MRI - Positive or Negative

By Ivana

1 min read

I am a 47-year-old female who was diagnosed with non-radiographic axial spondyloarthritis two years ago. I am HLA-B27 positive, and my MRI shows inflammation. All this time my blood inflammation markers are normal, which I've learned is often the case.

You can't see my pain, but I can feel it

However, my second (one year ago) and third MRI (a few days ago) showed no inflammation, and my inflammation markers are still ok. So, on paper, I basically look completely healthy and/or in remission, but in reality, I am falling apart all this time and getting worse and worse by the day. I even quit my job a few months ago as I could not cope anymore. That's how bad it was! It's wrecking my head and my rheumatologist's too!

He agreed today I should try Humira for four months to see if there is any improvement, but I'm not very optimistic as there is no evident inflammation, so he thinks it might not work. Is there anyone else out there with a negative MRI or who shares a similar experience?

Finding a community on AxialSpondyloarthritis.net

I also want to thank everyone here, as without you I'd think I am crazy! I was so happy when I stumbled upon this website and read all the stories. They so often seem like something I would or have said myself in regard to how I feel, symptoms, coping, etc. I'm sure you all know exactly what I mean!

Thanks in advance for any replies!

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James Hollens Moderator & Contributor
Hey <inline-mention username="Ivana" user-id="6637576"/> , Sorry to hear you are having these troubles at the moment. These tests are so useful most of the time but when they come back normal and we know that is not the case in our bodies it can be very frustrating! My first MRI scan came not showing anything about AS at all on the results, but I soon found out that the radiologist was looking for slipped discs instead of AS specifically! So I had to go back for another and luckily they did find it. Glad to hear that they are still offering to put you on medication though. I hope that it kicks in and gives you some relief soon! Fingers crossed in the mean time they can get some results to find out what is going on specifically! Thank you for being party of this community and being brave enough to share your story too! How are you getting on at the moment? Sending love, James (Community Member)
Julie Vallortigara Moderator & Contributor
<inline-mention username="Ivana" user-id="6637576"/> Hello, Thank you for sharing your story. I hear you, as I am also diagnosed with non-radiographic AxSpa (and I am HLA-B27 negative). I never showed inflammation on MRI, even when I was at the beginning of my journey with AxSpa and not taking any anti-inflammatory drugs. I guess the difference I have with you is my CRP was up the roof...anyway, I have met people who did not show increased blood markers and still could benefit from being on biologics. I have been taking Humira for more than 7 years and this has worked very well for me! So I really hope you will find some relief with a new treatment. We are sharing the same diagnosis and yet we are all different in the way the condition does manifest in our bodies. You know what you are going through and how you are feeling in your body. You are doing well in getting information and discussing care plan with your rheumatologist. Take care and keep faith, you will get better 😀 Julie.
merman Member
Hi Ivana-- I am a 58 year old female and was recently diagnosed with HLAB-27 positive non-radiographic axial spondyloarthritis. I originally start on leflunomide which helped quite a bit but still had flares and pain so I added Enbrel about 6 weeks ago which is a TNF blocker similar to Humira. I found it helped a lot! I also don't have any blood inflammation markers and my MRIs didn't show much. I hope you also experience improvement with a biologic!
Anna Samson Moderator & Contributor
Hi Ivana! I’m sorry to hear you’ve been struggling so much. I can’t imagine how confusing and frustrating it must be to seem “fine” on paper but dealing with symptoms nonetheless. I hope the Humira offers some relief.