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Hello Rfweiss,

I am so sorry you have diagnosed with this awfully under-reasearched disease. I hope you can get your symptoms under control, tell your immune system to back off! ;)

I am so very lucky, I never went on predinsone, though it would have been the easiest thing to do. I 'had fun' for months on 800mg of ibuprofin 4-5xday, the outer swelling went away after only a couple weeks, it took months for my eye motility finally come back and the pain to go away. I went back to work only 1 week after the outer swelling was gone, but my eye motility was still painful and limited, that's what nobody sees. We can look completely fine on the outside but looking in any direction causes insane amounts of pain.

I have not had a flare since my 2 in February (1 month) and April (3 months) of this year. I do still feel pain in my eyes when I have allergies and I rub them (BAD ME!) or under crazy stress. I had eye pain a couple days before my wedding because of the stress I believe. Any twinge of 'that kind of' eye pain sends me back to the ibuprofin hoping I will knock back a potential flare if one is coming. Next time I flare my neuro-opthalmologist (the doctor who specializes in treating this and confirmed it) will get me on high dose prednisone.

I will be honest, seeing a rheumatologist did not help me at all. Mine didn't know what this disease was or why I was seeing her for it. My PCP though I had a secondary autoimmune disease (Lupus) that was causing the orbital myositis, I don't and the Rheumy confirmed that. Is your rheumatologist only to start the immune suppressive treatment, not to treat the orbital myositis? Who diagnosed and is treating the orbital myositis?

I will be sending you good thoughts!





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