The question that seems to be coming up is "Now what, are you going to come off the meds?" I don't think so. I need to talk to my doctors. If my results had come back unchanged it would be a much easier to throw in the Imuran towel. I have a feeling the docs will suggest I stay on for the duration of the treatment (full two years).
This is probably hard for many to understand, but the results were a little sad for me. I'm not ungrateful that my lungs are better but the results have solidified my pulmonary Behcet's diagnosis. There was always a part of me that was in denial. "Nah, my lungs aren't really being affected by the Behcet's, it's a coincidence. It's actually residual damage from some kind of environmental exposure." The fact that my lungs have got better with this treatment makes for an undeniable truth.
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I've been on Imuran for a little over two weeks now and the results are nothing short of miraculous. I'm also still on prednisone and Enbrel. I haven't been this lesion-free since March when this nightmare first began! I'm not sure what to do with myself now that I don't have to worry about lesions oozing through bandaids or clothes. :)
ReplyDeleteBut I totally understand you. This Sunday I had a very small meltdown where I admitted to my partner that I hated the day before my Enbrel shot, because my joints get progressively more inflamed. It means that the medicine is working, but yeah, I've undeniably got Behcets, and staying on the medication is the only way to stay healthy. I was almost trying to convince myself that I was imagining all of this, you know?
Betawriter...thank you for you comment. I absolutely know what you mean about the convincing imagination. For so many years I had strange things happening to my body that couldn't be explained. I'm so happy that you are lesion free. It's a wonderful feeling but do you plan on coming off the prednisone? It's such a horrible medication (not that Imuran isn't) and should really be avoided at all cost. But that's just my opinion. I hope you give the Imuran a chance minus the prednisone.
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