Vicky - Thank you so much for asking and thinking of me! I tend to not post all my trials and tribulations because then I must think of them. Denial is good sometimes, especially when I'm waiting for important tests. I'm going for the brain scan a week from Wednesday, on the 3rd of December. I won't see the doctor until December 11th for the results. Being impatient I tend to go get the reports prior to seeing the doctor but I don't know if I will this time. I admit I am a bit freaked out over the possibilities of the results.
Since you posted to me, I'll use this opportunity to ask you something. Do you think that those of us that have developed lupus after using Remicade and/or Humira should be more vocal about
what has happened to us? I am beginning to believe that Remicade induced lupus is a bigger problem than has been reported. I got really positive gut response to Remicade and it definitely helped my joints ~~ but at what price now? I am also concerned that it I am too vocal it might alarm someone to an extent they don't take Remicade when it might help them.
I have some papers from the manufacturer sent to my doctor at the time of my lupus diagnosis . The reports totally downplay the possibility of full blown lupus as a result of Remicade. Perhaps after the holidays when I have more time, I will take a survey and see how many here have lupus after the anti-TNFs. At that time I can share the manufacturer's response to my GI's inquiry.
Enough rambling - again, thank you for thinking of me. I'll be sure to let everyone know about
my brain MRI - pray they find that I do have a brain!
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.