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  • #16
    Just thinking of you Susannah. Got my fingers crossed .... and I am glad you decided to go for #2..
    Be thankful. Dream Big. Never Give Up.


    • #17
      For those on Ocrevus, the average time for repopulation was 7.8 months, but ranges widely. I had my first Moderna vaccine 9 months after my last Ocrevus infusion. The second shot laid me up for about 24 hours. scheduled to get my Ocrevus infusion Monday, a month after shot #2. Based on this report, I should have decent protection, but maybe not full protection from Covid. Hopefully enough to keep me out of the hospital! -D

      Trends and predictors of peripheral CD19+ B-cell repopulation in patients treated with extended interval ocrelizumab dosing during COVID-19 pandemic

      Elizabeth Padron1, Jeffrey Hernandez2, Leticia Tornes2, Neeta Garg2
      1Jackson Memorial Hospital, 2University of Miami

      To assess the B-cell repopulation to guide time-to-infusion decision making in patients treated with ocrelizumab at extended dosing-intervals during COVD-19 pandemic.

      Peripheral CD19+ lymphocyte (CD19L) count is a surrogate marker of therapeutic efficacy of anti-CD20 therapies. B-cell repopulation (defined as ≥1% CD19L of total lymphocytes) typically occurs at 9-12 months following rituximab infusion. It has been used to guide dosing-interval in patients with multiple sclerosis (MS) and rheumatoid arthritis. However, ocrelizumab (OCR) has a fixed 6-month dosing-interval. Adjusting OCR treatment-cycle based on CD19L repopulation in clinically stable patients can minimize the risk of prolonged B-cell depletion. The aim of this study was to evaluate the trends of CD19L repopulation in patients treated with OCR at extended dosing-interval during the COVID-19 pandemic.

      This was a retrospective study of the timing of B-cell repopulation, defined as ≥1% CD19L, in patients who received OCR at extended dosing-interval during the pandemic. Data on age, gender, body mass index (BMI), disease duration, prior immunotherapy, duration of OCR, and timing of B-cell repopulation were collected. The predictors of time to repopulations were evaluated using bivariate and multivariate regression analysis.

      Twenty-seven (23 relapsing MS, 4 primary-progressive MS) patients (mean age 4113 years, 79% women) were studied. Mean CD19L repopulation was 238 92 days with significant inter-patient variability (159-539 days). All patients remained clinically stable during the extended treatment-cycle. Time-to-repopulation was longer in patients with prior exposure to drugs with immunosuppressive properties compared to those without exposure (296 vs 226 days, p=0.03). Age, gender, race, BMI and disease duration were not associated with time-to-repopulation.

      In this observational study, CD19L repopulation latency varied among patients with MS; longer interval associated with prior exposure to drugs with immunosuppressive properties. It may be possible to adjust ocrelizumab re-infusion interval based on CD19L repopulation in stable MS patients.
      Dave Bexfield


      • #18
        This is from The Washington Post. -D

        What immunosuppressed patients should know about the coronavirus vaccines

        Lindsey Bever
        April 23, 2021 at 10:09 a.m. MDT

        Cancer patients. Organ transplant recipients. Individuals with HIV. Those with autoimmune or chronic inflammatory conditions such as lupus, multiple sclerosis and rheumatoid arthritis.

        An estimated 10 million people in the United States are considered immunocompromised, including those who were born with immune-system deficiencies. It often makes them more susceptible to infections and puts them at a higher risk of experiencing a more severe outcome when they get sick.
        So it makes sense why many would want to inoculate themselves against covid-19, the illness caused by the novel coronavirus — and public health authorities have advised them to do it.

        But even though the coronavirus vaccines authorized for emergency use by the Food and Drug Administration are considered safe for people with compromised immune systems, some of them may not produce protective antibodies after vaccination, or any antibodies at all.

        Dave Bexfield


        • #19
          Dave, thanks for posting the info on repopulation and in the Washington post. I’ve been trying to follow developing news on this issue but there is soooo much that I can not see the forest through the trees! I’m glad you were able to delay infusion 9 months and I hope you get full protection. Me, I’m a bit ornery these days with the way things are moving forward to a new normal with so many people excited about end of this while I feel left behind and frankly scared about what protection I”ll have with vaccine. This is why I am a bit frustrated by the position of the doctor Haider quoted in the article as saying essentially that he thinks we shouldn’t test antibody response at this point in time bc there’s nothing we can do about it. The doctor says,

          ““I worry that if immunocompromised people are antibody positive, they might be infused with a false sense of overconfidence. And if they’re antibody negative, what do you do? I know that many patients are panicking when they realize that the vaccine ‘did not take,’ ” he added. Without being able to offer more to immunocompromised patients right now, Haidar said, “I personally think that, for now, we should restrict post-vaccine antibody monitoring to studies, so that we can understand this better.”

          in practice it seems like antibody response testing could matter a lot to MSers now. I was unable to coordinate the ideal timing for my infusion and vaccine and got vaccine 2 months post. if I were to discover through testing That my antibody response was extremely blunted, I would be more likely to continue to (ugggh) self isolate and to delay a future infusion in order to get a booster during the ideal time. Also, since when is panic to patient a reason to deny a test? Shouldn’t the patient have the choice to test to see if vaccine worked at all? I won’t even address the issue he raises about false sense of confidence ... Is it even possible with MS?


          • #20
            Hey everyone! Thanks for the well wishes and the information. I’m happy and relieved to report that I’m doing great a week and a half after the second shot.

            The first few days were hell with vertigo and nausea. Once that cleared up I had numb and tingling hands and feet, which has almost resolved. Nothing like the fatigue and barrage of ms symptoms after the first shot. I could even handle the blazing sun and 80+ degrees this past weekend during the (fun but endless) festivities for my daughter’s graduation from Regis University in Denver.

            Thank you for being here! This site saved me when I was first diagnosed and through the early years when I struggled to create a healthy active life, and make sense of myself, with ms.

            I need the inspiration again! The past year and a half has been so hard, I’m out of shape, and I’ve got some work to do. There’s a 100 mile stretch of the Continental Divide Trail I’m attempting in July. Hopefully you all will take me back in the MSers in Training section!

            ​​​​​​​thank you!!!


            • #21
              Hi Susannah,
              I got my first vaccine last Monday and have felt horrible every day since. I just want to go to bed. For me it feels more like it might be Covid rather than an exacerbation (I've had MS since 1989). But Covid and MS do share alarming similarities. Thank you for sharing that you felt bad, it makes me feel less alone! I'm glad you're feeling better now and I hope #2 is much easier for you.


              • #22
                Glad to hear the vaccinations seem to have gone well Susannah. Looking forward to having you back, I've missed the hiking stories.

                I walked my tab at the local brewery I frequent with a good bike buddy the other day. I know the people in there don't believe a word we say about the riding we've done, even though at least some of it is actually true, so I rode over to pay my tab the next day. It was the first time any of them had ever seen me on my bike and a few did seem to be a little astonished. Maybe I'll have gained some new respect, we'll see. But actually I mention this because this brewery frequently pulls a first place at the GABF for their IPA's. If you ever get down here, shoot me a line, I'd happily take you over to try some out. They really do have a couple of excellent IPA's, and other blue ribbon beers too.



                • #23
                  Glad to hear 2nd shot went well Susannah! Dee Marie I hope you’re starting to feel better by today. I got my 2nd shot A couple days ago and just felt need to be in bed blahs. Not like MS, just blah. But glad to have gotten second shot. Let the antibodies begin.


                  • #24
                    Thank you, Susannah! I'm still struggling with everything. I have what Dave would call a raging fever (98.7) and hurt all over. Just hoping it'll run its course soon. I'm sorry you've got the need to be in bed blahs and I hope you're up and at 'em soon!


                    • #25
                      Hi Dee,

                      I’m so sorry you’re feeling bad! I feel you. I was down a good 3 weeks after the first shot. After no ms for 5 years! I was sooo tired and felt pretty hopeless. For me it slowly went away. Lasted only a week after the second shot though. So there’s hope!


                      • #26
                        That's great news, Susannah! Thank you!!


                        • #27
                          Hey, I’m a week out after 2nd shot, feeling less blah, but have wobbly weak knees. Never really had it this way before. It’s MS but unclear if coincidental to 2nd shot or because I’ve been more sedate last week. I’m still glad to have gotten vaccine to get whatever antibody protection my body can muster up. Hope you all doing well too.


                          • #28
                            Here is another article on antibody formation if you're immunosuppressed - and some workarounds if the vaccines don't boost antibodies enough:


                            • #29
                              Celia, great article best! Its best overview of current options for immune compromised without antibody response I've read so far. I'm going to ck the links to see if it leads to additional resources. I don't agree with cdc position antibody testing is unhelpful.


                              • #30
                                I got the Moderna vaccine. First shot just a sore arm. Second shot and no reaction for 5 hours. Then I had the worst 48 hours and ‘not as worst 2 weeks of a big but pseudo flare.

                                fell on floor and could not use left leg. Tried to pull myself up but just pulled stuff on top of me. Was on floor for about 16 hours. Super teeth chattering chills. Visual disturbances etc. all my normally manageable symptoms came galloping.

                                glad I got the shots....but that second shot was something else.