I would be most grateful for advise on Humira and Drug Induced Lupus. I have been on Humira ( mainly weekly ) for 5 years, in the last 3 years I suffered acute, agonizing joint and tendon pain, often affecting many joints at random. I have finally been diagnosed with DIL but am concerned that it may not go away becuase diagnosis took so long. Also, it seems that Humira did nothing for my stricturing Crohns, has anyone tried Vedolizumab? It is not yet available in the UK but possibly the only hope to avoid radical surgery for the Crohns. Thank you in advance for your thoughts.
Humira and Drug Induced Lupus
- Thread starter lizalou
- Start date
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I was diagnosed with drug induced lupus twice. First with infliximab and had to stop it. The second timw with humira last year. In both doctors depended on antibodies anti dna and ANA. The problem is that we dont know my original antibodies before taking anti tNF. Doctors do not ask to do these tests before prescribing anti tnf. Also clinical manifestations overlap with those of Crohn s.!! Furthermore, not every body returns normal when ant tnf is stopped. I think if you developed lupus from one anti tnf , you may develop it again with any antitnf!!
Thank you for your reply. I am sorry you have been through it twice. but relieved it has gone now. I have now been told that Anti TNF's are off the menu for me. I am worried because it took 3 years to diagnose the DIL and I was on Humira for 5 years in total, mainly weekly. Furious with my rheumatologist for not detecting it sooner, from previous posts I have read it seems DIL was diagnosed quickly. I wonder if having Drug Induced Lupus for 3 years ( with intense,severe joint + tendon pain all over ) makes it more difficult to get rid of the Lupus? Does anyone know? From my searches on this forum it seems there are no drugs to improve strictures and fibrosis, I fear an ilesotomy. To have Lupus as well would be too tough to contemplate.
