Anyone with AS (axial spondyloarthritis) in the house? Thoughts on TNF inhibitors / biologics?


So I just got diagnosed with axial spondyloarthritis . . . Just curious if anyone else has this dx or suspects it? Is this a common overlap? I'm slated to begin Humira next month, so grateful but also really nervous about the impact on my already shitty immune system.

TLDR: It took me 5 years to get approved to see a rhumatologist (5 years of my PCP gathering evidence that I what I had was more than "fibromylgia" and nuerology saying "there's nothing wrong" (haha). Anyway, my RA factor and all my inflammation factors have been sky high forever, so I wanted to consult about an RA diagnosis . . . just shocked to end up with AS, I had only been familiar with classic ankylosing spondylitis (fusion of the spine, common in men with the illness) but was not aware of the difference in presentation of the illness in women.

Relevant history: ME/CFS/Fibro symptom diagnosis in 2012, rapid onset of illness in 2010 after a cluster of stressors (emergency c-section /epidural June 2009, severe H1N1 Oct 2009, moved / bought home Apr 2010, sinus surgery May 2010, chronic sinus infections resulting in tons of antibiotics from 2006 - 2015, Eptein Barr reactivation 2010-2013, Parvo 2012, found out in 2015 our house had unsafe levels of radon for 6 years, high emotional stress). At worst in 2014ish was bedridden most of the day, able to work about 5 hours a week. At the peak of my illness I lived in Santa Fe, NM, the dry weather helped the pain but the high elevation and sun contributed to fatigue / cognitive symptoms. Current status: in remission-ish, meaning I can work 15 - 30 hours week and have been able to walk up to 4-5 miles. So much better, but pacing, flares, fatigue, cognitive imparment, poor immune function will probably always be my baseline. I think I might have been misdiagnosed with Fibro, I'm thinking I actually don't have fibro at all and pain is from AS.I was doubting if I even still have ME, but i went to the gym yesterday for 50 minutes, preformed at about 35% of what I felt was my capacity and PEM is kicking my ass, exactly 24-hours post work-out so pretty sure ME is still a thing for me.

Biologics (tumor necrosis factor alpha (TNF-α) inhibitors) / Humira decision: I'm leaning heavily towards trying the biologics. In addition to the hellish pain alone the spine and neck, in the last few years my joints are freaking out - I have bursistis, tendonitis, enthisitis everywhere. I picked up a chair in March of 2022 and the pain and mobility have gotten steadily worse despite PT, just got imaging that showed: arthritis, bone spurs, bursitis tendonitis, torn rotator cuff, torn bicep, ortho said the AS predisposed me to these kinds of injuries. The primary treatment for this illness is NSAIDs . . . which I'm allergic to (of course, haha). Anyways, the pain is consistently debilitating enough I would be making death with dignity plans if I didn't have a kid under 18. Even though the side effects are scary, my quality of life is so bad as it is, I feel like I don't have a lot to loose. Really curious if anyone in the ME community has had any experience on Humira in particular or biologics in general and what the effects were on your immune system.

Thanks friends!

Mrs Ed

New Member
Wow, our story has a lot of similarities. I had ME in my early twenties, fibro and RA from 2009. hEDS & still get PEM. Some other issues too. Out of frustration I paid to see a fibro specialist last week and was told I may have AS. The specialist said they have a similar patient that has done really well on a biologic.

I understand your concerns about the potential effects your immune system, but it could be life changing with reducing your pain, and could reduce your fatigue.

I did think do I really want another diagnosis? But to have something that is treatable feels positive. A relative has AS and has done well on a biologic.

I wish you all the best with it.

Get Our Free ME/CFS and FM Blog!

New Threads

Forum Tips

Support Our Work



Shopping on For HR

Latest Resources