Hi, I saw an immunologist at the Mayo clinic and finally got some answers as to why my B cells did not come back 3 1/2 yrs since my last O infusion. She sees a lot of this and some NEVER get their B cells back. There's no rhyme or reason, possibly a genetic difference but that hasn't been worked out yet.
She thought they would come back. We repeated labs and yay! they are finally back. Now to see the Mayo neuro for discussion of DMTs
Great news! 🎉 Germinal cell centers just never grow back sometimes? I'd like to know more about it. The blood test you had that showed inflammation, is that because they are back now?
Ty for sharing!
I’m not sure what you were referring to with blood test that showed inflammation? I had immunoglobulins and a lymphocytes subset drawn
Oh, u mean the octave test I mentioned a little while ago. Could be…also could be why I had a relapse last week 🙁 though octave was done when B cells were still below normal 🤷♀️
Yes, I was asking about how octave correlated with it (I couldn't remember the test name). Very sorry to hear that you have had a relapse 😞
Thanks and Me too...the first relapse I've had since being diagnosed in 2008. Time to get back on DMTs. Now just which one.
At a recent lecture, I heard B cell depleters are ineffective/less effective in those without oligoclonal bands in their CSF. I had none. Though I wonder about the accuracy of the taps.
I also read; O bands may not be present if it's been a long time since MS became active. I am so confused about this disease.
Wow, that's a really great run though! It's hard to decide with all of the options available, and confusing information. Did your neuro give you some of their top choices to consider? I find that helpful.
Hi,
I was diagnosed way back in the late ‘90’s and b/c I had no “O” bands in my spinal fluid (after 5 LP’s followed by 5 blood patches 🙄) my diagnosis was questioned for many years b/c I had classic symptoms but not many plaques, fast forward to late 2019, right b4 the pandemic, I had stopped going to neurologist b/c of the frustration after each visit & yearly MRI’s, so it had been about 10 + yrs since seeing anyone but my PCP etc, it took her a year to convince me to see this great neurologist in our area, I finally went as I could not hide my worsening symptoms anymore, had the MRI’s, lab tests (NO LP’s!) done well I now have 40 + plaques deep in my brain, yes I was surprised, overwhelmed all the emotions, if only all the Neurologists I had seen since my dx in ‘96 saw them my progression could have been helped earlier. Anyway early on I was on Avonex after a year the side effects were too much, steroids which I had allergic reactions to then in 2020 Copaxone which I had a bad allergic reaction to, I reluctantly began Kesimpta November 2023, so 5 months now, at 60 yrs old, with Crohn's , I’ve done great! Was shocked to see my B cells at zero 😳 but proved it’s doing what it should and studies show it is a better choice then Ocrevious (? Sp) so, although I have NEVER had “O” bands in spinal fluid Kesimpta has been effective in B cell suppression! Sorry long post but wanted to give background, hope you’re better after relapse
Good news!
Great news! Keep us updated on your Neuro appt erash !
erash what exactly is B cell? My son started his first Ocrevus should be back in 2 hours. I am very nervous - dusting and doing all kinds cleaning
B cells are a type of white blood cell that makes antibodies. Ocrevus is a B cell depleter . The purpose is to get rid of the b cells to help improve MS. With Ocrevus you want zero B cells.My problem was I had stopped the Ocrevus infusion and my be cells weren’t repopulating/coming back.
So happy to hear everything came together and he's getting his first infusion! That's great news. I know you're anxious because you're a good mom (and drugs are scary, especially new ones!) Praying he does great with the Ocrevus and his MS in general!
CatsandCars Yes finally ! He came home looking very pale but said no side effects so far. Thank you again for your support.
You're welcome. Feel free to use the chat button on the bottom of my profile page if you ever need anything.
That is good news, erash ! I am curious to know what DMT they will suggest.
I’ll let you know. My appt. is May 2nd.
I think that is the tentative date of my next infusion, erash . Tentative because I am getting a blood test prior to determine my ‘ms’ activity. If it is low, then perhaps it will be a marker to delay infusion. I don’t know, but I will let you know when I find out. 
Octave, right? Let us know how that goes 🤞
Yes
Hi carolek572 which kind of blood test you get to determine if your 'ms' is active? I thought there was none.
My neuro always request a blood test prior to prescribing my next Ocrevus infusion because if my Bcells rebound slowly and there is no need for an infusion. But this does not say anything about whether ms is active or not.
This blood test is quite new, anaishunter . That is my understanding but you can go to octavebio.com for more information.
So glad to hear your b cells finally came back! That is a big relief. It will be interesting to see which DMTs are going to be recommended going forward. Have you not been on any DMT since you stopped the O? Are there any particular DMTs you are leaning towards taking?
Glad to hear that!
Great news! Glad things are looking up.😘
Great news! I am interested in what the neuro recommends next. I am going to ask mine about switching to Mavenclad before my IgG levels drop. It has been holding steady but do I stick with O and hope they don't drop or switch before it does 🤔🤷
Mavenclad the one I have been thinking about too
I am not sure if there is an age limit for Mavenclad. Since I am 55 now I thought I better look into it sooner than later.
There's not an age limit. There was an influx of older users in the FB group not long ago, but you may have to scroll the posts or search the group to find them. Most of the posts are people asking the same 5 questions over and over.
good luck! So much to think about
That is good bews about your B cells. I started Ocrevus over 6 years ago and my B cells are always really low. Last July, my T cells were low as well. Im November I caught a cold and I hadn't had one sonce 2012. When I returned from visiting my daughter in the UK in January, I got the flu. I've never had the flu before. So, in February when it was time for my Ocrevus infusion, I decided not to get it. I turned 69 in January and I told my Neurologist I think my immune system is slowing down and maybe I don't need the Ocrevus. He agreed, so I didn't get the infusion. I also feel really well and I used to get the crap gap and couldn't wait for the infusion. So far so good. I'm still feeling really well.🤞🏾
It's interesting that you felt bad during the crap gap and yet you feel great without the Ocrevus. In any case, I'm so glad to hear that you're feeling well, and I sure hope you continue to do well!
Yes, I really think it's because my immune system has slowed down and is not attacking me as much. So, although I didn't get the Ocrevus, I don't need the cells depleted.
It is great your B cells are back up. Sorry about your recent relapse, that is very unsettling. The situation seems to be complicated and confusing, even for MS. Good luck with your appointment and choice of DMT!
Erash, I'm sorry you're having a relapse after all this time. I sure hope you feel better soon. It's great that your b cells have recovered and that you can hopefully get back on another DMT in the near future. Thank you for sharing your experiences with us!
Yay!
I do have o bands and have been on ocrevus and kesimpta. I had sepsis over Christmas and that's when it was discovered how low my immunoglobin blood work is. Just met with my neurologist yesterday and we discussed iv/ig. I'm passing for now and going to wait to see what happens with my blood work. For now I will remain on no MS meds.
That’s great to hear. My sister who has MS as well tested high for JCV. The problem is that she has not taken Tysabri in 11 years. There is so much the neurologists still have no idea about. She’s a nervous wreck. I told her that I was positive when diagnosed, been taking Tysabri for 5 years, got up to 1.24 then the last 2 blood test just became negative. If I didn’t have MS I would never be a neurologist!
Keep us updated on whether you stay on Ocrevus or not or which other DMT is suggested.
I have a similar problem where my B-cells take forever to bounce back after an Ocrevus infusion (like 9+ months). My T-cells are also impacted (while they should not on Ocrevus).
I'm now on a 1/2 dose (300mg) compared to the full dose. I've been on Ocrevus since 2018 but I believe I'll have to switch to something else or run the risk of being too immunodepressed.
You should demand a blood test to check where your immune system is at before getting your next Ocrevus infusion. If your B-cells have not bounced back, there's really no need to get Ocrevus because that's all it does - deplete B-cells. It could help you reduce the cost of being on this DMT.
Thanks for your courage to stay aware and share this good news. I am just trying to make this option. Having good support healthcare really helps. With other concerns(pain,bowel and bladder) I hope we all can have courage to live, love ❤️ and pray!
Good news about your B cells erash but I’m sorry you experienced a relapse. Do you know if your immunoglobulins are normal now too? After a little over 2 years from my last Ocrevus infusion, I finally have B cell numbers in the normal range but my IgG, IgA and IgM are still below normal. 😡 I was just retested in Feb. I’m so annoyed.
My Ig’s have always remained normal. Interesting that measuring immunoglobulins is NOW standard practice with Ocrevus and warrants considerations for discontinuing the drug. Doc said, if they hadn’t been, could consider IVIG.
Of interest, the Mayo doc measured my mature B cells by looking at IG antibodies for diphtheria and tennis, vax I’d had prior to any Ocrevus, and they were present.
Yes…they should have been measuring the immunoglobulins regularly from the start but it just shows they are learning as time goes on. I’ve said for years that I’m a lab rat and my immunoglobulin mess backs that up. Since my IgG remains low, it makes me wonder if I still have antibodies from vaccines done prior to Ocrevus.
Hurrah!!!
Family who refuse to accept you have MS and demand you do what they want
