I hear you! 31 cases is a lot to handle mentally, especially since we only had 13 supposedly in September. I am also anxiously awaiting the assay test.
I go for #19 on Monday after 8 weeks break. I'm taking prophylactic antibiotics (Cipro) around the time of the infusion. Cross your fingers that I don't get UTI #5. The only thing I have noticed after 8 weeks is the vision in my left eye is only slightly less sharp (that was the optic neuritis eye) and maybe the balance is a little bit more off but other than that everything seems fine. My energy level has not gotten any worse. I will tell you that my depression has gotten WAY better which makes me wonder if the Tysabri has been causing depression as a side effect.
Still, I am sooooooo glad I went on this drug.
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Originally Posted by shayna
The infusion center I go to has 10 recliners for the patients receiving chemo or Ty. I don't know if they infusion anything else......they refer to it as "the chemo room". The drs are oncologist. My Ty infusions cost between $5500 and $6000 per infusion depending on whether or not they draw blood and I talk to the dr. I'm lucky that I only have to pay the $25 co-pay for a visit to a specialist. But, my monthly medical insurance is $900  It's hurting us financially but I refuse to give up my medical insurance. They can't kick me out because this is covered under my husband's plan and he is "grandfathered" into their insurance policy  If I give this up I'm not sure that any other insurance will take me. Ty is expensive!!!!!!!!!!
When I went for my last infusion there was a Ty patient there that I had not seen in a very long time. She told me that she couldn't afford her medical insurance last year so she had to go without the infusions. She's back in a wheelchair now She's really hoping that once she's had several infusions she'll be able to walk again. Prior to having to stop the infusions she had been on Ty for 2 years.
My next infusion is scheduled for February 19 because I'm trying to wait 6 weeks between infusions. I'm hoping it will decrease my chances of getting PML. The fact that there are now 31 confirmed cases does not give me a warm fuzzy feeling. I hope they have that assay available soon!!!!!!!!!!!!!!!!!!!!!! But, if I test positive I'm going to hate giving up my Ty.....LOL |