Update to: Neuro apptmnt & Ocrevus

[suznj325]

So...at this point, my very knowledgable neuro (I see her at an MS Center) says 'no' Ocrevus for me. She has several RRMS patients who are experiencing positive results. Of the many PPMS patients she sees, only 2 were 'in a place' she felt Ocrevus might do some good...she didn't go into detail, except to say neither had had any marked difference in progression.

She believes the best results with Ocrevus are/were seen within a certain age group, with a limited number of relapses & lesions. In other words, she doesn't think Ocrevus is a 'one size fits all'... she has seen very little evidence for using it with SPMS. (she sort of went off on a rant about the trials & results, etc...& I laughed & said, "Can I quote you on that?" She gave me an emphatic "No!"

We had a good discussion about medications, SPMS, & age. I'm a 69 yo female with mild -moderate weakness on my left side. Sometimes worse if I overdo, get hit with too hot/cold weather, or bouts with fatigue. I use a cane or walking stick if I'm tired or going to be on my feet for an extended period of time. Also have mild cognitive issues. Most of the time... I'm in good health & have few 'serious' issues. However, here's this SPMS diagnosis!! I told her, I'm grateful & relieved the progression has been slow...& yet, I question whether or not I should be doing or taking SOMETHING to insure that doesn't change. That's the BIG question, it appears! We had a brief conversation about Gilenya ... I see her again in September.

For now, I suppose I'm going to keep doing what I'm doing... eating healthy, just started a new Senior Circuit exercise training class, lose some weight, lower my cholesterol...stay mindful of my other health issues and... live one day at a time!!

Those of you taking Ocrevus... I still look forward to reading about your experience.

Susan

[erash]

My neuro has similar, though not quite as strong feelings about Ocrevus. She says she just wants my expectations to be realistic. I am concerned about the progression of my MS which feels like it's beginning to roll down hill faster over the last yr or so.

[jimeka]

Susan, thank you for sharing the information you received about Ocrevus. I live in the U.K. and it’s not approved for PPMS, but it’s interesting to read about everyone’s experience with it, Blessings Jimeka 🦋 🍫

[greaterexp]

Maybe when Ocrevus has been around for several more years we’ll have a clearer picture of what it can and cannot do. Of course, in 20 years, we could have a cure!

Thanks for sharing.

[Iona60]

Did she have any info on the results for long term use of rituxan for spms?

[suznj325 in reply to Iona60]

we didn't even discuss rituxan... sorry

[kdali]

Thank you for the info!

[Johngm]

I'm due for me second full infusion in December and pray it goes better than the first one that if I didn't know better I might have thought I was in a study and got the placebo as I had no results good or bad.