This is a follow-up to my first video years ago about the journey of a rare and frustrating diagnosis. I hope it can help others going through this journey.
So sorry, I have been going through the same. I haven’t found a biologic that I can tolerate yet. Just tried my 5th one and my body rejected it. I’m wondering if you have been tested to see if you have the HLA-B27 gene? I am positive for it and wonder if that could be related as a cause for the orbital pseudo tumor. Hugs and prayers that we can both stay off prednisone!
So sorry, I have been going through the same. I haven’t found a biologic that I can tolerate yet. Just tried my 5th one and my body rejected it. I’m wondering if you have been tested to see if you have the HLA-B27 gene? I am positive for it and wonder if that could be related as a cause for the orbital pseudo tumor. Hugs and prayers that we can both stay off prednisone!
Oh no! What are you on now? You couldn't do Methotrexate either?
I have never heard of this gene! I will ask my doctor at my next visit, thanks!
xoxo