Hi all just joined. I'll try try and be brief with background. I was dx with
RA in 2001 and went on MTX and then right into remicade. Had sever
bout of blurry vision, dizziness, headache that led me to a neuro and
opthomologigst and now a neuro opth.
Long story short I have what is called nystagmus a CNS disorder seen in
MS. I was taken off all TNF meds for over two years now and my CNS
symptoms have progressed to "jumpy eyes" and double vision. Along the
way all blood work has been done to rule out MG and lupus several times
so MS is the possible target now.
As far as the RA I have only been able to be given Orencia because it
"supposedily" does not effect the CNS" well will see. My main question for
anyone here is, Is it working for anyone here?
I have had my three infusions and have had no improvment whats so
ever, nothing!!!!!
Am I just expecting to much to soon or have you all notice any difference
any sooner?
With my MS possibility I question everything now including my RA dx all
together because I am seroneg and never swell and have never
responeded to anything but MTX.
Just wondered what any of your experiences have been with Orencia good
or bad please let me know. Thanks for any input.
Oh I have a difficult time reading paragraphs together so could you please
break up your sentences like I have done here. It is much easier for me to
read with nystagmus. Thanks TizzyI am going on my 5th Orencia infusion. I did not notice any improvements until after the 3rd infusion. I feel better I'm able to get up without some morning stiffness. I can go up and down the stairs, I feel better but I do worry about this being a new drug on the market and what it is doing to my body? Good luck.
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