Blood test results - Ocrevus postponed

[anaishunter]

Just sharing as many of us have many questions about Ocrevus.

My neuro asked me to do a full blood panel before the next Ocrevus treatment (round 2, 1st full one). Results are in: B cells are low to non-existent (that's Ocrevus) but because several additional white blood cell types were unexpectedly low, he wants me to wait until January, do another blood test before we do Ocrevus again.

He also said, verbatim: "The protective effects of Ocrevus last well beyond 6 months, so I'm not concerned about your risk of MS relapse if your re-dosing is delayed a bit."

B12 are good on no meat diet. D is too high so cutting down on D supplements.

Just sharing because I hope everybody does a blood test before an Ocrevus treatment.

[jimeka]

Thank you for sharing. I find it interesting that everyone’s ms is different, and the way you are all reacting in different ways to your treatments of Ocrevus. Blessings Jimeka 🎄

[MS_Indestructible]

thanks for sharing. My doctor always has me have blood tests done at least a week before every infusion of Rituxan.

[erash]

What does doc think cause of odd white cells is? A side effect of Ocrevus?

[anaishunter in reply to erash]

It's the T cells that have a below normal count, which typically indicate an infection.

I've only been back and forth with the doc by email. He asked whether I've had any infection, which I have not.

I'll be with the same MS team at the hospital next Monday for several hours for the MS research (MRI + many other tests) and will ask more details.

[Jesmcd2 CommunityAmbassador]

I'm curious like erash about the white cell count anaishunter did they indicate why? And how much vit. D were you taking? 🤗💕

J🌠❄️

[anaishunter in reply to Jesmcd2]

see response to Erash.

I'm on a 10,000 IOU dose of D since May.

[Jesmcd2 CommunityAmbassador in reply to anaishunter]

A day? Perscribed? You had to have been way low. But. I'm not a Dr.😀 I hope they get your levels Figured out soon anaishunter 🤗💕

J🌠❄️

[anaishunter in reply to Jesmcd2]

Yep. In May my level was 5 (standard is 20 to 50 ng/mL). I had pain in my legs, what I can now describe as bone pain - I thought at the time it was associated with right hip arthritis. Gone within a week of D supplement.

Allergies are also gone.

[Jesmcd2 CommunityAmbassador in reply to anaishunter]

Way to go!! I take 5000 d every other day! I can tell when I miss it! Or run out for a few days.😂🤗💕

J🌠❄️

[Juliew19673]

Thanks for this - I'm scheduled tomorrow for my 2nd dose/first full dose, of Ocrevus and they have previously run blood tests just previous to infusion (an hour before).

[IFwczs]

Thank you, that was very helpful. YouTube videos say Ocrevus only works for 3 months, and people want to have infusions at least every 5 months. What I said your vitamin D level now?

[IFwczs]

New phone, sorry. I meant what is your vitamin D levek now?

[anaishunter]

IFwczs D was measured at 105 ng/mL.

My understanding of Ocrevus is that it destroys some of the B cells that are associated with MS. The treatment is set every 6 months because it takes about 6 months for B cells to mature. (I can dig the study where I read this). Of course, we're probably all on a slightly different clock. And it is all more complicated than the way I describe it.

[carolek572 CommunityAmbassador]

anaishunter I am happy to see that your neuro is taking good care of you. Yes, I have blood work done prior to O infusion. My B cells were extremely low prior to my last infusion which is okay because that is what O does. I am curious to know how long B cells remain low and will that be used to determine how often O needs to be administered.

I hope that there will be an explanation given to you as to why low white blood cell count. Keep us informed, if you can. Until then,

Keep Smiling and Stay Strong,

Carole

[dallas343]

Great advice for bloodwork this is how I uncovered my elevated liver enzymes

[rjoneslaw]

This is good 2 know now that I started on O. I just did my 1st half june 24 and my 2nd half july 9 and just did my 1st b cell blood test I'm just waiting for the results. Y 1st full dose would be in Jan