had 3 month follow up check up for Tysabri and MS today!
Hey Dexter!
Awwwh, I'm sorry to hear about your frustrations. I saw the MS Nurse Practitioner today, so will share my information. Before I go on, I just want to say, "People who are considering Tysabri, please, I do not want this to seem negative or a reason for you not to take Tysabri."
Here is my understanding of my chat today.
We talked about the heavy leg sensation. In my case, since it was the "most severe" the night after Tysabri, and then was less the next day and went away totally in a week, she was not really concerned that it was a progression of the disease or a relapse. So, she said it was likely a side effect of the Tysabri and that as I continue to receive the infusions, we will monitor this. (Ugh, I'm hoping it was a fluke, and the 4th infusion is unremarkable).
So, I asked if the fact that I was having a "side effect" like this was any indicator that the tysabri was not working or was ineffective for me. Again, she said that there is no reason to believe this, but basically that different medications effect different people in different ways.
So, then I asked about the tysabri antibody test. She said that they (I'm assuming "they" is the practice) only does the tysabri antibody test very rarely. Basically, it is done if there is a real indication that tysabri is not effective for an individual. (So, I think this kind of corresponds to what you were told, DexterMorgan). It sounds like if you are having definite relapses/evidence of disease progression, they would be more likely to 'consider' doing this test. (I'm not sure why there is 'such' reluctance on this test; maybe it is expensive; I really don't know).
My 4th infusion will be on Friday, August 14.
(DexterMorgan, when is your next one?)
Today, I got blood work done to check for the JC virus, liver functions, and blood count. (It's my first 3 month blood check). Results pending.
Hey Dexter!
Awwwh, I'm sorry to hear about your frustrations. I saw the MS Nurse Practitioner today, so will share my information. Before I go on, I just want to say, "People who are considering Tysabri, please, I do not want this to seem negative or a reason for you not to take Tysabri."
Here is my understanding of my chat today.
We talked about the heavy leg sensation. In my case, since it was the "most severe" the night after Tysabri, and then was less the next day and went away totally in a week, she was not really concerned that it was a progression of the disease or a relapse. So, she said it was likely a side effect of the Tysabri and that as I continue to receive the infusions, we will monitor this. (Ugh, I'm hoping it was a fluke, and the 4th infusion is unremarkable).
So, I asked if the fact that I was having a "side effect" like this was any indicator that the tysabri was not working or was ineffective for me. Again, she said that there is no reason to believe this, but basically that different medications effect different people in different ways.
So, then I asked about the tysabri antibody test. She said that they (I'm assuming "they" is the practice) only does the tysabri antibody test very rarely. Basically, it is done if there is a real indication that tysabri is not effective for an individual. (So, I think this kind of corresponds to what you were told, DexterMorgan). It sounds like if you are having definite relapses/evidence of disease progression, they would be more likely to 'consider' doing this test. (I'm not sure why there is 'such' reluctance on this test; maybe it is expensive; I really don't know).
My 4th infusion will be on Friday, August 14.
(DexterMorgan, when is your next one?)
Today, I got blood work done to check for the JC virus, liver functions, and blood count. (It's my first 3 month blood check). Results pending.
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