b-cells?

[Momjules]

I have had my mris and blood work .

I do not have any B cells left!

My doctor says this happens with ms but I’m upset.

I’m on Octavis which is overdue due to a cold or something.’

I’m ready to just stop my meds!

Opinions?

[kdali]

Sounds like the medication is doing what it is suppose to do, get rid of those mean B cells. An infusion delay is reasonable when you are sick/have a cold. Was your scan ok?

You can search this site for posts and replies about B cells to learn more from others taking this type of drug. MSAA has information on their website about medications also.

[DM0329]

It's scary but MS is scary too IMHO.

Adhere to MS Specialist advice and stay on a DMT for life. I switched to Aubagio, it's both a B and T cell inhibitor, with over ten years of proven effectiveness AND safety. Research Research Research!

Happy Holidays! 😇🙏🙂🤞🎄🎅

[CatsandCars]

I don't blame you for being upset. I always found it unsettling that my MS therapies always made my blood work look "abnormal". Has your neuro come up with a plan? Maybe you will get a "vacation" from meds until your B cells rebound somewhat. It's frustrating that your doctor sounded nonchalant about it, but it's probably a good sign. If your doctor sounded freaked out, then I would really worry!😊

I hope everything works out for you.

[carolek572 CommunityAmbassador]

I would let your neurologist know of your concerns with your current DMT,  Momjules , because changing DMT, let alone stopping one, is an important decision. Good luck with whatever you decide to do.

[anaishunter]

@monjules It looks like you're on a DMT that's designed to kill B-cells. so it works. If this is the case, it is actually great that your neuro checks your B-cell levels and might discover that you don't need the DMT as often as the majority.

It's my case. I've been on Ocrevus for 5 years. It is designed to kill B-cells with an infusion every 6 months. In my case, I get it more like every 8 months because at 6 months, B-cells have not bounced back so no need for treatment.

Check with your neuro but again, it's a very good thing that your neuro runs blood tests prior to scheduling another round of DMT.

[Momjules]

hi

I’m tired of this ms and diabetes and heart failure and heart disease. I’m sorry but I’m getting over a cold or flu or whatever it is so I’m depressed

My regular doctor is seeing me every 4-6 weeks now because he has known me for six years.

My neurologist is a great woman

I’m tired of sickness and meds

Every minute is a pain filled time

It’s been 16 years since all these diseases kicked in.

I’ll be staying on my ms med but every once in a while I need a break.

I’m 61 years old but can barely get through the day.

I’m strong so I’ll get by but sometimes I need a break

You are all wonderful people and I wish everyone happy holidays!

[anaishunter in reply to Momjules]

ms is hard. you're on the right forum to vent. It looks like you have a good team of doctors around you that you can trust.

One day at a time. Like you, I've been fighting a cold fo 3 weeks now. It's getting me tired. And I'm so frustrated. My husband got over it in 5 days (i gave it to him).

Sending you a big hug of support.

[Momjules in reply to anaishunter]

Thank you so much!!

Virtual hugs can really be felt!

[309Ygi in reply to Momjules]

Awh I was in that same perspective mind set ! 9 years a go being a drunk with all these shits hitting the fan . I started just listening to Anna kujawa on YouTube and facebook . The course InMiricals . And wow my stinking thinking getting in the way of a healing . . I am alcohol free sober . Survived stage 4 mestatic breast cancer 2020/2021 diagnosed in rrms 2021 . But had it since my 17birithday 87 . Either I can look at all this nightmare or we can come to realization we are not a the body . You are a spirit . There is no sickness and there is no death ! We are untouched . You know what ever it is that’s causing disruption I turn her on and omg it is what I’m dealing with . And I’m shown how to see it through divine eyes mine are a little dusty and full of illusion.

Sunset

[Momjules in reply to 309Ygi]

Congratulations on your sobriety!!

Good luck to you!!

[Momjules]

hi. Momjules again

I had that shot last year or so. Eveshhield?

It replaces antibodies

I recently read it wasn’t what they thought it was.

I also take warfarin and last week my heart doctors office called to see if I was taking it.

I am but my blood shows no warfarin in it!

I said I take it everyday so tomorrow I go for a inr blood test to see if it’s better.

It’s just crazy how much a body can take.

[carolek572 CommunityAmbassador in reply to Momjules]

Keep the faith, Momjules 🤗

[Momjules in reply to carolek572]

👍🙏🏻

Thank you!!

Same to you and yours!

[309Ygi in reply to Momjules]

I feel a sense of relief from you . On top of the who’s in charge here . lol you soo happy it’s all resolvable. Keep your head up keep your thoughts positive and laugh at the manDane bull crap our body’s attempt to want to ( gift ) us . Laugh that’s the gift to it !!

An angel Indo blue reminds us we are in control

[Elizt3]

I thought it’s good if our B cells are at zero when we are on a B cell depleter? I’ve been on one (Ocrevus) for almost 5 years and my B cells have been at zero the entire time.

Btw, I received Evusheld as well. I think that was meant to protect us from COVID (give us antibodies against it?). I hadn’t heard that it didn’t pan out?

[sashaming1]

Ask your Dr if there is another DMT that leaves B Cells alone.

[CatsandCars]

Hello, I was just looking at my white blood cell counts (lymphocytes) since I am on Ocrevus. I read that only 2% of our white blood cells are actually in circulation at any given time. So it's possible you do have some B cells that just aren't showing up on tests. They can be in your tissues and lymph nodes as well as your blood. Maybe it's something you could ask your doctor about if you're still concerned.

[309Ygi]

I wonder ! there is a vitamin supplement that builds red blood cells look at vitamin cottage or sprouts health food stores it does help

[IFwczs]

Neither did I have any B cells before or during the Ocrevus treatment. I was gradually getting worse on Ocrevus - fortunately, I stopped it. It is supposed to kill off only a small subset of T cells but all of the B cells. So what exactly is the purpose?

[Momjules in reply to IFwczs]

merry Christmas!

This whole sickness thing gets very overwhelming at times

I am now two mothers over my infusion date

Why don’t I care?

[IFwczs in reply to Momjules]

Do you have RRMS or PPMS?

[Momjules in reply to IFwczs]

My doc thinks is Ppms

[IFwczs in reply to Momjules]

If you have had no relapses, it cannot be RRMS.

[Momjules in reply to IFwczs]

I have side pain from a lesion sitting against my spinal cord

There must be a nerve trapped somewhere

This pain has been around for ten years

I’ve had 4 or 5 nerve blocks

Nothing has worked

My leg will drag by the end of the day or before if I’m shopping

Only one to two stores and I am done

My doctor plays around with my status

She told my hubby I have bad ms yet I can walk

I should use my cane for balance but it embarrasses me so I use a shopping cart

I take opioids for pain and play the game of testing for a positive blood test

[Momjules]

monthes!!!

Not mothers!😂😂😀😬