Rheumatoid Arthritis

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.

HI,MY NAME IS SUZIE JOSEPH MY DOCTOR WANTS TO PUT ME ON THE HUMIRA SHOTS AND IM NOT WANTING TO GO ON THEM AT ALL.MY HUSBANDS AUNT HAS A FRIEND WHO WAS ON IT FOR A PERIOD OF TIME,IM TRYING TO FIND OUT NOW MORE DETAILS ON HER WITH JUST WHAT ALL SHE DID GO THROUGH.ALL I DO KNOW IS SHE WAS PUT INTO THE HOSPITAL WITH BLURIE VISION AND THEY HAD TO GIVE HER SOMETHING TO COUNTER REACT TO STOP WHAT HUMRIA HAD DONE TO HER EYES.SO FOR I HAVE BEEN PUT ON METHOTREXATE WHICH MADE MY LIVER COUNT GO VERY HIGH.NOW IM ON HYDROXYCHLOROQUINE AND IT DOSENT SEEM TO BE STRONG ENOUGH FOR ME.IM A NATURAL PILL PERSON WHEN IT COMES TO PILLS AT ALL BUT WITH RA THERES NOTHING STRONG ENOUGH TO WORK THAT I HAVE FOUND.MY PROBLEM IS I HAVE SPASTIC COLON AND IRRTIABLE BOWL SYNDRONE SO I CANT TAKE STUFF TO UPSET THE STOMACH.IT SOUNDS LIKE MOST OF THE MEDS OUT THERE FOR THIS IS FOR CANCER PATIENTS.

I have been on Humira for a 2.5 years now for Crohn's Disease. Over the past 9 months I have been battling one case of pneumonia, numerous sinus infections and chest colds along with 4 cases of strep. I have been on every antibiotic under the sun and even had sinus surgery! I do fairly well while on the antibiotics but as soon as they wear off the infection comes back in full force. I sincerely believe that my inability to kick this is directly related to Humira. I take my shots weekly and have tried to move to biweekly, however the Crohn's symptoms kick up around day 9-10 so I don't push it.

My doctors all have stated that they haven't seen this in other Humira patients either, however I was part of the trial prior to Humira being FDA released for Crohn's. So I can only assume that most of my gastro's patients haven't been on it as long as I have. Not sure if that is a direct correlation or not.

Also to note - my Gastroenterologist was adamant during my sinus surgery that I NOT take Prednisone in conjunction with Humira. He stated that this would literally take away any ability to fight infection.

I will pray for your mother. I have always considered Humira a blessing as it is the first treatment to really calm the Crohn's down. However, my general health is now taking a hit and I am now heavily questioning the risks.

I have RA. I have found an alternative way to help my disease tremendously. I would love to share this with you. You can contact me at esbest@sbcglobal.net.

Should also add that this alternative method for RA has NO side effects.

I have been on Humira for about 3.5 years - Fortunately I haven't had a problem with it. I started out on Remicade after trying all the pills, none of them helped me. The Remicade got me functional again. Then my Rumi switched me to Humira for convenience. And I didn't notice any change. Now I'm on medicare and the out of pocket cost is around $500. Is there anyone out there who has gone off Humira, and for how long. Have any of the pain and stiffness returned?