Hello again:
I'm interested to know if anyone has had a similar experience to humira that I have had . I asked my new gi doctor if he has ever seen a situation similar to what I have experience and he smiled, thought for a moment and said "no". Great. I chose him because he has special interest in crohns in this group he has part of. I thought maybe he would be less traditional in approach.
I was started on humira by my rheumatologist in spring 2009 for enteropathic spondyloarthropathy. Even though my RLQ pain and sporadic gi symptoms (which I had developed after many years of just pain) had subsided on pentasa I still didn't feel well. I call it a feeling of "malaise", kind of weak, nothing I can describe but I know it when I feel it. This went on for 2 years. Since I did have joint symptoms I was put on humira at 40mg every two weeks. I was on this until the end of the year and progress was slow. Eventually I did feel better (again, nothing I could pin point) and asked to go on 40mg every week which he agreed. Didn't notice anything unusual the summer of 2009 but the following summer (2010) I noticed that I was able to spend a normal amount of time outdoors in the sun without feeling sick and weak and getting an itchy red rash on my forearms (the only place) It felt as if the skin cells on my arms were actually frying. In 2010 this no longer happened! IT was wonderful, what normal people take for granted. I'm not talking about spending hours lying in the sun getting a tan but just being able to stand and watch a parade without having to search for shade or work in my garden without feeling sick the rest of the day.
When I describe this to my rheumatologist he looks at me like I have lost my mind. All tests for lupus over the years have been negative. The true test will be if it returns if he does get me off humira. (he told me to think about it, hasn't actually refused to rewrite the script again) The gi doc told me to stay on my current meds until he does the colonoscopy. (and decides its not his problem)
So I am on 40mg humira weekly and no longer looking for the couch every chance I get. The only possible problem I've had with humira is a few infections and since I've always been prone to UTIs that's hard to say. I wish I knew for sure what is going on. I've been *extremely* fortunate in that this drug is only costing me $5 a month. My copay would have been $40 a month but then I got a copay assistance offer.
I'm curious about the other drugs like this one. I chose humira over remicade (he gave me a choice) because I don't like the idea of the mouse connection. Maybe I really don't have IBD and should be in the category of "undifferentiated spondyloarthropathy" which has features of all of the diseases. In which case I'll have to switch forums.
I'm going to update my signature now. I have no idea what is on it.
Chris