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Spinal Tap and Flare-ups
Posted: Wed Nov 03, 2010 8:55 pm
by Drury
My daughter has lesions in her spine and brain and has to have a spinal tap to test for JC virus as she is due her 7th Tysabri infusion. Anyone experience flare-ups after a ST?
Drury
OH YES...
Posted: Thu Nov 04, 2010 10:49 pm
by leetz
that with avonex is why i feel i am walking with a cane today...after spinal tap it was all down hill for me...this is just my case so can only tell you about my experience...hope this helps! God bless!
Posted: Fri Nov 05, 2010 11:45 am
by L
I had a truly terrible one years ago which commenced the same evening as the procedure.
But a spinal tap for JC testing? I have had two (yearly) Rituximab infusions and Rituximab also carries a PML infection risk. I asked to be tested for the JC virus but it was only a blood test that they ordered. I get the results Thursday..
Posted: Fri Nov 05, 2010 7:16 pm
by Drury
Leetz,
It is really worrying and I am sorry you have had such a bad experience.
L
She had to have a spinal tap prior to taking Tysabri and her neuro just told her he would not let her continue her infusions (she has had 6 so far) if she refused to have one. She explained that she was fearful of a relapse and was told not to worry. I asked why she could not have a blood test only but again was told that that's the way they test there and they do not want to take any chances. It feels like Russian roulette!
Thank you for your feedback.
Drury