ocrevus

[judymax]

Thanks everyone for your replys regarding spms and ocrevus. Unfortunately my neuro refuses to let me try it.

[rjoneslaw]

Sorry to hear that.

It does say it's not for your form of MS but maybe you can find something that even better for you.

[greaterexp]

It's just a thought, but a second opinion may be a good choice after you do your own research. Another neurologist may feel the same, but if your own research leads you to want to try it, someone else may give you that opportunity.

[erash in reply to greaterexp]

I agree. 2nd opinion. What is neuros rationale? Is it just bc he labeled u spms? Do the research yourself and be an advocate for what u think might benefit you.

[goatgal]

I second what erash has written. From what I have learned, the line between RRMS and SPMS is not clearly defined. It may be time for a second opinion, particularly if you have many decades of living yet to enjoy.

[Juleigh21]

I was on tysabri and developed a sensitivity to it. My original neuro wanted me to try mavenclad. I got two more opinions. The doc I have now thought ocrevus was my best choice. I’ve had the first two half doses and am doing pretty well. I strongly urge you to get at least one more opinion! I’m very glad I did.

[Jesmcd2 CommunityAmbassador]

What is his reasoning behind it judymax ? 🤗💕🌠

[judymax in reply to Jesmcd2]

He says that there is no meds for inactive SPMS and let him know if symptoms get worse!

[Jesmcd2 CommunityAmbassador in reply to judymax]

Ok judymax I'm really sorry that your neuro is about to get fired!😒

It's time for you to get a new one! And time for you to be your own advocate!

There are options out there now for SPMS!

Look I'm not a a Dr. And I don't know your history or anything. But don't roll over and take it either.

Call MSAA on Monday!! Seriously!

🤗💕🌠

[Jesmcd2 CommunityAmbassador in reply to Jesmcd2]

Hi judymax it's Monday and I know that MSAA is open and will try and help you with a new MS Neurologist. Toll-Free Helpline: [phone] ext 154

Tell them I sent you, it won't mean anything, but you can tell them! 😂

Seriously, this is YOUR health! Do what's best for you! 🤗💕🌠

[judymax in reply to Jesmcd2]

Thanks for the info.....however I live in a rural area where nearest neuro is 140 miles away

[Pia7]

I just saw this but I must give my two cents. My neurologist at UCSF said Ocrevus is for progressive MS. They didn’t differentiate between primary and secondary. I have secondary and she strongly encouraged me to get on it. I’ve been on it for a year and I feel great!

[StacyOne in reply to Pia7]

Hi Pia7 - I'm new on here and I've been looking for people that are on ocrevus. My neuro just had me start it and I've had my first 2 separate infusions to start me on it in August and my first full infusion isn't until Feb. You've said you feel great - does that mean things changed for you since you started it? or does that mean things are not progressing? have you experienced any complications or become sick at all since starting? I work full time, not sure if you do but how do you handle contact with other people? I think that's enough questions for now, I have so many things to ask. I hope you'll have a minute to respond to me soon. Thanks

[Jesmcd2 CommunityAmbassador in reply to StacyOne]

StacyOne if you make a post with your questions, you will get a ton of answers!🤗💕🌠

[Pia7 in reply to StacyOne]

I haven’t had any problems at all with Ocrevus. It feels like I’m not on medication. In the past year no new symptoms and no progression. I also noticed an improvement with my fatigue. I hope this helps.