Spondylitis Association of America Forums General Discussion General Message Board for Ankylosing Spondylitis and Related Diseases Humira problems:need input.

I have managed four shots of humira and have had to stop. It flattened my SI joint wonderfully but it made my neck extremely painful and covered with swollen lymph nodes that were up to one cm in size(ultrasound). I ran slight fever with it and was extremely tired with it. My rheum gave me a zpak and nothing else. It did nothing for the lymph nodes or tiredness. I do not feel safe taking the humira because my doctor does not seem to take my obvious signs of infection very seriously. It has been six weeks since my last shot and while I am not as bad as I was in August when I started, my SI joint is starting to act up a bit. It is easier for me to get in a neutral position to aleviate sacroiliitis then a stiff neck. I want to try Enbrel but not if I end up the same. Has anyone had these issues with a biologic and if you did, was your rheum a little more careful with you than mine? Should I have gone to the ER rather than expecting my doctors to care? My diabetes dr ordered the ultrasound of my neck by the way and the funny thing? The ultrasound helped my neck to feel less stiff. Any ideas folks?

Sorry that sounds awful. I haven't had swollen glands to that extent but just wanted to point out that steroids also suppress the immune system so the zpack might be contributing to keeping the glands swollen.

Did you have neck pain early in your AS journey?

I too am on Humira, 4 shots, and my neck is bothering me too. I was at my rheumy yesterday. I had neck pain like this about 20 years ago, slowly it decreased till about 5 years ago, since then I've had virtually no pain and now it's coming back.

My rheumy explained to me that sometimes when inflammation from spondy is decreasing, the old pain (which in my case might be some osteoarthritis or disk issues) may come back due to the tissue being less swollen. My SI-joint pain is also gone too, and I've been more active, and she explained that might also be contributing to my neck pain.

I haven't had the other problems you listed so can't help there, sorry.

Did not have any problems with Humira, but since you have had tests, I assume blood tests too? That would tell if it was an infection.

In the beginning, I did have sinus issues and had to eat spicy hot food to keep them open--they were swollen. That ended after two three months--darn because I was milking it for Thai take out.

Sometimes you do have more pain in the beginning because the swelling around the joint goes down.

When I was first starting out with Humira, I would get severely inflamed folliculitis cysts a few days after every shot. That subsided when the medication built up in my system after about 6 months.

I recently stopped Humira and methotrexate for a cold, and as soon as I went back on it, I ended up with a cyst with the diameter of a quarter on my chin. It subsided over about 2 weeks, and I'm not having any folliculitis problems now.

Your symptoms sound a little more dangerous, so definitely be careful, but in general, some of the random infections and swelling that pop up when you're starting Humira can go away as your body acclimates. Though, methotrexate is a different story. I guess I restarted my methotrexate too soon after my last cold, because the same infection came back in force.

For what it's worth, I had far fewer side effects with Embrel than I do with Humira. I had to switch to the latter recently because of my insurance.