Living in UK, receive Ocrelizumab from Sheffield Teaching hospital &
LOVE reading all your contributions, news etc Always I try to share and applaud your effort to enlighten all PwMS. 👏
But after having signed up to pay annual subscription of $99 (despite my nil income); I’m left frustrated. Why? I can not create a personal sign in link… despite trying repeatedly.
Thank you for your support; it is much appreciated. I am not sure what the problem is. Please send me your email address and I will then look into it for you. I am not responsible for the technology behind this platform, but it seems to work reasonably well.
I'm on ofatumumab, and I took a 118 day break from it to get vaccinated after being on it for for 7 months. After my 2 doses of Pfizer, taken a month after starting the break and then 3 weeks later, my antibody count was very low, but measurable: 9.5U/ml. My B-cell count was also very low, but measurable: 4cells/μl. 40 days after jab 2 I got a third dose, and 3 weeks later my anitbody count was >250U/ml and my B-cell count was 17cells/μl.
I then decided, based on this information to continue my ofatumumab treatment, but dosing 12 weeks apart, instead of 1 month. 79 days after restarting on ofatumumab I tested again, and found that my antibody count was still >250/ml and my B-cell count was 6cells/μl.
So for myself I know that the third dose was effective, and I feel that my ofatumumab regiment is effective enough. Recent MRIs were unremarkable.
I plan to get my booster in January, six months after my 3rd dose, and 10+ weeks after my current injection of ofatumumab. I believe my data suggests it will also be effective in boosting my immunity from COVID-19.
Going forward, my main question is whether I should stay on an immunosuppressant, or find something that puts me at less risk. I am hoping that maintaining a low B-cell count, if not a zero count, is a good strategy to minimize my risk, and prolonging how long ofatumumab can be effective for me.
Daniel, looks like you have worked out how to hack your own anti-CD20 therapy. Please note that those B-cells circulating in your blood are likely to be naive B-cells from the bone marrow. Based on data from rheumatoid arthritis and rituximab we estimate that you need about 10 B-cells per micolitre of blood to enable the immune system to make an antibody response. Please note that recall or booster responses are better on anti-CD20 therapies than novel antigen responses to a new antigen or protein. The latter requires a functioning germinal centre in secondary lymphoid organs that are ablated in the periphery with anti-CD20 therapies.
Reflecting on this, it changes little for me. Thanks to ocrelizumab, I didn't get any antibodies from first two Pfizer doses and rather doubt the 3rd one did any better (we shall find out next week...) so pretty much stayed home anyhow. At least now I got a good excuse...
Main difference is probably the risk that ronapreve would be less effective in case of infection.
“I am therefore advising all my patients to get their 3rd dose ASAP as it is part of the primary vaccine” could you please clarify if this is all patients with MS or all patients on certain medications causing severe immunosuppression or all patients on meds that cause any immunosuppression? The guidance so far seems to me only to apply to those severely immunosuppressed needing 3rd dose?
Apologies, it is only for the immunosuppressed. Anti-CD20 and S1P-modulator treated populations. The remainder of the MS population is not severely immunosuppressed.
Looking at the decline in antibodies, everyone should either get a 3rd dose or a booster after 6 months. I frankly think the distinction is not very helpful...
I don't like to use the term booster to describe the 3rd dose. The 3rd dose can be a booster or it can be part of the primary vaccine protocol. A booster can be the 3rd, 4th or subsequent doses.
I fear the distinction creates more confusion than clarity, not even the doctors get it right according to the staff in the clinic when I got 3rd dose...
I stopped taking Fingolimod a month ago and am awaiting Ocrelizumab.
I had the second dose of the Covid vaccine a few days ago (I had covid in January, so at the moment only two doses) and now I have to wait 4-6 weeks before starting Ocrelizumab (however my lymphocyte levels are not enough).
I will start therapy in early January (2 months after the discontinuation of Fingolimod), but I am afraid of any relapses in this transition period. Are there any concrete risks?
Thank you for this! Very useful and makes me realise I still need to be very careful. Unluckily caught Delta despite being double vaccinated. This one is a scary prospect
The good thing is you now have immunity from wild-type infection that may be very useful when seeing a new strain. The immune response to the whole virus will include epitopes from antigens that are not only in the spike protein.
Yes, you would still have made T-cell responses to the infection. That is how you go over the infection. I am assuming this was PCR confirmed infection.
31 new spike proteins! I hope your folks are keeping safe in the face of this new challenge.
Living in UK, receive Ocrelizumab from Sheffield Teaching hospital &
LOVE reading all your contributions, news etc Always I try to share and applaud your effort to enlighten all PwMS. 👏
But after having signed up to pay annual subscription of $99 (despite my nil income); I’m left frustrated. Why? I can not create a personal sign in link… despite trying repeatedly.
Please help. Thank you.
Thank you for your support; it is much appreciated. I am not sure what the problem is. Please send me your email address and I will then look into it for you. I am not responsible for the technology behind this platform, but it seems to work reasonably well.
You are such a busy chap and I appreciate your offer.
jackiemacfeggan@hotmail.co.uk
I’m not ever likely to want to publish anything for others to read from my profile!
All I’d wanted was the function to comment on your threads. So maybe my profile is ok. Sorry to have taken up your time 💐
I'm on ofatumumab, and I took a 118 day break from it to get vaccinated after being on it for for 7 months. After my 2 doses of Pfizer, taken a month after starting the break and then 3 weeks later, my antibody count was very low, but measurable: 9.5U/ml. My B-cell count was also very low, but measurable: 4cells/μl. 40 days after jab 2 I got a third dose, and 3 weeks later my anitbody count was >250U/ml and my B-cell count was 17cells/μl.
I then decided, based on this information to continue my ofatumumab treatment, but dosing 12 weeks apart, instead of 1 month. 79 days after restarting on ofatumumab I tested again, and found that my antibody count was still >250/ml and my B-cell count was 6cells/μl.
So for myself I know that the third dose was effective, and I feel that my ofatumumab regiment is effective enough. Recent MRIs were unremarkable.
I plan to get my booster in January, six months after my 3rd dose, and 10+ weeks after my current injection of ofatumumab. I believe my data suggests it will also be effective in boosting my immunity from COVID-19.
Going forward, my main question is whether I should stay on an immunosuppressant, or find something that puts me at less risk. I am hoping that maintaining a low B-cell count, if not a zero count, is a good strategy to minimize my risk, and prolonging how long ofatumumab can be effective for me.
Daniel, looks like you have worked out how to hack your own anti-CD20 therapy. Please note that those B-cells circulating in your blood are likely to be naive B-cells from the bone marrow. Based on data from rheumatoid arthritis and rituximab we estimate that you need about 10 B-cells per micolitre of blood to enable the immune system to make an antibody response. Please note that recall or booster responses are better on anti-CD20 therapies than novel antigen responses to a new antigen or protein. The latter requires a functioning germinal centre in secondary lymphoid organs that are ablated in the periphery with anti-CD20 therapies.
Dr G, I think I understand pert of your response, that a 10+cells/μl count increases my chances, but can you clarify your note on the booster?
Reflecting on this, it changes little for me. Thanks to ocrelizumab, I didn't get any antibodies from first two Pfizer doses and rather doubt the 3rd one did any better (we shall find out next week...) so pretty much stayed home anyhow. At least now I got a good excuse...
Main difference is probably the risk that ronapreve would be less effective in case of infection.
“I am therefore advising all my patients to get their 3rd dose ASAP as it is part of the primary vaccine” could you please clarify if this is all patients with MS or all patients on certain medications causing severe immunosuppression or all patients on meds that cause any immunosuppression? The guidance so far seems to me only to apply to those severely immunosuppressed needing 3rd dose?
Apologies, it is only for the immunosuppressed. Anti-CD20 and S1P-modulator treated populations. The remainder of the MS population is not severely immunosuppressed.
Looking at the decline in antibodies, everyone should either get a 3rd dose or a booster after 6 months. I frankly think the distinction is not very helpful...
I don't like to use the term booster to describe the 3rd dose. The 3rd dose can be a booster or it can be part of the primary vaccine protocol. A booster can be the 3rd, 4th or subsequent doses.
I fear the distinction creates more confusion than clarity, not even the doctors get it right according to the staff in the clinic when I got 3rd dose...
Repetition, repetition and repetition and it will eventually get through ;-)
Hopefully people get their jabs quicker than that :D
I stopped taking Fingolimod a month ago and am awaiting Ocrelizumab.
I had the second dose of the Covid vaccine a few days ago (I had covid in January, so at the moment only two doses) and now I have to wait 4-6 weeks before starting Ocrelizumab (however my lymphocyte levels are not enough).
I will start therapy in early January (2 months after the discontinuation of Fingolimod), but I am afraid of any relapses in this transition period. Are there any concrete risks?
Yes, rebound post fingolimod occurs in about 30% of patients typically 6-8 weeks after stopping treatment.
Thanks for the reply. But I guess that there are no alternatives (?)
Thank you for this! Very useful and makes me realise I still need to be very careful. Unluckily caught Delta despite being double vaccinated. This one is a scary prospect
The good thing is you now have immunity from wild-type infection that may be very useful when seeing a new strain. The immune response to the whole virus will include epitopes from antigens that are not only in the spike protein.
When I did a blood test I hadn’t made antibodies to the infection. Does your reply still apply? I know I’ve sero-converted to the vaccine
Yes, you would still have made T-cell responses to the infection. That is how you go over the infection. I am assuming this was PCR confirmed infection.
Yes it was PCR Confirmed and I’m on Tysabri
Nitpick: if I remember correctly, grinch 1 was alpha (definitely in case of UK)... Delta only really hit Europe in q2
You are right! Correction made. Thanks.
Just my luck, guessing the second part of my transplant will be put on hold 👎
Just my luck, guessing the second part of my transplant will be put on hold 👎
How does a person like me, receiving Ocrelizumab via our wonderful NHS, find out if I have antibodies to Covid ?
Normally hospital will only do blood tests just before I’m due to receive infusion.
Have you heard other PwMS in UK being able to get their antibody question answered?
I have had all 3 “primary vaccines”. I’m told I’ll be given a “booster” in 5 months time. 🤷♀️