I was the one that initiated the conversation. My therapy that I was on at the time wasn't working as well as we thought. And my 'ms' changed from RRms to PPms.

2. My biggest concern right now is health insurance related. :-D

greaterexp profile image
greaterexp

1. My neurologist had let me decide about which DMT to start on when I was diagnosed. But now that she is seeing progression, she said she wanted me on it.

2. My main concern is about infections, since those of us with MS have to be concerned about those anyway.

rjoneslaw profile image
rjoneslaw

1 I had been on Tecfidersa since 2016 and recently in 12/2019 I started having problems with my legs. I was unable to bend my legs so I did a round of steroids for 3 days so I was fine after that then fast forward to January 28, 2019 I ended up in the hospital for 2 weeks because I couldn't walk. While in the hospital I received IV infusion of steroids for 24 hrs for 7 days.

2

My main concern was/ is O really Rituxan . The patent for Rituxan has expired and drug companies like to apply for patents for drugs and just change the name of it or just reverse the name around ie Ampyra now being called dalfampridine .

How do can I tell what reactions I'm having is from O and not MS since they are the same symptoms.

Will my hair fall out?

Horse714 profile image
Horse714 in reply to rjoneslaw

More than likely your hair will start falling out mine did big time it makes me so mad that they doing mention it as a side effect!!!

rjoneslaw profile image
rjoneslaw in reply to Horse714

Thanks

kdali profile image
kdali

1. My options were Ocrevus or Interferon. My MD will not order anything with a PML history due to my JC level. I chose Ocrevus because I feel that it’s a lot more effective than interferon.

2. My main concern was that I would have to wait longer to get pregnant.

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