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Here is My Question:
Hi there. Love reading all of your posts. Truly helpful. I’ve been on and off Tysabri since 2015. I have been off during my 3 pregnancies. The first 2 postpartum experiences were great. The last postpartum period I experienced a lot of small new brain lesions. After resuming Tysabri for 6 months I had stable MRIs once again. Since my diagnosis in 2014 my entire Cspine has lesions (very scary) along with a few in my t spine. And more recently more brain lesions, initially I only had a few in the brain. I have been quite well despite all of this. Like I said-birthing my 3 children and nursing them well after 2 years old! I am extremely active and have minimal symptoms. Do you have patients with many spinal lesions who still do very well? My next question is- if I switch to Ocrevus do you think I will be worse off than I have been on Tysabri? I just got a positive JCV of .75. If I switch to Ocrevus I worry it will not be as effective. I’m very nervous. My neurologist thinks it will just fine for me. Thank you so much! Answer: There are really 3 issues involved with your decision making:
First, based on your report, your only disease activity (by MRI only) occurred after stopping Tysabri for pregnancy. This is expected and not a sign of breakthrough disease or treatment failure. Second, you do have an increased risk of PML and this risk is probably too high if you have received an immunosuppressant treatment in the past. If this is the case, you should probably stop Tysabri now. If you have received prior immunosuppressive therapies or chemotherapies, you can probably lower your risk of PML to an acceptable range by more frequent MRI monitoring (every 6-12 months with no contrast needed and just brain imaging) and increasing the interval between infusions from every 28 days to every 42 days. We know from a prior study that the efficacy of Tysabri is the same when administered every 42 days after a year of treatment given every 28 days. Third, Ocrevus has its own set of serious risks, mostly increased infections, particularly with prolonged treatment. We do not know if it is more effective than Tysabri because there has not been a head-to-head clinical trial and it is not possible to compare the trial results. Lastly, anecdotally patients do report feeling better on Tysabri and often tell us this feeling disappears after stopping Tysabri and starting Ocrelizumab. I would not weight this information too strongly because of the usual bias in these anecdotal reports. We less often know of people stitching from Ocrevus to Tysabri so we do not know if these individuals would report the same improvement in symptoms or well-being. I hope this helps with your decision making. Remember, there are specific reasons your MS specialist may want to switch you to Ocrevus that we are not aware of based on your message. For one thing, many specialists feel uncomfortable treating people with MS who are JCV index positive. This is understandable if there are other excellent therapies available without significant risks. Unfortunately, all therapies have risks; we want to ensure that the benefits of a therapy out weight the potential risks and you are aware of the risks for informed decisions. PLEASE NOTE: This information/opinions on this site should be used as an information source only. This information does not create any patient-HCP relationship, and should not be used as a substitute for professional diagnosis and treatment. Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition. Revere P (Rip) Kinkel, MDProfessor of Neurosciences Director of the Multiple Sclerosis Program University of California San Diego #multiplesclerosis #MS #Ocrevus #Tysabri #PML Comments are closed.
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PLEASE NOTE: This information/opinions on this site should be used as an information source only. This information does not create any patient-HCP relationship, and should not be used as a substitute for professional diagnosis and treatment. Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition.
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