Ready for remission and wondering if Ocrevus is the best?

[smalltowngirl]

After dx in March and soon after starting Ocrevus, I figured these little “piddly” MS symptoms would go away. Ocrevus is supposed to be groundbreaking. My leg numbness went away, and I started to drive again so that was a positive. I’ve had a bloody nose that won’t heal the entire time I’ve been on it. Mentioned to doc but not concerned, so whaddya do? 🤷🏻*♀️

I also got a skin infection just randomly on my stomach of all places, that turned into cellulitis (FYI: I am truly kind of OCD about cleanliness, but I guess I let some germs in!) Again, skin infections are a side effect of Ocrevus.

Since then, I’ve developed tremors, muscle spasms, twitching and jerking, and now for two weeks, the worst burning leg pain. Called doc, reported new symptoms that now also include wobbly, jello legs. He wants to repeat imaging, so I had my C-spine MRI today and will have the brain/T-spine MRI tomorrow.

I’ll keep y’all posted. I feel quite defeated. If this wonder drug can’t keep new lesions away and can’t slow disease progression, what else is there? Since I’ve had no periods of remission, is this an early indication that I’m likely PPMS? Just pondering some of these thought tonight.

Thanks for reading!

[Myoak]

Hello!

Reading your post and pondering....

I have so little to offer, only a few thoughts.

First, you are definitely going to the right place... Cleveland Clinic.

Second, people can develop neutralizing antibodies to Ocrevus although at a lower rate than with rituximab. In one statement Genetech said 7% in a trial of primary progressive MS patients developed neutralizing antibodies. In another trial they said it was 1.7%. Supposedly, even lower rates in RRMS patients.

So on the surface, smalltowngirl, it seems unlikely, mathematically speaking, that you would develop neutralizing antibodies but then again your symptoms may suggest it. Definitely have a conversation with your doctors about that possibility.

Next, please consider that even though Ocrevus begins have therapeutic effect within days it may not reach peak effectiveness that quickly. Remember, it is killing selected B-cells, so-called CD20 B-cells, ones thought to be causing MS damage. It may take more time and more doses to get on top of your MS. Again, discuss that point with your doctors when you can.

Cleveland Clinic could test and check what your CD20 levels are if they wished. They probably won't but if they do be sure to find out if they are billing you and how much it costs. Possibly, CD20 is not reduced enough, yet.

If you are developing neutralizing antibodies they will stop Ocrevus. Personally, I would not consider anything but Tysabri if you have to quit Ocrevus. for me, the risk - reward of other meds just not add up.

You have to make your own decision and you have to be able to sleep with your choice. Don't let me talk you into anything. PLEASE!

I am giving you my opinion and my thoughts, only, not suggestions!

Even if I was JCV+ I would opt for Tysabri because dose extension de-risks for PML. However, if you test positive for JCV they will try their best to dissuade you and offer something else. Call their bluff - tell them its Tysabri or nothing. you can go on it safely for 2 years even if you are JCV+ and not on dose extension, getting infusions every 4 weeks.

But let's not get too far ahead. It may simply be a matter of giving Ocrevus time.

That said, there does seem to be something going on which needs to be identified.

Please, work closely with your very capable doctors to resolve this situation.

You are not the complaining type but you will have to let them know what is happening so they are involved.

I am praying for you in this moment that God comfort and strengthen you, give you wisdom and favor, knowledge concerning your affliction, and grant your doctors insight to resolve it.

Blessings to you!

[KoKo]

Since then, I’ve developed tremors, muscle spasms, twitching and jerking, and now for two weeks, the worst burning leg pain. Called doc, reported new symptoms that now also include wobbly, jello legs.

Hi smalltowngirl

Been checked for UTI?

UTI's can bring on numerous symptoms that might normally be "hidden".

In any case, wishing you the best.

Take Care