Originally posted by palmtree
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Palmtree, if the administration of the DMT is a problem, isn’t that a legit reason for you to switch? And as the patient, isn’t the choice ultimately yours, if you feel that strongly about it? I am sending you peace and good luck in your effort.
Originally posted by palmtree
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My neuro says Tysabri does not really suppress your overall immunity that much. Rather, it focuses very specifically on two essential areas: the Central Nervous System (CNS) and gut. To prevent attacks on the Central Nervous System that happen in MS, Tysabri alters the “shape” of certain immune cells. Like square pegs trying to enter a round hole, the immune cells can no longer get through the “gate” to the brain and spinal cord and attack neural pathways, causing the inflammatory damage found in MS. The immune cells are only blocked from the CNS and parts of the gut. They continue to defend other parts of the body.
BUT WITH PML, because immune cells are locked out of the CNS, they aren’t there to defend the brain against PML. This is why long term usage of Tysabri could make you more vulnerable to PML if you are not monitored regularly for JCV, which always seems to be present in cases of PML. This includes the one person in Germany who developed PML on Ocrevus (after being on Tysabri for 3 years). That person was JCV positive.
So if, during routine JCV testing offered for free to everyone who is taking Tysabri, your JCV count goes up, your doctor should take additional steps to protect the patient. This includes extending the interval between doses, other types of monitoring, or if really needed, stopping Tysabri.
There is no question - Tysabri is powerful and potentially dangerous like other immune suppressants, but because routine testing for JCV is available for free to anyone on Tysabri, my concern as a patient is actually more about taking good care of my liver. Control what we can?
Sorry for this detour and for repeating information you may already know. I continue to send supportive vibes as you make your decision about switching
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