Monday 19 November 2018

Stopped Avonex, Next Evaluation for Natalizumab and Ocrelizumab


As i had written in my previous post, I am having a tough time with fatigue and weakness in both limbs. I was admitted for a week and administered Methylprednisolone iv for 5 days.

Though my MRI does not show any new lesions since 2016, my walking, imbalance and tremors are not stable. It is getting worsen day by day. Apart from this I also had my part of UTI and low hemoglobin levels to add to it.
Had few antibiotics for UTI and iron shots for getting my hemoglobin levels to the range. Still my hemoglobin levels (10.3) are not anywhere near 13 normal range.

Coming to keep my Multiple Sclerosis in control, my neurologist was evaluating me for Natalizumab (Tysabri) or Ocrelizumab (Ocrevus). Before starting any of these, I need to perform few tests as below.

JC virus anti body, JC virus CSF (Cerebro Spinal Fluid) & JC virus serum.

I was thinking at least I will be lucky to be JC virus negative, but as feared I turned out be JC virus positive. Though I am not able to make sense about the pathological reports that has 34.50 ml/copies of JC virus found. Not sure whether it is good amount of JC virus present or less.

Anyways my hope for going to Natalizumab or Ocrelizumab started fading since these results are out. My doctor informed me that there is a huge risk of getting PML (Progressive multifocal leukoencephalopathy) which is fatal viral disease.
Mutiple Sclerosis patients testing positive for JC virus are at huge risk if they are on Natalizumab / Ocrelizumab  as they can be infected by PML.

So I am currently still under evaluation whether to go for these medications. My next appointment falls next month. Till then i am off from Avonex, since 2009.

Keeping my fingers crossed to know my next step of medications to keep my MS in control.

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