Many people with multiple sclerosis on ocrelizumab or rituximab are wanting to switch to another disease-modifying therapy. In this Newsletter I explain why and how to do it.
Would it be possible to have a link at the bottom of each MS-Selfie newsletter to a simple glossary of terms. For example, I don't know what an 'anti-CD20' is.
I’m really intrigued about so many people being misdiagnosed with MS. Are there other conditions that actually cause lesions on the spinal cord and brain? What are they?
Ocrevus is due in 5 weeks. Boosters for covid will start around September they say. Have already had the 2covid jabs and I am taking it as won't have made much of, if any kind of response to them. Are you saying we could postpone Ocrevus, get the booster, and then how long for the Ocrevus? The due dose will be my 2nd full dose at the same time. TIA
Hi, you wrote that "when someone fails a high efficacy DMT such as an anti-CD20 therapy it is always reasonable to take a step back and review the MS diagnosis".
I was diagnosed in January 2016, and since then have had 8 relapses (3 of them Optic Neuritis) treated with high dose Solu-Medrol: 4 while on Tecfidera, 3 while on Ocrevus. Even if we overlook the first relapse that occured 3 months after starting Ocrevus, it seems that this DMT not as efficient as it should be. NMO test I did a few years ago was negative. Should I be tested for MOG? Is it better to be treated with plasma infusions? What did you mean by taking a step back? What other diseases can cause relapses and clearly not be affected by both Tecfidera and Ocrevus?
I am switching right now. I was on Mayzent for over a year and my white counts, all of them tanked so low i was helpless against anything. I had a series of things that happened all within a 2 week span of time than convinced me to stop taking it... First, i I managed to catch and rip a fingernail off and it went down tot he quick and bled. this led to an infection of the cuticle. It took literally 6 weeks to get that cleared up. While that was going on, i had already been switching things around in my diet to eat healthier so granola instead sugary cereals were added to my diet and i managed to crack a tooth.. ugh. It immediately became accessed. I saw my primary care doc on a Saturday who prescribed 2,000,g of penicillin a day for 10 days to knock the infection down so i could see a dentist. I had no response to this. NONE. whatsoever. nothing. While i was on this antibiotic, i developed a huge pimple up inside one of my nostrils.. when i say huge i mean it was so large it blocked the entire nostril. I have never had anything like that before in my life and I am 63 years old now. so yeah. I decided to stop take the Mayzent to heal my body. The tooth is better, the nostril is clear, the cuticle is healed and my skin is starting to clear up as well.. that's another thing i was having issues with the entire time I was on the the Mayzent. My skin.,. pimples everywhere.. all over my face.. down my neck, across my chest.. It was maddening.. It was like i was 14 again and going thru puberty.. My lymphocytes were as low as 420 which is way too low.. and over all white counts as low as 3500.. nope not doing that again.. looking to start on Copaxane soon. Had been on Aubagio just prior to Mayzent and had 3 relapses and saw quite a bit of progression on that so this is my last choice i guess
I have a question about smoldering MS. From my readings of the medical literature as a person with MS, my understanding was that smoldering MS appears to be linked to brain volume loss and that a recent study suggests that Ocrevus might do a good job controlling for brain volume loss. I suppose my question is, do we really know at this point that one DMT is better than Ocrevus in this regard?
I’m in the opposite position, just about to transfer from Tecfidera onto ocrevus as active mri and 2 relapses in 6 months. Asked about capaxone but was strongly advised to go for a stronger DMT either - gilenya, cladribine or ocrevus. Trying to pick the best of a bad bunch as cancer is always a concern.
“Please note if you are NEIDA (no evident inflammatory disease activity) and you are getting worse in terms of disability progression, you probably have smouldering MS.” What’s the current state of play re promising trials to address smouldering MS? Barts have Sizomus and DoDo (perhaps others), are other research teams / pharma doing anything similar ie testing therapies to address smouldering MS?
I’m 69 years old and have been on Ocrelizumab for the past three years for my PPMS. At what point (age) should I stop taking infusions. My MRI’s show nothing new or increasing. I am seeing a lot of progression, probably age related.
I believe you had hypothesized in the past that OCB- folks may have less positive effect than those who are OCB+. I believe OCB- had even been disallowed in the trials. Any thoughts regarding that now? Data?
Also...I am a fast re-populator of B-cells. Doc recommends a switch to RTX at 2000mg. I say meh...for one, pandemic. Another...I think you had theorized OCR might be 6x the strength of RTX?
My first full (and my last as I have quit due to new and worsening symptoms) was August 2020 and as of June 2021, my B cells are at 0.10. I haven’t gotten the COVID vaccine for that reason. I’m home alone all day and can’t afford the risk of a bad reaction. In two months, I anticipate having someone home with me and then I’ll get vaccine.
Would it be possible to have a link at the bottom of each MS-Selfie newsletter to a simple glossary of terms. For example, I don't know what an 'anti-CD20' is.
Thank you so much for all that you do.
I’m really intrigued about so many people being misdiagnosed with MS. Are there other conditions that actually cause lesions on the spinal cord and brain? What are they?
Ocrevus is due in 5 weeks. Boosters for covid will start around September they say. Have already had the 2covid jabs and I am taking it as won't have made much of, if any kind of response to them. Are you saying we could postpone Ocrevus, get the booster, and then how long for the Ocrevus? The due dose will be my 2nd full dose at the same time. TIA
Hi, you wrote that "when someone fails a high efficacy DMT such as an anti-CD20 therapy it is always reasonable to take a step back and review the MS diagnosis".
I was diagnosed in January 2016, and since then have had 8 relapses (3 of them Optic Neuritis) treated with high dose Solu-Medrol: 4 while on Tecfidera, 3 while on Ocrevus. Even if we overlook the first relapse that occured 3 months after starting Ocrevus, it seems that this DMT not as efficient as it should be. NMO test I did a few years ago was negative. Should I be tested for MOG? Is it better to be treated with plasma infusions? What did you mean by taking a step back? What other diseases can cause relapses and clearly not be affected by both Tecfidera and Ocrevus?
- hypogammaglobulinaemia still within safe limits, no problems with tolerability, not getting worse, no evident inflammation
Is there a case to consider switching?
I am switching right now. I was on Mayzent for over a year and my white counts, all of them tanked so low i was helpless against anything. I had a series of things that happened all within a 2 week span of time than convinced me to stop taking it... First, i I managed to catch and rip a fingernail off and it went down tot he quick and bled. this led to an infection of the cuticle. It took literally 6 weeks to get that cleared up. While that was going on, i had already been switching things around in my diet to eat healthier so granola instead sugary cereals were added to my diet and i managed to crack a tooth.. ugh. It immediately became accessed. I saw my primary care doc on a Saturday who prescribed 2,000,g of penicillin a day for 10 days to knock the infection down so i could see a dentist. I had no response to this. NONE. whatsoever. nothing. While i was on this antibiotic, i developed a huge pimple up inside one of my nostrils.. when i say huge i mean it was so large it blocked the entire nostril. I have never had anything like that before in my life and I am 63 years old now. so yeah. I decided to stop take the Mayzent to heal my body. The tooth is better, the nostril is clear, the cuticle is healed and my skin is starting to clear up as well.. that's another thing i was having issues with the entire time I was on the the Mayzent. My skin.,. pimples everywhere.. all over my face.. down my neck, across my chest.. It was maddening.. It was like i was 14 again and going thru puberty.. My lymphocytes were as low as 420 which is way too low.. and over all white counts as low as 3500.. nope not doing that again.. looking to start on Copaxane soon. Had been on Aubagio just prior to Mayzent and had 3 relapses and saw quite a bit of progression on that so this is my last choice i guess
Can anti-CD therapy be a lifelong treatment? And what about de-escalation to a first line treatment like interferon?
I have a question about smoldering MS. From my readings of the medical literature as a person with MS, my understanding was that smoldering MS appears to be linked to brain volume loss and that a recent study suggests that Ocrevus might do a good job controlling for brain volume loss. I suppose my question is, do we really know at this point that one DMT is better than Ocrevus in this regard?
I’m in the opposite position, just about to transfer from Tecfidera onto ocrevus as active mri and 2 relapses in 6 months. Asked about capaxone but was strongly advised to go for a stronger DMT either - gilenya, cladribine or ocrevus. Trying to pick the best of a bad bunch as cancer is always a concern.
“Please note if you are NEIDA (no evident inflammatory disease activity) and you are getting worse in terms of disability progression, you probably have smouldering MS.” What’s the current state of play re promising trials to address smouldering MS? Barts have Sizomus and DoDo (perhaps others), are other research teams / pharma doing anything similar ie testing therapies to address smouldering MS?
I’m 69 years old and have been on Ocrelizumab for the past three years for my PPMS. At what point (age) should I stop taking infusions. My MRI’s show nothing new or increasing. I am seeing a lot of progression, probably age related.
I believe you had hypothesized in the past that OCB- folks may have less positive effect than those who are OCB+. I believe OCB- had even been disallowed in the trials. Any thoughts regarding that now? Data?
Also...I am a fast re-populator of B-cells. Doc recommends a switch to RTX at 2000mg. I say meh...for one, pandemic. Another...I think you had theorized OCR might be 6x the strength of RTX?
My first full (and my last as I have quit due to new and worsening symptoms) was August 2020 and as of June 2021, my B cells are at 0.10. I haven’t gotten the COVID vaccine for that reason. I’m home alone all day and can’t afford the risk of a bad reaction. In two months, I anticipate having someone home with me and then I’ll get vaccine.