First I would like to welcome everyone back to AI. This has been a
looooooong hall without you all to talk to. I went to my opthomalogist in
December and he noticed I still have the nystagmus going on in my eyes.
He said "this is a central nervous system disorder" and it needs to be
checked out by a neurologist! So off I went to the neuro. He immediately
saw it and talked with the eye doc. He told me he wanted me to go for an
MRI and an MRA of the brain. I asked him what he is looking for and he
said "inflamation of the bainstem". As in MS. CNS lupus , stroke from the
Remicade I was on, or brain tumor. I almost fell off my chair. This whole
episode started after a Remicade infusion. (Blurry vision,nystagmus.
lightheadedness) . That was six months ago.The rheumy did take me off
the remicade and put me on Humira. So far so good with the Humira. I do
know that Remicade has been impicated in MS symtoms. I am freaked to
say the least. Oh my Rheumy also checked me recently for lupus because
I now have livedo reticularis. My whole system either does not like these
TNF meds or I have new things brewing. Either way I find out on Tuesday
from the neurologist what he found. I had it done on the 13th and this
has been the longest week and a half. It said on my form he was looking
to rule out leasions on the brainstem. Sounds like MS to me. I will let you
all know Tuesday what comes out of this one. I have my hubby going with
me---just in case. Has anyone here had CNS problems form from the TNF
meds? Thanks for listening. As you can see I have been holding it all in.
Please take care hope you all are fairing ok. Thanks again TerryWelcome back to you Terry
It's almost like a class reunion or something. I remember your name, but
it's been a long time and can't remember too much in general. I'm sorry
to hear about the eye problems. I have not taken TNFs yet, but
understand your fears and worries about dramatic side effects. The whole
process of trying to get this disease under control is very scary at times
and I wish we could all have a 100% safe treatments. I am praying that
this is only a temporary situation for you and things will get better in the
future. Don't let all this worry make you sicker. Just keep hoping for the
best... and I will too. all my best,
Jeannehi terry! sorry to hear about the CNS probs. i've not been
on any yet. and maybe i am wrong about this but i think i read
that with time the cns issues lessen after stopping the meds. but
don't know if my rememberer thingy is right. but, i'll look and
see if i can find where i read that and post it if i do find it.
www.rxlist.com/cgi/generic3/humira_pi.htm
this has some info. says that lupus like symptoms can develop and
that they got better after treatment was stopped. but it
also notes that there have been rare cases of nervous system disorders
in people on TNFs. no comment on whether they lessened.
the remicade section had errors in loading when i tried it but through
the jumble it did note that it is associated with cns disorders.
Aloha Terry, I am so sad to hear about what has happened!
Good to see you again. I'm sorry you are going through this and have to wait so long for results. Hopefully it is a temporary reaction to the remicade. You are in my prayers.