Re: Discouraged with my orbital pseudotumor/ocular myositis
I don't know if i have encouraging words but I know exactly what you are going though. I was diagnosed with an orbital pseudo tumor since the beginning of Jan and I am still undergoing treatment. I have been on prednisone since Feb, after my surgery at the end of Jan (a biopsy and a debulking to remove some of the mass). I started at 100mg of prednisone and have attempted to wean off of it but have not been able to get lower than 10mg. The side effects from the steroids are horribleÖ I think I have all the rare side effects that I have been reading about, to add to the moon face Iíve gained 60lbs, my skin has gotten lighter and is super sensitive I bruise very easily, stretch marks, about half of my hair has fallen out, and Iím retaining water like crazy so my legs and feet are swollen. I had to get prescribed water pills to keep the swelling down. My rheumatologist even tried to substitute the prednisone for methotrexate but it was not effective. Since several attempts to get off the steroids failed, my ophthalmologist referred me to a radiation oncologist. I recently underwent 10 sessions of radiation therapy; my last session ended about 3 weeks ago. Before the radiation, I was on 20mg of prednisone. The oncologist said that my symptoms might get worst before it gets better. So far I have noticed the swelling on my eyelids have gone down and it feels like the mass is shrinking a little. However, I am still on 15mg of prednisone, I tried to wean it down to 10mg but I had a to increase it back up to 15mg when I started to have pain and headaches. The goal of the radiation is to finally get off these meds, Iím hoping and praying that I can because this disease is not fun. I hope I didnít scare you, just thought I would share my story. Now I am patiently watching my eye hoping for some relief!