Make a connection, ask a question, share a concern, give advice or just chat. Our message boards connect you with a community of people who understand where you’re coming from and what you’re going through.
I have found this website in search of some much-needed answers. My mother has RA and she has taken Humira for almost two years. Two days after my mom's last shot of Humira, she developed a fever. Three days after that, she went into the hospital. One week after her last Humira shot, she was on a ventilator being flown to a bigger hospital and the doctors told us to call everyone in the family, because they didn't think she was going to make it through the night. I have read all of the tuberculosis and serious infection warnings on the insert that comes with Humira, but what I want to know is this: How many other people have found themselves or a loved one on the brink of death while on this medication? Thankfully, my mother made it through that night that the doctors told us to call the family and she has made it through a couple of other close calls since. But this is week 4 of her hospital stay and she is just now able to eat solid foods. Her rheumatologist told us that he has never seen a case like hers, but I would like to know what those of you experiencing RA think about the whole situation. My family and I appreciate any feedback you may be able to offer us!
I would just like to add-on to what I have previously posted. It is day 42 of my mother's hospital stay. The doctors have scraped cells from the inside of her lung, removed part of a lymph node, then an entire lymph node was removed from her lung, and two sections of lung tissue were also taken. THE DOCTORS CAN NOT FIND ANYTHING. Thankfully, she is one heck of a fighter, her fever has gone away, and her lungs are working extra hard to heal (although both collapsed after the lymph node and tissue surgery on Christmas night). Maybe no one wants to reply or talk about it because their situation did not turn out like that of my mother. But I need to know how common this is in the real world (I have read the info submitted by the Mayo Clinic in May 2006). I know that my mother is not the only one in the world who has experienced this; I just want to know if anyone had a doctor that tried something different or odd and had success with it. My mother is doing good, but the pneumonia has come back three times within the past 42 days and I want to be prepared if it comes back again. Also, if anyone wants to know, when the doctors were unable to pinpoint the infection through the cultures and biopsies, they started my mother on steroids and she has been steadily improving since.
I just now found this site and would like to respond to your question. I too had problems with Humira although not as bad as your mother. After my first injection I developed a sore throat and swollen glands. Next time the infection was worse and I already started suspecting Humira. I called my rheumatologist and hee said to skip my next injection and start again the next week. My illness started to clear up. After starting the injections again I ended up developing a serious case of bronchitis which I have never had before. I ended up going to the emergency room as I couldn't breathe and my oxygen level was very low. I received oxygen and breathing treatments. I refused to take the Humira again and my doctor agreed. It took a long time for me to heal and I have since had a long bout of pneumonia, another thing I never had before. I truly believe it was the Humira. Also, you mentioned steroids. I have been on prednisone since 1991 and while long term usage of steroids does a number on your body it's really the only thing that helps the most. Hope your mother is ok now. Take care. Bonnie
Hi, too bad humaria did not work well for you. I have been on enbrel now for 2 years with mtx and i am doing great. I was in very very bad shape when i started on it. My ra was bad.Take care Manga
Bonnie - Thank you so much for sharing your story. My mom is doing much better, although she still needs oxygen whenever she is doing anything strenious. She has not been on steroids for a while now, and she is doing very good at physical therapy. She has a treadmill now at home so she can keep up with the therapy. Her and my father are going to celebrate their 30th wedding anniversary at the end of this month! Life is so much sweeter since she has gotten better. She is never going back to Humira even though she has days where her fingers involuntary clench and turn white. Thank you so much for being the first person to respond, as I was beginning to think that no one would ever answer.