My rheummy is following me closely. I get 8 tubes of blood drawn every month to test the status of the positive ant-dsDNA antibodies. So far the titers are positive but very low. This is the reaction seen in the clinical trials. Whether I actually have Remicade induced lupus is unknown. My rheummy admitted he does not know. My GI said I didn't. The problem is that the symptoms of lupus are so similiar to the diseases I already have. Joint pain can present very differently among the diseases but sometimes it is hard to differentiate when I fell plain old crappy. I have developed periodic rashes that the rheummy wants biopsied to help him make a diagnosis. Problem is when I saw the dermatologist, I got a PA, and she never even looked at me.
I have chosen to continue receiving Remicade. The reason is two-fold. My rheummy and GI both say it is ok as long as I am followed and get my blood work drawn exactly on schedule. The other reason is something I can only explain as a gut reaction. When I was talking to my GI on Thursday about
my fears about
this lupus thing he said, "Well, stop getting Remicade and see what happens to your Crohn's and joints." My immediate response, without forethought was, "I cannot bear to think of that."
Before they got my joints and enthesopathy under control with the Remicade I was walking first with one cane, then two canes, and then a walker. The rheummy said I should buy the walker instead of rent because it looked like this was going to be an on-going problem. I was unable to drive, shop, do minimal household chores. I could not get out of bed without assistance nor could I dress without help.
I am NOT going back there! I have always been an active do-everything type of gal. I cannot do everything I used to. I can shop for groceries and cook dinner and drive my car. And on good days, I can go walking on the mountain and smell the flowers.
Enbrel might work on my joints but it does nothing for the GI issues of Crohn's Disease according to both my rheummy and GI. Humira is not approved for CD or AS [ankylosing spondylitis which SpA-E is a cousin of]. Rheummy is trying to get me through until it is approved for one or the other since I qualify under either disease.
Knit, keep me updated on what you decide. I'll check back here later to see if you have more to discuss.
Ides, your sister in the Remicade woes