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Came off Meds 6 months ago but struggling with pain

Hi everyone,

I was diagnosed with AS in 2011 and was given Enbrel which worked extremely well. In 2015 I was diagnosed with crohns and switched meds to remicade which covered both conditions.

I was extremely fit and healthy and running upto 100km weekly and regular marathon races.

In 2019 I moved countries for work and needed to find a new rheumatologist who could prescribe meds. He did this for a year. Then he sent me for blood work and an MRI 6 months ago everything came back clear and so he took me off all meds. This was okay for a while but now I have pain in the feet, knees and hips (I cannot run 100m now never mind a marathon). He sent me for another MRI and more bloods and again there was no inflammation. So he is refusing to put me back in meds.

I know my body and this feels exactly the same as when I was diagnosed in 2011.

Has anyone been through a similar situation? Should I seek a second opinion?

Thanks in advance.


  1. What kind of doctor are you seeing? A rheumatologist? Do you feel comfortable asking the doctor what then is causing your pain if not inflammation? Could it be fibromyalgia? Hope I’m not throwing too many questions at you. No matter how successful the treatment, my husband continues to struggle with chronic pain.

    1. I would definately get a second opinion. I understand this pain you are explaining. I never have high inflammatory markers on my labs, and have both spinal and peripheral AS. Rebecca C. #ASWarrior

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