Post count: 326

    I started out on 50mg and taped down by 10mg every three weeks. I’m obviously not a doctor, but 10mg every week seems like a big jump. My neuro-ophthalmologist’s (he was treating my TED, not my endo – another red flag, as your endo shouldn’t be the one treating your eyes) biggest concern was that even though the 50mg seemed to bring immediate relief, that the symptoms would return as we gradually lowered my dose, or when I stopped taking it altogether several months later. Fortunately, they did not.

    Go to the ophthalmologist tomorrow, but keep in mind not all ophthalmologists treat TED. He or she might, and you might not need the neuro-op (they are usually hard to come by and even harder to get an appointment with). Or, you might be told you’re fine, it’s allergies, etc. In that case, absolutely ask for a referral to a neuro-op because a lot of us were told we had allergies or infections when we actually had developed TED.

    No one “wants” to take a higher dose of corticosteroids given the side effects, but you might need to start on a higher dose or at least stay at the 40mg for a few weeks.

    My neuro-op did tell me that there was a chance prednisone would not help at all. For some people, it just doesn’t. He told me in that case, radiation would not help either. Maybe that it his experience, but you could always ask about your other treatment options if you are right and the prednisone is not helping. I forget from your original posts – is your vision affected?

    Good luck tomorrow. Bring a list of concerns and questions since it may be a while before you can get in to see another TED specialist.