Repeat blood tests - Ocrevus postponed again

[anaishunter]

Just completed another round of blood tests with the same results. B cells are completely depleted which is expected but T cells are quite low. The neuro does not want me to do another round of Ocrevus yet. We are at 6 1/2 months. His plan is to recheck monthly and reevaluate as needed.

I'm not worried about MS because the first treatment is still doing what it's supposed to do. The neuro said it could be effective for 1+ year.

I'm almost happy that I don't need quite yet another dose of a $60+k medicine, even if it's fully reimbursed. If my body (I'm a tiny woman) needs it less frequently or at a lower dose moving forward, I'll take it!

Has anybody had a similar experience?

[anaishunter]

I'm not quite sure what my neuro tested for prior to the 1st Ocrevus infusion. It was all part of the MS diagnosis validation and testing which treatment could be an option. But there was many of them.

For this 2nd round at 6 months, the test included a basic blood panel and B-cells, T-cells , NK cells and various CD subtypes.

[SjWilcox]

I was on the drug trial for this drug. They gave me 500% of the dose that’s now approved. I got it every two weeks. My T cells Cells are most zero. That was ten years ago

[anaishunter in reply to SjWilcox]

thank you for sharing!

[Juliew19673 in reply to SjWilcox]

Did your T cells come back? Sorry if it's a stupid question, I'm new.

[SjWilcox in reply to Juliew19673]

T cells are about 25% back after 10 years. It’s a great drug, I recommend it. I was just on a super high dose. If you sign up for a drug trial you know what your getting in to. I have nobody but myself to blame. I consented to be a resurch subject, fortunately other people can be helped by this medication because of everyone including myself that participated in the trial.

[pamgarner in reply to SjWilcox]

thank you for doing the trial you were part of finding a cure for all of us!

[Juliew19673]

Thanks for this - I haven't had blood work sine the first double round of Ocrevus and am now wondering why.

I've felt SO much better and just had my 2nd Full dose and it went well. I did feel crappy for a few days after as if I was going to get a cold or flu, but it never appeared and went away. I'm small as well, but have begun to hang onto 106 for a week, so think that is finally coming to an end, but will go and get my blood checked tomorrow and check levels.

Thanks for sharing! It's appreciated.

[Iona60]

My blood work gets checked about one month prior to each infusion. I had to wait an additional six weeks before my first infusion as my lymphocytes were too low from gilenya.

[carolek572 CommunityAmbassador]

No, anaishunter I haven't had that experience and I would be curious to see if Ocrevus infusions will be adjusted based on blood work results. Time will tell.

[erash]

My neuro doesn’t check B or T cells. But I have read research that suggested that this could be done and that the drug does have longer effects in “tiny” people

[carolek572 CommunityAmbassador in reply to erash]

My neuro orders all blood work done prior to each infusion. However, I have had only 2 infusions ~ the first 1/2 ves, and a full one. On another note, you have made me thankful that I am a 'tiny' person, or like I think of it, a vertically challenged person! Thank you for making my day!

[pamgarner]

I also am having my 1st full ocrevus on jan 16,my dr told me I will need blood work every time before treatment but he said the hospital I have this done at will do it that day.check again for hepatitis,see if my immunizations are still effective and etc.nerve racking huh, no pun intended!

[kdali]

My office doesn’t do blood work for ocrevus.