Ides, I have some questions

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straydog
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Date Joined Feb 2003
Total Posts : 13455
   Posted 10/30/2007 11:40 AM (GMT -7)   
Hi Ides,
 
You had answered a forum I had posted on about being dx'd last week with Lupus. You mentioned they thought with you it was Remicade induced. How do they determine if its Remicade induced?
 
My 2nd ANA test came back higher than the first. I had a C-Reactive Protein that was elevated, it was 1.21, normal is 0.80, and the SM/RNP Antibody was elevated and this one is pretty much what nailed it for the dr. My PCP is really going to be surprised, she did alot of blood work on me to eliminate Lupus, instead she really thought it was Mixed Connective Tissue Disease.
 
Any help you can give me I appreciate. Susie
 
Oops, forgot to tell you, I was on Remicade 3 1/2yrs, every 4 weeks.


Ides
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Date Joined Nov 2003
Total Posts : 7077
   Posted 10/30/2007 7:58 PM (GMT -7)   
Susie,
The issue with those of use that have been Remicade and then develop either a positive ANA and/or autobodies found in lupus is whether we just have the antibodies or have developed the disease. A large percentage of people that take Remicade develop lupus antibodies. This has been studies many, many times. Only a few actually develop the disease. The antibodies can remain in the blood for some time after going off of Remicade. At first, some studies suggested that the antibodies cleared within 3-4 months. Another study at the link I am posting said that antibodies persisted for up to a year. Autoimmunity associated with anti-tumor necrosis factor alpha treatment in Crohn's disease: a prospective cohort study.

My rheumy has my blood tested every month to watch for signs of actually lupus disease. Because I have the anti-dsDNA antibody he watches kidney function closely be cause that antibody is associated with kidney disease in lupus. At one time I developed a facial skin rash that the rheumy thought might be lupus. He wanted me to see a dermatologist ASAP for a biopsy. My insurance dragged in providing authorization for me to see a derm and by the time I got there, the rash had gone away [this was like 10 weeks]. My rheumy was most upset because he said a biopsy of a facial rash can definitively diagnosis the disease if it is positive for lupus.

Those that take medications that can induce lupus antibodies cloud the issue in diagnosing lupus until there is something definitve like a positive biopsy or actual organ damage. There are very few cases of people on Remicade actually developing lupus outright. So this is a wait and see game. I have only been off Remicade for 2.5 months. And now I am taking Humira, another anti-TNF drug that can cause lupus antibodies. So the rheumy is watching and seeing. In terms of "diagnosis" my rheumy uses the ICD code for unspecified diffuse connective tissue disease.

I have loads of info on the subject because I researched it like heck when trying to decide if I should stay on Remicade. I developed the antibodies 6 months after starting Remicade and kept getting infusions for another TWO years after that. If you want some of the articles I have gathered just say so and they are yours!


Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13455
   Posted 10/30/2007 8:41 PM (GMT -7)   
Ides, thanks so much for replying. I have been off Remicade 10 months, wow, thats hard to believe its been tha long. When your dr did your labs in the beginning what was your SM/RNP, I feel quite certain that would have been a test he would have done. From what the rheumy says with mine being elevated that gave me the dx. He is telling me if it was Remicade induced this would not come back elevated. I may well be in a little denial here, I certainly was when dx'd with cd. I had already had a bowel resection and still refused to believe. Rats, just one thing, lol. Again, thanks so much. Hang on to those papers, I may well need them, Susie


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 10/31/2007 3:42 PM (GMT -7)   
I have a different antibody associated with lupus - anti-dsDNA. It is the only antibody for which I have had a positive titer. Initially my titer was 80. It has varied between 40 and 80 most months except for a 4 month stretch where it suddenly was absent. My rheumy said that was an anomaly and that the lab likely screwed it up. I have see a few instances where the SM antibody is mentioned in DIL [drug induced lupus] but cannot seem to put my finger on that one at the moment.

What I think is truly shocking are the number of medications that can cause DIL. That a look at the list here: Drugs that can induce lupus


Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?
 

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