My DW and I visited my Neuro today and talked about Ty in detail. I signed all the paperwork and got the ball rolling. From there I went to Quest and had my blood work done. My Neuro said I should hear something from Touch in about a week and they would tell me where and when to go for my first infusion assuming my blood work comes back ok. I still feel a bit apprehensive but I'm sure that will clear up once I get started. Hopefully!!
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Dx'd 4/1/11. First symptoms in 2001. Avonex 4/11, Copaxone 5/12, Tecfidera 4/13 Gilenya 4/14-10/14 Currently on no DMT's, Started Aubagio 9/21/15. Back on Avonex 10/15
It's hard to beat a person that never gives up.
Babe Ruth -
Waydwnsouth1,
I was diagnosed in June of 2010, and the only DMD I've been on is Tysabri. Since I was diagnosed late in life (58.5), I knew my chances of any improvement were close to nil; my brain reserves were spent dealing with the children I taught for 26 years. My neurologist felt Tysabri offered the best option for stopping any further progression.
I spent four weeks checking out all the options as the time (the CRABs), but even with the risk of PML, I just didn't see myself giving me a shot. Also, they weren't even close to Tysabri in efficacy.
53 infusions later, I've never regretted my decision. I'm still dealing with the disease process started before diagnosis, but all my MRI's have been stable with no new or enhancing lesions. I still check out the new drugs available, but I haven't found even one I've considered making the switch to. Just reading the side effects others are experiencing is enough to scare me away!
I get one "stick" every 28 days, and then return to my everyday life. There were only two infusions early on where I felt anything "not quite normal", but this quickly passed, and life goes on.
I am JC-, so my risk is somewhere around 1/10,000. However, even if you test positive, Tysabri can still give you at least 18 months to slow your progression. Who knows what new drugs might be available then? I'd say give it a chance. I truly don't think you'll be disappointed.
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Sorry Tec didn't work out for you. A lot of MSers have good experiences with Tysabri. Personally, if Tecfidera ever becomes non-effective, I will definitely bring up Tysabri to my neuro. There are so many success stories out there. As long as you're being monitored for JCV -- some are getting their infusions spaced out 6 weeks apart.Originally posted by Waydwnsouth1 View Post
Good luck with all the preliminary things that need to happen before your first infusion. Others have posted great advice about what to bring, etc during the infusion.
Good luck,
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