Important information, Kyle. Thanks for adding this to the pot. All the best for plan B!
I just talked with my doc. Here's what I took away from the conversation.
Fetuin-A, Osteopontin & Total Cell Count are bio-markers for Disease Activity (DA). The test for bio-markers is an additional way to monitor MS. Positive findings are not necessarily an indication of a predictable or precipitous progression of the disease. There is also no correlation between DA and present or future lesions.
This test is just another level of monitoring. The research I read says that in patients being treated with Tysabri, these bio-markers, and thus DA, should be at very low levels. In my case the elevated levels indicate that the Tysabri was not as effective as it was supposed to be. My levels were not elevated in previous LP so the Tysabri was likely working for a while. Now that we know it's not we move on to Plan B.
Kyle
Thanks for following up with what you found. Hope the consult nails down some answers for you! I have to admit, you have me quite curious about this now as well.
Here's the research I could find. If anyone is interested in more that the abstract I can email the whole study.
http://www.ncbi.nlm.nih.gov/pubmed/23439582
I'm going to talk with my neuro tomorrow about the clinical implications of "disease activity" that isn't manifesting in new lesions...
Kyle
Hey Kyle. I did have a meander on Google with various combinations of the key words, but couldn't seem to find what I think you're after. And as most of the words in your question are brand new to me, I certainly didn't want to pass along anything I was unsure about. Hopefully someone will have something more constructive to add!
But I'd meant to reply anyway with commiserations regarding the medication upheaval. Getting these various results has to be frustrating. MS sure knows how to keep things 'interesting'. I'll certainly be keeping my fingers crossed that there's no insurance shenanigans that crop up. At least you have it in writing!
Well I chatted with my do. Today and he was concerned about these levels. He said that even if I had not tested JCV + these mean that Tysabri was not getting the job done.
If Tysabri is not working than I'm guessing Tecfidera is off the table. So Rituxan is up next. We'll see if the insurance company meant what they said when they said, in writting, that it was covered...
Anyone know what the clinical implications of "disease activity" are relative to actual lesions? All recent MRI have been clear, including c/t-spine from a week ago.
Kyle
Thanks for the links!
From what I can make out, Fetuin-A & Osteopontin are indications of inflammation/disease activity. It would make sense that someone with SPMS would have elevated levels of these things in their CSF.
It also seems that Tysabri helps keep these items in check. My CSF was drawn within 28 days of my last infusion, so I should have still had therapeutic levels of Tysabri in my system...
I'll see what my doc says when we chat on Wednesday.
Kyle
I just have a few minutes but found this article abstract about the fetuin-a, it's a brief explanation but I got it, not too much reading.
http://msj.sagepub.com/content/early/2013/02/25/1352458513477923.abstract
here's on on osteopontin:
http://msj.sagepub.com/content/19/7/877.full
This is a start anyway, I'm curious too so I'll add more info if I get some time later to dig in a little more.
Hey Kyle, i found sometime but i can't get it big enough for me to be able to read it well enough, sorry. you'll need to read it to see if it helps or not, hopefully it gives you something.
http://www.docstoc.com/docs/40388610/Monitoring-of-natalizumab-therapy-with-cerebrospinal-fluid-activation
cheers........JJ
I tried LTG. Made me very drowsy!
Anyone? Anyone?
Hahaha!!! Love Ben Stein!
No, Kyle, sorry, but I'm clueless. Might aak Lab Tech Google.