My daughter has been on Gilenya since April. Her neuro has never contacted her to check her progress. He has never called to schedule her for blood work. When and how often have some of you gone for bloodwork?
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My neuro gets blood work immediately before starting, the week after starting, once a month for the first 3 months, once every 3 months for the first 2 years and then once every 6 months after 2 years. The bloodwork picked up a couple different issues for me, both of which resolved themselves with no or minimal intervention.
Every neuro is different, but I would wonder about why your neuro has ordered no blood work at all.
I hope your daughter is doing well. -
My neuro ordered the usual tests and blood work before I started. And not again until 6 months after the 1st dose. I am not pleased about that. As a nurse I feel i should be checked more often.Comment
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Agree with all of the above. Started on 7/19 and scheduled myself for bloodwork on 7/20. My next neuro appt. is in November, but you all have got me thinking and I think I'm going to schedule bloodwork with my PCP on a monthly basis. Small town girl, I like your neurologists approach! Godspeed to all.Comment
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Thanks. I do too. It was a pain initially just because I was having so many issues (elevated liver enzymes and too low lymphocyte counts) that I was giving blood just about every 2 weeks for the first 2 months, but it's been smooth sailing from thereon out and I feel loads better knowing that she's checking up on how I'm doing like this.Originally posted by dmcmtk View PostComment
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Thanks Small town Girl. She was doing great but last Mon night she had a relapse. Numbness down whole left side, lasted about 3 days. Still some heaviness in her left foot. Gotta think maybe the Gilenya kept it from being worse. Gotta be positive, right? Hope your well.Originally posted by Just a small town girl View Post
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