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Date Joined Aug 2008
Total Posts : 233
   Posted 10/23/2017 5:03 AM (GMT -7)   
Back on the Orencia after missing two infusions because I got pneumonia. Had a second one a week ago and next day flaring bad again. I really think drug makes me worse. Humira wasn't working well anymore so my rheumy wanted me to try the Orencia. I keep telling her I know it isn't going to work and seems to cause a lot of other problems. I now have more eye problems (the gel behind both eyes is detaching from the retina). Even when the Humira wasn't working as well I felt better than this and never had the eye problems. Since starting the Orencia I have had a trip to the ER - pneumonia, cysts on my liver and worsening heart problems. I haven't had Humira since May and would really like to try it again but my rheumy refuses saying it won't work. If it keeps me from going blind that would be enough for me. Anyone go back on Humira after stopping for awhile and did it work?

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Date Joined Feb 2003
Total Posts : 15177
   Posted 10/23/2017 8:17 AM (GMT -7)   
Alicat, after reading what has happened since being put on Orencia, I agree this is not a good medication for you. Looks to me like the dr is blowing you off & not listening to you. I have used Humira for crohns disease & was able to go off of it & resume it at a later date. Some of the bios like Remicade once you stop you cannot resume it, but Humira was different. Maybe you need to see a new rheummie.

Take care.
Moderator in Chronic Pain & Psoriasis Forums

Regular Member

Date Joined Aug 2008
Total Posts : 233
   Posted 10/23/2017 12:55 PM (GMT -7)   
I don't have another appt with her till January but I am thinking of calling to schedule a consult with her and am going to tell her I would like to go back on the Humira for 6 months (can't feel any worse than I do now) If it doesn't help will discuss other options then. If she refuses I don't know what I will do next.
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