Ocrevus or not?

[kycmary]

Finally talked with my Neuro she is not going to put me on Ocrevus doing the Tysabri washout by having Tysabri every other month for the next 4 months then nothing for 4 months then I go back to see her in late April. I'm not sure about this she is the one who started about Ocrevus then tells me she is not using Ocrevus... go figure I need to think about this for a while.

[Kenu]

Never heard of Tysabri every other month 🤷🏼‍♂️. Did you have problems with it? Why not just change and then you are going off, is this to wean you off then switch 🤷🏼‍♂️ You have me confused. 🐾🐾. Ken

[kycmary in reply to Kenu]

I am confused also I sent her a message about this I'll let everyone know what happens Mary

[dianekjs]

Hi kycmary , is your neurologist an MS specialist? I'm just asking because like Kenu , I've never heard of anyone doing the every other month wash-out with Tysabri, it shouldn't be necessary. As for Ocrevus, I've been on it a little over a year now and love it, in spite of the infusion reactions I am prone to. The data show it to be one of the safest MS treatments currently in use and also one of the most effective at inhibiting the development of new lesions. I have PPMS but have had clear improvement in numerous symptoms and just feel more "normal" than I have in a long time. My disabling fatigue lifted remarkably after three months or so on the drug, and that alone feels like it's given me my life back. After the initial two-part induction course (two half-doses two weeks apart) it's just an infusion every six months, nothing to do in-between. Most people have been tolerating it very well with few side effects other than occasional infusion reactions that are generally mild and easily managed.

There's a YouTube video about Ocrevus that I can strongly recommend and that is well worth your time. It's presented by Timothy Vollmer MD, one of the leading experts on ocrelizumab who was involved in the drug trials and directs a major MS clinic. It is excellent and packed with useful information about Ocrevus as well as the other MS DMDs currently in use. You should find it helpful in learning about and comparing all of the various treatment options. youtube.com/watch?v=J4prsO-...(Not working as expected?)

[kycmary in reply to dianekjs]

She is not & I'm not sure why she is doing it this way.

[dianekjs in reply to kycmary]

Can you possibly get a referral to an MS specialist for a second opinion and general assessment? General neurologists really aren't experts in MS - and the treatments and approach are changing all the time and can be challenging to stay on top of even for the neurologists that only treat MS. When you're dealing with something as life-critical as the central nervous system, It's very reasonable to seek additional input before making major treatment decisions.

[ssdw1958]

I do have to say when I start the Ocrevus I had been on Tecfidera and I had to be off of that for a month before taking the Ocrevus. Let me tell you I felt better being off of the Tecfidera. And yes my legs are not the greatest at night but that just could be me. But like the other two people spoke about your other medicine 4 months is a long time. I would look into that.

[maryserv]

I recently switched from Ty to O because my doc refused to infuse any more. I have been JC+ for over a year and was on Ty for 10 years. He is a head researcher at an MS clinic. My JC titers weee never over 1.0, but because of the length time of time he put a stop. I elected O. There was NO washout period. I just started O a month after my last Ty infusion. You need to change to a specialist.

My sister is also switching to O for the same reason. Her doc will handle it the same way, start O a month after last Ty infusion. He is from a different medical school/MS research group.

The tysabri rebound effect is something to consider. It is real. If I was a week late getting tysabri I had symptoms start to come back. I was once 3 weeks late because of insurance. Things were not good when that happened.

Get another doctor. Where do you live?

[kycmary in reply to maryserv]

I live in Northern KY & I am trying to get in to UC to see a specialist there

[maryserv]

UC Waddell Center?