I tell ya, I'm getting there awfully darn quick! I posted a similar thread not a couple hours ago. I've been on 'Cade for close to 4 years now, and have popped up wtih a low neutrophil count. Until we get that figured out, no more Remicade. Thing is, until I *had* to consider it, I didn't realize that Remicade was really taking a chunk out of my life. Yeah. It worked. It worked admirably; I dodged surgery because of it's reputation for healing fistulas and scar tissue. I just don't know how I feel about it long term any longer.
Even though my infusions were every eight weeks, they took three hours, with a 45 minute trip each way to the infusion center. Then there was the week before the infusion, when I would try to get all the house cleaning done and have some leftovers on hand. This, because for about two days after the infusion (forget the day of!), I'm about useless. I have to sleep it off. So...all teh stuff I would normally get done on the weekend gets shoved to other corners. Then there's the amount of time I worry about paying for Remicade -- the other seven weeks, basically. Every insurance I've had has argued about paying for it -- whether it's a pharmaceutical or a procedure or what. Patient assistance gives you the drug, but the nurse's time is like $500. It's overwhelming.
I'm looking into some alternatives. Feel free to email.
As for your daughter. How long since you did Remicade? I would encourage you to give the doc a call, get the dirt on lymphoma. It seems like there would be some noticable stuff going wrong if you had lymphoma (I could be wrong). The lymphoma caused by Remicade is pretty vicious from what I understand. Was he also on imuran or another, similar drug? Last news I read was that those who did get lymphoma were on both. I had trouble with imuran causing migraines, and then this came down the pipe, so I quit taking it. In any case -- knowing the truth is always better than what your imagination will come up with. Get the dirt, share it with your daughter.
"Let me light my lamp,"
Says the star,
"And never debate
If it will help to remove the darkness."
-- Indian poet, Rabindranath Tagore