I started on Humira last week. Had two Enbrel shots first but had a reaction so the reumatologist switched me to Humira. I too am very concerned about the side effects but I have very bad joint damage in my hands from psoriatic arthritis. Have it in my feet and knees also. I also have had eye problems for the past several years. I get Iritis in both eyes. For the past few years I've had it twice a year also.
Have also been diagnosed with blockages in the arteries of my legs (P.A.D.)
I was always healthy and active and all of this is really getting me down.
I had drugs but am at the point where I have to try something. I'll let you know how I make out with Humira. Keep in touch and I wish you the best .
I don't post a lot; mostly read. First and foremost, welcome to the forum. Have they done an MRI to confirm the AS diagnosis? Personally, I wouldn't accept a positive HLA B27 as a confirmation. The reason I say this is that some people can be HLA B27 positive and have nothing wrong with them and others will have problems, i.e., Crohn's, UC, AS, etc.
Both my husband and our oldest son are positive. My husband has AS and psoriatic arthritis, but by the time it was diagnosed (1983) he was already fused. Then again, back then they didn't have all the wonderful drugs they now have. The doctor's had both of our boys tested when they were five. The youngest was negative but our oldest was positive. It was just something to 'keep on the back burner'.
When the oldest was 15, he was diagnosed with Crohn's, which was recently changed to UC after the Prometheus blood test. He started having symptoms of AS when he was 17, but they weren't like hubby's symptoms. His would come and go, whereas hubbys would stay for a while. He recently had an 'attack' that just wouldn't go away, so they ordered the MRI. He had bilateral sacroiliitis and was starting to fuse. He was then sent to a rheumatologist who started him on Humira. He felt 100% better just after the first injection and hasn't had any problems at all with it.
I've only been on Humira for 6 months. I have to agree it is a powerful drug, really made a difference to me after about 2 months, I suddenly realised I was waking up without stiffness and could bend and even run. But at 3 months caught the flu which turned into pneumonia, I was really sick in hospital for 6 days, taken off the Humira while I fought the infection and my arthritis really flared, after 1 week my knees were like balloons and elbows, wrists ankles all swollen. Once I was back on the humira it all settled down again within a couple of weeks but it does make me think that whatever Humira does must be very hard for the body to replicate. My arthritis had never flared that badly before when taken off mtx or arava or sulphasolasine for previous infections/ low white blood cells/ liver function reasons. It seems once we are on it we're on it for good!!! Did anyone else have similar experiences?
On Humira I don't appear to have any side effects, blood work all good etc, but there are no really long term studies done yet, so it does make me worry what its doing to me. Glad to say my ribs seem to be finally healing (from all the coughing got arthritis in my ribcage-cortisone to the rescue, I'm winding mysef back off the doses now) I also have a non specific form of arthritis, test negative to most things, but diagnosed from my symptoms...swelling both sides of the body etc.