Hello everyone,
I was just diagnosed with RRMS last week (hooray for me) - after a couple months of testing, etc. I got some labs back today. I am JCV negative, which is a relief since I'm considering Tysabri.
I have some questions and would appreciate any an all tips or pointers.
My MS specialist has recommended that I go on Tysabri right out of the gate. I'm not really sure why - I didn't think to ask at our visit - she spent a lot of time highlighting its efficacy, and also said she does not prescribe injectables because they're no more effective than pills. She did warn me about PML risks and ordered a JCV ratio test. At the time we were unsure about my JCV status and she was recommending Gilenya as a second choice depending on how I felt and what my JCV risk came back at.
So now that I've come back JCV negative, I have an (admittedly easier) decision to make and I am pretty sure that she will be recommending I go with Tysabri.
First, are there any statistics about how long people are recommended to (or typically stay on) Tysabri if they are JC negative?
I've seen the PML risk factors laid out for 1-2+ years on Tysabri and how it changes geometrically over time if you are JCV+, but I haven't seen such a thing for JCV-. Is there such a thing? Are there quantified risk factors for JCV-? I realize, of course, that my JCV-/+ status could change and that will still require monitoring.
Second, I've seen some suggestions that Tysabri is a pretty high-powered drug that most people seem to be put on after failing other therapies. I didn't think to ask this at the visit because there was just so much information coming at me, but what would the purpose be for recommending such a drug the first time out? Aggressiveness? Lesion load? Any thoughts welcome. (I suspect lesion load will be it in my case, even though prior to this incident I've had no real reason to believe anything was wrong with me).
Third, I do have insurance, but I'm curious about out-of-pocket costs. I realize these can vary across the board, but I'm trying to prepare myself for how this could impact my wallet. What are peoples' typical out of pocket costs with private employer-based insurance, to the extent that can be generalized?
Fourth, is there any hard data to suggest that coming off Tysabri itself can trigger serious relapses? I've seen some scare stories, but I'm not sure what to think.
Last, has anyone JCV- gotten PML while on Tysabri?
I'm sure I'll have other questions, but that's it for now. Thanks for reading.
I was just diagnosed with RRMS last week (hooray for me) - after a couple months of testing, etc. I got some labs back today. I am JCV negative, which is a relief since I'm considering Tysabri.
I have some questions and would appreciate any an all tips or pointers.
My MS specialist has recommended that I go on Tysabri right out of the gate. I'm not really sure why - I didn't think to ask at our visit - she spent a lot of time highlighting its efficacy, and also said she does not prescribe injectables because they're no more effective than pills. She did warn me about PML risks and ordered a JCV ratio test. At the time we were unsure about my JCV status and she was recommending Gilenya as a second choice depending on how I felt and what my JCV risk came back at.
So now that I've come back JCV negative, I have an (admittedly easier) decision to make and I am pretty sure that she will be recommending I go with Tysabri.
First, are there any statistics about how long people are recommended to (or typically stay on) Tysabri if they are JC negative?
I've seen the PML risk factors laid out for 1-2+ years on Tysabri and how it changes geometrically over time if you are JCV+, but I haven't seen such a thing for JCV-. Is there such a thing? Are there quantified risk factors for JCV-? I realize, of course, that my JCV-/+ status could change and that will still require monitoring.
Second, I've seen some suggestions that Tysabri is a pretty high-powered drug that most people seem to be put on after failing other therapies. I didn't think to ask this at the visit because there was just so much information coming at me, but what would the purpose be for recommending such a drug the first time out? Aggressiveness? Lesion load? Any thoughts welcome. (I suspect lesion load will be it in my case, even though prior to this incident I've had no real reason to believe anything was wrong with me).
Third, I do have insurance, but I'm curious about out-of-pocket costs. I realize these can vary across the board, but I'm trying to prepare myself for how this could impact my wallet. What are peoples' typical out of pocket costs with private employer-based insurance, to the extent that can be generalized?
Fourth, is there any hard data to suggest that coming off Tysabri itself can trigger serious relapses? I've seen some scare stories, but I'm not sure what to think.
Last, has anyone JCV- gotten PML while on Tysabri?
I'm sure I'll have other questions, but that's it for now. Thanks for reading.
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