Well things kinda worked themselves out sorta – thanks for all the prayers and well wishes across the miles/ocean/etc. I got to the MSCA early yesterday because, of course, I wanted to buss a small lime with everyone there whom I haven’t seen in 6 months. Talking with the nurses (in the infusion room) was a MUST because (as much as I like my doctor), I prefer talking with the them and getting their feedback/opinions.
One of the first things that Anita asked when I talked bout going back on Tysabri was, “what is ur titer levels?” Eh??? I had no idea what she was talking about.
Turns out, there’s now a test to measure the level of JCV antibodies in my system. This particular test gives them an idea of the risk of actually contracting PML. They started doing that test AFTER I stopped. If course, nothing is absolute so jes because I may be in the “safe zone”, doesn’t mean that I WON’T contract it, but it’ll b slightly comforting to know that I’m “safe”- am I making sense?
Anyway…they drew blood yesterday to do that test. I felt really good (armed with this info) going in to talk to Dr. Gilbert. I explained to him that my disability is much worse – he could see it himself – and he was in agreement that if my titer level comes in at less than 1.2 (that’s the number of the hour), tysabri it is! Fingers/toes/eyes/legs/arms all crossed that this happens…I’ll worry about the money involved later.
If I come in greater than 1.2 (I’m also going for an MRI-if that shows additional scarring means Tefidera is NOT doing what it’s supposed to doing) I’m going to switch to Gilenya (in his opinion, it’s a better drug), 1 of the other oral options available. And then he told me bout Lemtrada!
It’s been submitted to the FDA for approval…the MS community (researchers,doctors, everyone involved) is hopeful that it’ll b approved soon (it’s already been approved in Europe and Canada). From what I read last night (this article), this drug is coming with at least 20(!!) years of research. Wow!! Of course there are side effects, but that’s a story for another day over some drinks. Dr. Gilbert also shared that the drug is even better than Tysabri and is only administered (by infusion) twice a year.
So much has been done (and is currently being done) wrt MS these days, I guess now is as good a time to have it as any. 10/20 years ago, there weren’t as many options, it took so long for patients to b diagnosed and so little was known…
alright…well on to ur regularly scheduled programme – i gone so!