Hi Everyone,
We're new to the boards and unfortunately new to MS, our 20 year old son was diagnosed 6 weeks ago and we have obviously been on a steep learning curve!
i was wondering if anyone would be able to offer some insights as we have reached a point of just going round in circles regarding his medication choice and not finding his MS specialist much help ( we have an appointment with a new one next week ) but his MS nurse just rang and after speaking to some of his colleagues he is strongly suggesting starting Gilenya now while we wait for the results of the JCV test.
Our preferred treatment is Tysabri as long as he is JC - or at the least a pretty low titre reading in the + range, we have chosen that as he has a pretty large legion load in his brain ( 30 odd minimum ) with a few active on the MRI and 3 on his spinal cord with 1 of those being active.
The MS neuro wasn't able or willing to comment on the lesion load other than to say it might indicate his MS is aggressive so we have sort of come to the conclusion along with the MS nurse that it's either possible aggressive or he has had it for a number of years but been symptom free. Either of those would be a reason to go with the more aggressive treatment from the beginning.
So back to why I'm finally posting, if he takes Gilenya now and comes back with a low + titre value then I'm right in assuming that his risk of PML is higher than if he hadn't taken the Gilenya? but if he comes back - JC then taking Gilenya will have no affect on the chance of getting PML?
The MS Neuro says it up to us if we want to wait to start the infusions until the JC results are back or start now and see what we think when the results are back but his first choice for treatment is Gilenya.
He says it's because it's easier to take and our son has only had one acute relapse. But he was also surprised his neuro obs were pretty much perfect. That says to me that from his MRI he would have expected some decrease so I would think we would treat aggressively now to try to keep him that way?
Sorry for the essay but any any opinions or feedback would be seriously appreciated
We're new to the boards and unfortunately new to MS, our 20 year old son was diagnosed 6 weeks ago and we have obviously been on a steep learning curve!
i was wondering if anyone would be able to offer some insights as we have reached a point of just going round in circles regarding his medication choice and not finding his MS specialist much help ( we have an appointment with a new one next week ) but his MS nurse just rang and after speaking to some of his colleagues he is strongly suggesting starting Gilenya now while we wait for the results of the JCV test.
Our preferred treatment is Tysabri as long as he is JC - or at the least a pretty low titre reading in the + range, we have chosen that as he has a pretty large legion load in his brain ( 30 odd minimum ) with a few active on the MRI and 3 on his spinal cord with 1 of those being active.
The MS neuro wasn't able or willing to comment on the lesion load other than to say it might indicate his MS is aggressive so we have sort of come to the conclusion along with the MS nurse that it's either possible aggressive or he has had it for a number of years but been symptom free. Either of those would be a reason to go with the more aggressive treatment from the beginning.
So back to why I'm finally posting, if he takes Gilenya now and comes back with a low + titre value then I'm right in assuming that his risk of PML is higher than if he hadn't taken the Gilenya? but if he comes back - JC then taking Gilenya will have no affect on the chance of getting PML?
The MS Neuro says it up to us if we want to wait to start the infusions until the JC results are back or start now and see what we think when the results are back but his first choice for treatment is Gilenya.
He says it's because it's easier to take and our son has only had one acute relapse. But he was also surprised his neuro obs were pretty much perfect. That says to me that from his MRI he would have expected some decrease so I would think we would treat aggressively now to try to keep him that way?
Sorry for the essay but any any opinions or feedback would be seriously appreciated
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